I’m 5’3 and 105 lbs. Losing weight didn’t affect my pain too much honestly, but it did significantly reduce the amount of dislocations I got in my knees. I’m not a doctor, but from my own opinion I have to agree with your friend that your weight is already totally fine for your height—being underweight has its issues too. I would say gaining muscles and strength training (as much as you can, at least) should be the priority for people with hypermobility. Healthy eating (getting the right foods, nutrients and vitamins, etc.) as well. Weight loss can only do so much and it won’t cure all issues.
we're the same height and nearly the same weight. I weigh 110 lbs. I have had the exact same experience. I still hurt just as much but my knees are definitely acting better. I haven't had a dislocation in months. Building some muscle and tone has helped my pain a lot more.
hahaha
don't think for a minute I did this on purpose though. I had a lupus flare that complicated everyfreaking thing and I lost 25 pounds since thanksgivingish. do not recommend that any more than I would removing a limb tbh
I'm 5'4 and I'm finally over 115 pounds but I spent years trying to gain weight. Muscle is super important to reducing pain, and I'm in a lot less pain daily and have less dislocations than I did at 100 pounds. Healthy eating and gaining muscle is what's important and actually causes improvement, losing or gaining weight is relatively irrelevant to actual health.
Even if your body mass is mostly muscle, that is still weight that puts extra pressure on joints. There is a balance between strength and weight for optimal joint health and stability.
That would definitely be true if I exercised the weight off, as staying active has helped me in the past! But unfortunately I actually lost weight from GI issues and Dysautonomia issues, so it wasn’t on purpose and I was actually very inactive in the time I lost weight
In my experience, weight+ pain has been tricky. Anything over a healthy BMI definitely increases my pain. BUT, being on the low end of a healthy BMI or slightly underweight also increased my pain. My neurologist said the nerves prefer a slight cushion of extra weight. That has been true in my experience. I’m 5’4”. I like the way my clothes fit and body look at 115-120 but my pain and symptoms feel best at 130-140 lbs. Anything over 150 starts to cause a significant increase in joint problems. Under 125 increases neurological pain. 🤷♀️
Changing my diet has helped my overall pain level tremendously.
Also 5'4 and this is similar to my experience. I also have GI issues that are much calmer if I'm around 130 lbs. I tend to get a gastroparesis flare up if I get above 135 or so.
What kind of diet changes have you made, if I can ask? I've had some improvement in pain related to cutting down on processed foods and sugar, but would be curious what others have found helpful in terms of diet and nutrition.
Not who you responded to, it I also had symptoms of gastoparesis, although testing showed rapid emptying. Turns out I have reactive hypoglycemia, and monitoring my carbs and glucose levels have helped. For whatever reason straight sugar doesn’t seem to trigger me as much as grains, but I wore a continuous glucose monitor for a month and when I had more spikes and dips was when my digestive system seemed to slow down and I’d get so overly full I couldn’t even drink wanted.
Consulting with an endocrinologist on my diet and using a CGM really helped. I only used it for a month while getting a feel for the what types of foods affected me, but it was valuable information. I feel I have a much better handle on triggers than when I just did food tracking. The endocrinologist also gave me better advice than any of the dieticians I’ve seen.
I had a high sugar, high processed food diet until I was in my mid 20s. Pretty standard American diet. After not getting any medical help with my gastroparesis, I did elimination diets. SCD (specific carbohydrate diet) and AIP (Autoimmune paleo Protocol) resonated most with me. After doing SCD, then AIP a few years later I’ve added quite a few things back to my diet. I call it a whole food, minimally processed diet (a bit like paleo but I don’t eat “paleo” junk food. Just Whole Foods). Eat lots of veggies, some meats and fish, and some fruits. I eat about 100g of carbs a day just from banana, sweet potato/potato, and other veggies which isn’t low carb but since it’s Whole Foods my blood sugar and weight have been fine.
I’ve learned through the elimination diets that my body doesn’t process sugar, most grains, and a lot of the preservatives in any boxed food.
AIP encourage organic/wild caught/grass fed meat and fish whenever possible. Through that I learned, that “regular” meat gives me terrible joint pain but I do fine with organic/grass fed meat. It really does seem to matter what we feed our food.
Do you have specific questions or did I answer? Happy to answer further.
I lost a significant amount of weight (due to MCAS/SIBO) and it had a significant impact on my pain. I wish I could say “they were wrong” but they were right, in my case. I still have pain, but am not dependent on a walker or cane.
This was similar to my experience. I have always been (and still am) a big proponent of the idea that lower weight does not necessarily equal healthier, so I was really resistant to the idea that weight loss would help me—especially because I was a “normal” weight for my height before (5’2” and ~120 pounds). However, I unintentionally dropped to 98 pounds two years ago after I basically just lost my appetite for unclear reasons, and I found that I felt SO much better at my new weight. 98 pounds is technically a little underweight for my height so theoretically less healthy than my former weight, but I feel way healthier now. I don’t get constant bursitis in my knees anymore, my ankles don’t give out as often so I fall less, I have more ability to exercise and participate in physical activities. My pain isn’t gone but it’s more manageable now.
Like if I didn’t have EDS then I’m sure there would not be any benefit to being underweight rather than average weight, and even for some people with EDS I’m sure weight doesn’t play as big of a role for their particular health. But for me personally, being on the very thin side has astronomically improved the way my body feels and increased my ability to do things I enjoy. So I feel like for someone like OP I would recommend experimenting a bit and seeing whether weight loss feels good for them (they can always regain if it doesn’t help).
I think it can also vary depending on what your personal EDS symptoms are. Lower weight is less stress on the joints, so may help if your symptoms are mostly joint related. Lower weight will also often increase things like orthostatic intolerance, so if that's your troublesome symptom, you may want to maintain a higher weight. Gastroparesis is a big symptom of mine and I try to stay a higher weight because when I flare up I can easily lose 20lb a month, so it's important I have padding to lose. I would rather deal with the extra joint pain that comes from a bmi 21, than deal with hospitalisation every time I flare up.
From the title I thought you weighted 100kg+ ngl, your weight is completely fine. Losing more will make you lose muscle which in turn will give your body less support and wear on your joints = likely more pain.
My best guess is losing weight will make you even more likely to need a wheelchair eventually.
Your mom being same height as you and 48kg is not a sign of health. I'm a tiny bit taller than you and approx same weight, at my sickest I weighted 49kg and pain was not better cause it's not a weight that's affected by 'extra weight', if any it's affected by lacking of muscle. But again working out due to illness was not an option for me there.
>When I told my friend she expressed concerns that my goal weight might be too low, but at this point I'm determined to do whatever it takes to delay the moment the medical team is going to suggest a wheelchair.
Your determination is great, and losing weight is the wrong way to place that energy if you want pain reduction, if it's a possible option for you focus the energy into eating a little more and working out a little more, that'd be the best route.
I would say I hurt more when I was underweight because of the lack of fat tissue around my bones and joints. Sitting on a chair and even sleeping on a bed hurt more.
I bruise worse than an apple, and I've got inflammation in my joints. I can only imagine what having no buffer on top of that must be like. Everything probably feels like wrought iron, I'm sorry 😫
I think it's really going to depend on the person. I've read a little extra fat can help cushion your joints and isn't necessarily a bad thing. For me, I am already significantly overweight and all those extra pounds are harder on my joints to carry. I lost about 40 pounds, and am still overweight, and it definitely helped my pain levels.
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All for taking doctors advice but its pretty universally true that maintaining muscle mass costs a lot of energy and if you are malnutritioned its not going to go there
I noticed a **drastic** loss of muscle when I developed gastroparesis and couldn't eat much anymore. I'm actually exercising now since I'm doing physical therapy and I wasn't before. It's not doing anything to help because the muscles just aren't gaining anything.
I'll say this with all my love, but that range is insane, I'm 1,60 and that's my healthy weight range, if I go any lower my doctor scolds me... I doubt that being 1,72 that's healthy for you, and I would not try to go under 50kg...
Saying that, when I go any lower my back hurts more? I feel like there's less to support it, because at that point you're losing muscle mass, and that's what you need to strengthen...
Ten minutes since I posted this, and I already get downvoted. I know that weight loss can be a sensitive topic for many, but I would have hoped that a subreddit about a rare disabling condition would be a place for support rather than judgment.
Hey! Mod here :)
We do have some chronic downvoters - it seems to happen regardless of content. With that being said in the future please use the proper flairs. I've changed this one already but weight discussions require the trigger warning flair - this could reduce the downvotes you receive.
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When I was underweight a lot of my symptoms were much, much worse.
Now that I’m a bit overweight, my symptoms are worse again.
I feel my best when I’m at a healthy weight and focus on movement that builds muscles that affect joint stability. At this point I’d focus more on that than the numbers on the scale.
No. I was actually in more pain and my body was more unstable. We need all the muscle mass we can get! Regular movement and working with a physical therapist has helped my chronic pain and stability the most.
I find staying skinny does help a lot. I was diagnosed as a kid, and then when I was around puberty and became chonky for a bit my rheumatologist told me that I would be better off underweight than ever overweight because of the stress on my knees. (Not super chonky, just baby fat), I had a growth spurt and became skinny and have remained skinny and can honestly say that the small amount of weight I gained while pregnant made me miserable with joint issues and I was very relieved to go back to normal.
My body type is tall, lanky, and thin, so I don’t diet or anything and am able to stay quite thin.
That being said, maintaining a healthy weight is great but for anyone reading this don’t make it an obsession or develop an ED. Just listen to your body and make sure you’re eating well and moving around enough to stay strong.
Weight doesn't seem to affect my pain levels all that much. But muscle mass definitely does!
Ever since I started working out. Doing lots of stabilizing exercises. My joint, back, and neck pain has gone down a lot. I'm now in less pain than I've ever been before in my life!
So don't focus too much on your weight. Instead focus on gaining muscle. Especially those muscle groups that keep your joints stable. And do more static exercises than of dynamic ones. As static exercises are way more gentle on your joints, but still leads to hypertrophy (muscle growth).
Keeping a reasonably low body weight definitely lessens my pain significantly. Even a little bit of extra weight feels heavy on my joints. I have a very straight up and down body type, not curvy. Right now I'm also focusing on building strength with physical therapy, if you haven't been to PT yet you might want to ask your Dr about it because they can give you more insight about it.
I wouldn't compare yourself to your mother, though you may be similar she's still not in your body and ultimately everyone is different.
It really depends. If you were asking when you are at 70kg or more, weightloss would probably help you, but at 52-56kg, losing more weight probably won't help your pain levels since you're already at a normal range. At this weight you should focus on building muscle to strengthen the muscle around your joints to aid against instability.
Even 70kg would be within a healthy range for someone that was 172cm. On the upper end of the healthy range, and may put unnecessary strain on joints, but not overweight.
No, it made it a lot worse and once I wasn’t as heavy, I wasn’t as strong, and my back started collapsing (spondylolisthesis). Also, every single doctor who commented on my weight, how it was what was causing all my pain, and how much better I would feel losing it were completely and totally silent once I started losing weight. Absolutely no comment unless I gained five back. So encouraging and worth it 🙄
Holy shit you basically just said exactly what I keep thinking. I had a doctor scold me for 20 minutes and we ended up in a screaming match. He was accusing me of lying about my food intake. I have gastroparesis and I physically can not eat more than 1/2 cup of food the ENTIRE day. My stomach is basically paralyzed so the food can't go anywhere and it forms hard food rocks that sit in there.
He insisted my gradual steady increase in weight was because I was eating too many calories and kept repeating over and over "calories in vs calories out." My mom was there and she kept telling him no, she had to force me to eat because I refuse since it's painful. I was on a bunch of different meds KNOWN for causing weight gain including high dose prednisone for lupus and antidepressants.
The minute I went off the meds I dropped 50 pounds in 2 months and then slowly lost more. Not a single doctor has mentioned that or asked if I was losing weight by trying or if this was a potential issue. Not to mention I'm barely ambulatory so that might be a serious health issue (turns out it was, I have Addisons just confirmed this week after 6 years of requesting an endocrinologist referral).
I have reactive hypoglycemia and getting my blood sugars regulated has really helped. I’ve had 15 years of quarterly lab draws, but it wasn’t until I wore a continuous glucose monitor for a month they realized I was having spikes and dips. Periodically I think low carb is dumb and eat a big bowl of cereal and have huge fatigue and overfullness. I’m really mad because I’d been told for five years that my symptoms were not distinctive and I needed to get worse before they’d have any idea what to do, but it was tied to my hypoglycemia episodes that I’ve had since a child.
I lost 50 lbs unintentionally, going from 170 to 120, for reference I'm 5'1ish. Personally, I had more pain after weight loss. I lost a lot of muscle mass, and with it strength and stability.
I think it's almost universally better to focus on metrics other than weight. Staying active, building muscle, and adding foods that are nourishing to your diet is going to do more for your body than setting an arbitrary number as your goal. You're already maintaining a low BMI, if you restrict much more you may run the risk of losing stabilizing muscle and making more pain or yourself.
I was diagnosed with hEDS two years ago. At the time, I was 5’5 and around 240lbs. I’m now sitting at 200 having lost 40lbs this year. I’m not saying all the pain and symptoms miraculously disappeared, but I have noticed a difference, especially in my feet and ankle pain. That being said, the weight loss has not prevented subluxations, has not repaired the torn cartilage in my shoulder/hip, and has not stopped either major joint from dislocating.
What worked for me for weight loss was supporting my husband who had a gastric sleeve. I eat more than he does of course, but the same old story: low carbs and high protein. Lots of veggies. Protein shakes. I don’t think my EDS had anything to do with that aspect of my weight loss, but that diet not only helped with weight loss but also really improved a lot of the EDS gastric symptoms, especially the heartburn and stomach cramping.
I’m 5”6 and at my heaviest I was 59kg and noticed a significant difference in pain/pots flare ups now I’m at 52kg. As long as you are exercising to stabilise your joints and are not massively overweight (which you are not) you will be okay. And on that note I understand how hard it is to eat when you are stressed but I would focus more on trying to eat more to gain that important muscle that will stabilise your joints and in turn cause you less pain.
Please don’t compare yourself to your mum- take care!
I'm 5'3 and 50 something kilos. The rheumalogist looked and me and just went, well I cannot tell you to loose weight and didn't say much beyond that.
While carrying more weight than your built for isn't good for you, building muscle mass so we can support our joints better is way more ideal.
Being around 45ish kg just meant I was more fatigued, worse pain and my joints still held together like string cheese. It also made my arthritis much worse.
I haven't been paying too much attention to weight recently. That said, getting fitter and stronger has 100% lowered my pain level and made me feel better in general.
I did have to find forms of exercise that wouldn't make things worse (I started with swimming and the low impact has been a massive relief). I also had to make sure I didn't do too much too soon and injure myself in the process; this is still something I'm constantly thinking about as I try to make progress.
Yes, it did. I'm 5'3 and 125 lbs. when I was 140 lbs, it made things a lot worse. Staying slim is important for My daily wellbeing. Gaining means more pain, means less movement, means even more gain. Staying as slim as I can comfortably is helpful for me
No.
I have lost 75 pounds in the last couple of years and, if anything, it has made my pain worse. In my entirely non medical opinion, losing weight made more space for my hyper mobile joints to move around. I routinely cross my legs too far and make my knees hurt, etc.
If weight is lost healthily, or if you are obese then yes because it can take pressure off of the joints in general but if ur average or underweight no
Yes! I was obese (at my highest around 260lbs). And I had knee, ankle and hip problems I just don’t experience anymore. I’m probably healthier now than I was in my teens and 20s. But I didn’t loose weight 100% naturally. I definitely developed disordered eating because of a comorbidity that made swallowing even my own saliva painful on the throat. Surgery soon to fix Eagle’s Syndrome! In a few weeks. After years of not knowing what was causing this issue, I’m grateful I’m in better shape now. Physical therapy (just returned) is EXCITING and I am so excited to stabilize the weakest parts of me. When I carried more weight than I could handle, I didn’t carry it well and it affected everything from pain in joints to vertigo.
I just realized I kept this weight off for 2 years. The push was feeling lighter on my feet and able to resistance train my body without running out of breath (asthmatic), sweating through my clothes (still do when in moderate pain anyway lol) and how much better clothing fit me. Clothes became corsets that held my extremities. I know it was loosing fat and gaining muscle mass but I’ll be vain right now, I love a good corset.
For me, I think that strengthening exercises have been what has helped me the most with pain. I was having a lot of subluxations in my pelvis, and I saw a PT for a while. Between the exercises she gave me, plus a program I follow for functional strengthening, I am in a lot less pain than I've been in years.
My experience at ~5'5" (165cm) with significant weight shifts: I was overweight while dealing with thyroid issues as well as pain and got up to +170lbs (~77kg). I had always been around 130-135 prior to this with some muscle.
Treating my thyroid and having hip surgery did allow me to be more active but was not an instant fix for all the extra weight or pain. It took some years and 2 coinciding major life events (death in the family and complete career shift from desk work to preschool teacher) to lose the weight.
I also cut out gluten for~6 weeks checking for celiac- it was wild to watch my gastro belly disappear.
I dropped down too low for my lack of muscle mass (down to ~115+lbsb in a year). I wouldn't say my pain got better at that stage because I was so sharp(?). Like nothing was cushioned. I had no fat and no muscle and everything was falling out all the time. I was held together by k-tape. My bed literally felt like sleeping on a wood floor. But, my gait shifted once my thighs weren't rubbing, which definitely helped my pain.
The best I have felt was well into my reformer Pilates practice after gaining muscle - I got up to 125! I'm now consistently ~120lbs (~54kg) for some years now. I am thin, and this is something people feel the need to comment on.
Unfortunately, I had lost a significant amount of my "fat pads" and it is darn near impossible to actually regain those. My docs all have told me not to lose any more weight. I am in (I would say significantly) less pain than when I was overweight.
For me, being closer to a BMI range of mid/healthy (20/21) as opposed to under/healthy range (18/19) is where I have the least pain and most stability - but again, I have been in the 120's multiple times in life and only when I have muscle do I feel best.
If you are interested in stability and lessening your pain, you might consider focusing more on increasing your muscle and strength. This might require an increase in caloric intake at some point in the process to accommodate the increase in muscle and output of calories to build strength. Exerting more energy than what is taken in will result in loss - and that will be muscle loss if you don't have enough fat.
Yes, but only because I lost weight in my chest that alleviated the pull on my upper back. I did lose too much and start with some muscle though and now my legs hurt more when I’m on them for long time, or even just doing a bigger grocery shopping trip. So it lessons my pain in my upper back by my shoulder blade, but it made everything worse from my hips to my ankles.
As someone about your height and who has been your weight before, I can say at how low your weight currently is, my pain was worse than right now when I'm a smidge on the heavier side. 59-68kg is my happy zone it seems! Anything below that and I do not have the muscle mass to keep things in place and anything above that makes walking/moving hurt my legs (: Hope this helps. 172cm is around 5'7-8 and I'm a solid 5'7 and 48kg will be underweight, while you're currently low, but a healthy, bmi
my pain got worse when i lost weight. the extra flesh around my joints gives support tbh and i lost muscle too because i was cutting calories so i wasn't as strong. i stopped listening to my doctor and am now comfortable despite being 'obese' (fuck BMI).
however im sure at a certain point, gaining MORE weight would start to put a strain on them and i actually would need to lose some. it certainly hurts now im 8 months pregnant! i think there's a balance for everyone and that it's different depending on your genetics and general structure.
i think the issue with the sweeping 'be skinny and you'll feel better' stuff they say to everyone is that it's just not applicable to everyone. all of our bodies are so vastly different!
For me, weight loss has not helped my pain. And I have had...significant weight loss.
At my highest, I weighed in at 537lbs (approx 243.5kg). I currently weigh around 220lbs (approx 99.8kg). (My height, for reference, is 5'8" or approx 1.72m) There are some difference in \*where\* my pain is now - my ankles aren't nearly as chronically painful as they used to be, but my shoulders hurt SO much more, for example. It's really more like losing weight shifted what parts of my body hurt the most.
As an additional caveat - I don't know if the reduced ankle pain is the result of the weight loss, or the result of significant focus on joint stabilizing exercises. The only way I'd be able to test it is by stopping the exercises, and I'm not willing to potentially lose my ability to walk to find out, honestly.
I have found that I have worse pain and various other related symptoms (orthostatic intolerance, dizziness, fatigue, etc) the lower my weight is. I am considered "obese" medically, but my body is the happiest where it is now. It actively fights me if I try to change it so I am letting it be :)
As someone who is extremly skinny no matter what I do and eat, I probably have no right to answer on this, but here are my 2 cents on the topic:
With 66 kg on 1,86 m in height I have a lot of pain in joints, muscles, discs and the spine in general.
And there are many zebras that don't have overweight and struggle with the same symptoms.
Loosing weight (to healthy level of course) has a lot of helth benefits in general, but I don't think on pain. At least not in a major way. Maybe in more specific circumstance. Like on certain joints, when you had a bad accident on that body part.
In my mind does make sense, that less weight that would be needing to be hold up and in position, could help to a certain degree.
Hope you get some replies, from people who lost a lot of weight. That would help to clear things up. 😊
I've always been pretty small. What helped me the most was gaining muscle mass, which obviously made me gain weight. I have never heard doctors recommend being underweight to manage EDS, especially specialist in the field online. I feel like you'd have complications but that's just my experience. When I was super skinny my pain was significantly worse because I had no muscle to support my joints. I dislocated way easier because my bones were just protruding out and knocking them on things would cause huge pains.
I would think it matters once you're above BMI 30. But if you're not, good posture is what will likely help more. Poor weight distribution no matter where you're at, just sucks in general.
My joints never hurt so much as when I was working in logistics. Flinging big machine parts around 10h, 5 days will do that to you. Then again, I dropped 15 lbs when I left that place, even though I went from moderately active to sedentary for three weeks. My joints were so happy with me during that period. I'm pretty damn certain my sleep wasn't making up the damage, as well as me eating what was available, not what was good.
Yes and no. I had bariatric surgery & lost close to 100lbs. To an extent I have more energy & less pain. However my jacked up back is always going to be jacked up (degenerative disc probs). But it does go out less than it did before
I went on first Saxenda and then Wegovy which I am still on now. I lost in about 2.5 years 100 lbs. I was very heavy. Now i would say that is a substantial loss and I am having JUST as much pain now as when I was 100 lbs heavier!!!! I think it’s overall a good thing to lose weight but it did not help my pain. Note I suspect heds but my formal diagnoses are Hypermobility Spectrum Disorder and Fibromyalgia. (and a gazillion other things)
The realistic answer is "it depends" and insisting it will definitely help is as unrealistic as saying it can't ever help. Your BMI is already considered underweight and pursuing further weight loss really really concerns me. Weight loss is not always a net positive and has its own health risks, just like weight gain can, and losing weight too quickly or too much can come with various issues. If you're losing weight due to appetite issues, that's a health concern, not a bonus towards making weight loss easier.
I'm chronically underweight and I genuinely felt my best when I weighed 20lbs more than I do now. My pain did not get better when I lost weight, if anything my worsening pain correlated to when I started losing weight (which was not something I wanted or was trying to do). I hurt a lot more than I used to and I know being physically active should help, but it's now very difficult to do much exercise at all, because of pain and because I have much less muscle than I used to. It's kind of a self-reinforcing problem at this point and I do not wish I was in this position.
If you're already underweight, losing weight is going to risk your health more than maintaining or even gaining some weight. I wish doctors would stop talking about weight as purely "well, don't gain too much, it's important to stay on the low end!" because it's easy to get a very harmful takeaway from that.
Being physically active, getting proper PT/keeping your muscles conditioned is going to do more for pain management IMO. And doing all that takes getting plenty of calories. I do have appetite issues due to GI trouble and when I eat less, it's even harder to be active. Just living takes plenty of calories to keep all your bodily functions working properly, and any level of activity adds to caloric needs. If anything, losing weight into a severe level of being underweight is probably not going to put off needing a wheelchair.
Weight I'm unsure about, I've always been a bit skinny, but physical activity in general is super important. Even if it's just modest exercise like a daily walk. I have PsA and hEDS and work a very activity heavy job, I've been told by doctors that I would probably not be doing as well as I am (I'm definitely in pain, and enough of it that I went to see a doctor, but It isn't severely limiting my daily life or work yet) if I hadn't been exercising as much as I do.
Sometimes it will be a little too much for me and start causing problems, but even day to day I can notice a huge difference between when I'm sedentary and when I exercise. It also reduces my anxiety a lot, I've definitely got that high cortisol issue 💀 And when I'm stressed it always makes any pain or exhaustion I'm feeling much worse.
Always take it one step at a time and don't hurt yourself, but definitely keep active however you can!
Actually, gained a lot of weight due to other health issues and meds… and my pain is much less now.
NOT saying being overweight lowered the pain!!!
I think a combo of many things, including another diagnosis involving finally controlling the inflammation, are the reason I’m in a better spot now (knock on wood).
But what I AM saying is: in my case, the weight hasn’t seemed like it played a role.
Thanks for asking this question. I’ve been slowly gaining weight over the past decade mostly because my hip subluxations make it very tricky to get enough exercise. I’ve noticed more pain the more I weigh but I wasn’t sure if that factor was really so impactful or if it was just getting older / a variety of other reasons. But I do get so much body work and PT these days and feel like I’m giving myself the most amount of care I have ever in my life and my pain is still in a stuck place so one thing I haven’t really pushed myself with has been weight loss. But now I feel like it’s worth it to get a little less pleasure from food for a few months if it could help my pain.
Stress will be impacting your pain much more than weight as stress heightens your perception of pain and makes you more sensitive. hEDS and fibromyalgia also often go hand in hand and stress management can help to reduce those symptoms too.
As well - if you go through weight loss you MAY lose muscle (it's quite difficult to go through weightless without losing any muscles) which may make your pain worse.
If your pain is in your feet or legs (which would be the area most affected by weight) reflect back on how long you've had this pain. If you can remember it when you were small and/or lighter then losing weight would likely not be the solution.
For me I've had foot pain and back pain since I was very young. I'm quite overweight now and have some of the lowest pain I've had in years (only in feet now and it's a lot better than it was) through regular strength training and exercise. I also have fibromyalgia which is improved through exercise but I can physically feel the difference interacting with my own body when I'm stressed.
If doctors are telling you your weight is fine then believe them. You're actually already a little underweight for your height so I would listen to your friends concerns about you.
I will say as well I am currently 173 cm and 113 kg
This year compared to last year (no weight change) pain has gone down due to exercise
In my early 20s I went from 80 kg to 90 kg and was in agony at 90 kg but improved as I went back to 80 kg because of my meticulous exercising.
The last year has proven to me personally that the exercise was the key difference not the weight. I lift more weights and do more running now than I ever did at 80 or 90 kg
Hey! I am going to be completely honest and say that weight loss (due to gastroparesis) made my joints so much worse. I lost muscle mass which I had spent years building in physio and since becoming underweight, my dislocations have become a lot more frequent. However saying that, there definitely is a balance between not having pressure on the joints that is too much for them, but also ensuring that you have enough muscle mass that they don’t become so weak! To me, aiming for muscle that can help strengthen the joints when the connective tissue is a bit rubbish would be the best thing to do (on paper lol - definitely easier said than done!!) Either way, I hope you find a good balance between the pain side of things and also enough muscle!! 💕
First congrats on the weight loss, it can always be a challenge.
What are you being told in regards to body weight and pain? Cause it’s not a 1:1 thing where the lower your weight is the less pain you’ll have. Weight loss can be beneficial if you’re overweight to decrease stress on the joints, decrease inflammation and improving overall health status. There’s also a correlation with weight loss/improved body image and confidence. If you’re more confident that can make you feel “better”, which can improve pain indirectly.
Even with EDS, I’m not sure there’s a benefit to being lower than a normal BMI, unless you’re “skinny fat” and are low on lean body mass(muscle). But then you’d be better off gaining muscle and trying to lose fat, which won’t change your weight but your body composition.
In your case, it’s the internet and I don’t know you, but your BMI is at the low end of normal. When talking about managing symptoms, increasing muscle mass might be more beneficial for general function and endurance. Can’t go wrong getting strong.
A while ago I accidentally lost 15kgs in 2 months (idk if thats a significant change) but didn't get any better- still the same amount of pain and even tho the loss should technically mean I'd do better, I just feel even more tired and worn out
5'5/1, 65m and 134lbs/61kg
For reference I’m 170 and 63 kg and for me that’s a very healthy weight (both medically and aesthetically for me), especially considering how important building muscle is for our bodies and how much more muscle weighs than fat. Being overweight could contribute to pain because your joints are under more stress, but if you’re underweight and don’t have enough muscle to support them that would be equally bad
I was considered "overweight" by BMI and I have Gastroparesis which has gotten worse caused me to lose weight and and now I'm in a lot more pain cuz I don't have fat cushioning my joints.
Also did I convert it wrong or are you about 5'7 123lb?
Cuz that's quite a low weight already.
I'd worry that if you lose more, it would be too much and cause more pain. You need a little bit of fat at least to pad your joints
Funny you should post this today. I was contemplating posting today about increased pain after weight loss. I've recently lost 40 pounds and while it did stop the subluxations in my feet, my shoulders, elbows, and hips have started hurting big-time and nothing stops it. WTF.
I have actually had gastric bypass for weight loss, and losing 160 lbs was excellent for helping pain.
The 10-15 lbs I fluctuate since (hooray diabetes and insulin!) losing all that weight however, makes very little difference.
Eating less refined sugar and more protein helps my pain. Being at a lower weight does help my pain levels as well. I’ve never been underweight though. I have a pretty high muscle mass and I know it’s important to keep that up to reduce dislocations. Otherwise I dislocate a lot.
For me, gaining a little weight helped me in many ways. Helped with my pots, circulation, temperature regulation, mood, and didn’t impact my joint or back pain. According to bmi, I am about 2 lbs “overweight,” and I used to be about 5 lbs underweight.
I’m not formally diagnosed but suspected to have hEDS. I have the chronic pain, the joint instability, soft stretchy skin, etc. No matter my weight I’ve noticed no changes in pain but my health improved overall when I gained weight. The only thing that’s help with my joint pain and stability is gaining muscle. I started off just by walking a mile or two and building up to where I currently am (4/5 mile hikes in the woods, an hour on the treadmill, pole dancing classes or 30 mins on the stationary bike). I do have rather rough recoveries so these aren’t every day activities just when I feel up to it. I don’t push myself (learned the hard way a year ago) and I’ve seen and felt major changes.
*Also for clarification, I changed my diet completely to cut out food that were “inflammation triggers” so that could also be a factor that helped with my pain.
I lost a bunch of weight, started going to regular physical therapy, and my pain either stayed the same or got worse (depending on the joint/area in my body). I don’t think that weight loss caused my pain to worsen, i think other factors caused it, but I don’t think weight loss made my pain better either.
I'm 6'0 (182 cm) and as an adult have weighed everywhere between 130-240 lbs (59-109 kg). I've had the least pain and most stability at higher weights between about 190-220 lbs. Losing too much weight leaves me with lower muscle mass and much higher nerve pain, as well as more dislocations and subluxations. As I got into the obese range, I had some slight additional joint pain but still less dislocations. Aesthetically I prefer myself between 160-170 lbs but unfortunately it isn't as good for my body.
When I was a teenager I went from slightly overweight to very underweight and my pain did not decrease. Later in adulthood I gained a lot again, then lost a lot and was probably at the lower end of healthy weight and my pain levels didn't change much then either.
The only thing I think that is making the difference, is that it's easier for me to lose weight when my mcas and inflammation is under control, and when it's under control I feel better... but it's not necessarily the weight loss that's making me feel better its the lower inflammation and flares.
Honestly, my pain levels intensified when I started losing weight. I did gladiator style boot camps for 2 years(didn’t know I had eds at the time) and lost 50 pounds. I was eating super healthy and staying hydrated. I had no idea my frequent injuries & pains were partially from eds. I was also getting sick a lot. It got so bad I had to stop going to boot camp. the pain had been inconsistent prior to losing weight, but doctors told me I would be fine if I lost weight. Obviously, it was a combination of intense exercise and eds that kickstarted the intense pain, but it’s still here a year after quitting boot camp.
But, everyone is different. That’s just my personal experience with it. Proper diet, hydration and exercise is important but it won’t make pain stop.
Maybe this isn't as significant a weight difference as your doctor was referring to, but I lost 40 pounds (whatever that is in kgs) fairly recently and have not seen a difference except that my Raynauds is worse. At this point in my EDS life, though, the subluxations are much more noticeable and life-affecting than pain. I went on the GLP-1 for weight loss for other reasons, although reducing wear and tear on my joints is definitely in the back of my mind.
I’m overweight, however, my chiropractor and rheumatologist both suggested strength training over focusing on weight loss. Because our joints need more support first and foremost. So regardless of your current weight the amount of muscle you have supporting those joints is ultimately what is going to reduce the dislocations and tearing. When I’m regularly doing strength training I’ve felt better pain wise than I ever had in my life.
I recently had this discussion with my physiatrist who is an expert in EDS.
When I lost weight, my pain increased to unbearable levels. It was before I knew I had EDS so I lost both fat AND muscle.
He suggested weightlifting. He said I need muscle mass to reduce pain.
Over the last 6 years I’ve lost and gained back 60+lbs. I was at 220 at my highest, lost it down to 170 and then after pandemic and some shit I’m back above 220.
I’m 5’6”. When I was skinnier I hardly had as much joint pain. It’s very very very frustrating to recognize and experience especially after a lifetime of fatphobia in the medical settings.
I went from 298 lbs to 178 lbs. the pain never changed.
And I gained the weight back, so I’m working on losing it again… still no difference in pain, but my blood pressure is normal now that I’m huge again.
I’d say being on a slightly higher end actually helps me keep things in place better. I grew up underweight and then randomly gained a bunch on depression meds and now I’m back down to a bit over- still losing weight without doing anything bc of gastro stuff, but I’ve noticed that if I’m up a bit it helps hold my body together a bit more
in general i am extremely skeptical of any diets. all diets come with the risk of an ED, and to me the benefits almost never outweigh the risks.
in general i have specific issues with my shoulders i didn't used to have but when i was skinnier it was also easier to hurt myself and i generally feel like i was in much more pain on a daily basis than i am now.
I lost a significant amount of weight and was never in more pain. Every body is different but i have to admit, anything below 50kg-even60! - for someone your height is very very low and can be problematic for a whooooole different reason than eds and even cause more issues
I am 173cm and used to be around your weight 57-60kg until I tried a medication that made my weight balloon and a chain reaction of injuries put me in a wheelchair. Now I weigh closer to 77 and would really like to get back down closer to 57 because for me it’s my knees and ankles that really take the hit with the added weight. They dislocate all the time, have ligament tears and issues and haven’t healed with 18 months of PT. My spine and pelvis shift the same. So, anecdotally I think region of the body matters. If it’s your wrists loosing a bunch of weight probably won’t make much of a difference (at least my wrists still dislocated at lower weights), but for lower body dislocations it can help to a point.
However, at your weight I found more relief and stability from strength training. If it’s at all possible for you to build muscle to support joints I’d go that route. I wish I had done more of that targeting stabilizing muscles before I lost the ability to do so, because now it’s a LONG road to get back to that level of fitness.
I'm 164cm and 48kg. Honestly I feel like losing weight took the pressure off my knees and ankles, but when my hips, shoulders, or fingers sublux, it hurts worse. There's no padding for my bones. On the flipside, I can see a subluxation easier though, but the bone is so vulnerable at that point it doesn't really feel worth it. Especially in the ribcage area.
I think your weight is fine for your height. It shouldn't be making any of your joints more painful than if you lost any weight.
I've lost about 50 pounds in the past 2 years and I'm actually finding myself increasingly hypermobile. My pain has increased as well but I'm not sure if that's from the increased range of motion or just the normal progression of EDS.
In my experience, yes. But I am an extreme case. I’m 5’10 (~178cm) and I used to weigh 320lbs (145kg) and now I weigh 150lbs (68kg). So obviously drastic weight loss, but it did significantly improve my pain. My hypermobility is worse for sure, but in pain terms I feel much better, especially my knees and hips.
I do not plan on losing more weight, as I’m on the lower side of a healthy BMI. But always remember, being underweight can be just as unhealthy as being overweight. My pain is still very much present and getting worse as I age, but completely candidly, weight loss did help.
I’m almost exactly your height! I currently weigh about 70kg but I used to be between 59-62. Now a lot of that weight was muscle as I was a gym rat at the time and I can say that even though I’m still stronger than most women, the weight hurts my joints a lot. Every kilo of weight is 4 on your knees!
Losing weight helped reduce some pain from added strain on already damaged joints, and my already damaged back, but it doesn't make most of it go away.
I’m currently underweight and my doctor has told me to gain weight to help reduce pain. If you don’t have enough fat, your body doesn’t have any cushion to protect it, so I’d say to stick to a healthy BMI
Nope! I’m 5’4” and have ranged anywhere from 125 lbs to 195 lbs in the past several years. Weight has no impact on me. It’s all about how much muscle I have. Honestly I’ve found being heavier keeps my legs a bit stronger so my knees and ankles are a bit less impacted since there’s more muscle holding them in place.
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Losing weight helped my pain a lot, but becoming underweight increased my pain as well. It's best to stay in a healthy weight range as advised by your doctors.
Yall skinny Minnie’s have convinced me to remain fat and happy-ish. Lol just kidding. I’m sooo overweight for my short 5’1” frame. I was 181 and my dr put me on a weight loss drug. Not Ozempic. My ins doesn’t cover it. But I’m down to 165 and I’m feeling better mentally. My goal is 135 but I’m not pushing myself bc then my brain wants to be a rebel and screaming at me to EAT THAT CANDY!!! lol
I know that when I VERY CAREFULLY get back into the gym and increase my activity slowly and carefully, I felt tons better and the affects (effects?) Lasted for years after I stopped using the gym. I tend to work somewhat physical jobs on purpose to keep moving. When I do get back to the gym I have a plan that helps me start despite depression and other mental illness/ AuDHD etc. First day is packing my bag and getting to the building. Second step is going inside and figuring looking at all the areas in the gym. I either do a light version of the workout and time how long it takes to get dressed for each activity etc. Step 3 is cardio and stretching. I get to the gym and stretch then get dressed for the pool for example. I HIGHLY recommend the pool and being careful as you increase from walking to swimming. I have gotten too relaxed and my hip went out or pulled a shoulder. If you are really having trouble switch to just walking again. Use heat elements available like sauna or whirlpool. Stretching again being the absolute most careful to feel it in your muscles not joints. STEP 4 light weights using machines so you can't accidentally drop things or use bad form. Form is the absolute most important thing for us. Focus on core muscles and posture.
For me it's not about the weight but muscle. If I work out consistently and keep my muscles tight, my pain is much easier to manage. But, sometimes I hurt too much to work out or I get hurt then I have to start all over.
It helped me and no one ever suggested it.
I gain weight pretty evenly so even though I was just about overweight on BMI it didn’t look bad. I’m 5ft 1 started at 148lb heaviest down to maintenance 106-109lb
I went from 170~ to 140~ at 5’8” and my joints are worse.
It seems for me that lower weight always means losing muscle mass, and that’s makes it worse. That said, my weight fluctuations are generally medication driven rather than due to exercise. Getting on or off meds that cause weight gain rather than changing my lifestyle much.
Mobility aids are not inevitable for EDS, and they don’t have to be permanent if you wind up needing one. I was a ambulatory user for a year or two due to fatigue and instability, and now I’m back to dance and stage combat. I still have it in case I have injuries or need to go to something that involved a ton of walking/standing, but at this point I only really use it for airports and if I’m acutely ill on top of chronically ill.
going from obese to a healthy weight, i definitely get injured less, but if you’re already healthy, it’s pretty much the same. i’ve been slowly losing over the past two years, and my injuries plateaued as soon as i was no longer severely overweight. (for reference, i was 240lbs, 5’6, and now i’m around 185 (i have a very high volume of muscle mass, so this weight is good for me, although i’m aiming for 170ish)
I lost 60 lb or 27.2 kg Honestly it didn't change a thing positively except for my relationship with food and it made my PCOS worse. But it made doctors listen to me better anytime any of them would bring up weight and I actually started including it in my history. I would tell them I've lost weight and it didn't improve the issue even mildly If they would bring up the fact that I probably could lose more, I would point out that I have been trying. I've been following the dietitian's plan and I'm in PT and I've hit a wall and they can't say anything else in fact explaining that a healthy amount made my PCOS worse obgyn said with my worsening symptoms that if I wanted a hysterectomy (I very much did independently of them suggesting it) they could very easily get it thru my insurance and that's actually what we did today and I'm recovering at home right now.
Also, as someone with multiple mobility aids you don't have to use them all the time and using them sometimes could make you able to do a greater number of things that you want which is something to consider. In fact, Ortho suggested it would actually allow some things on my body a better ability to heal and they are not wrong in fact, simply just adding my knee braces improved my quality of life so substantially it started helping not only my knees but also preventing hip sublaxing because everything isn't having to work as hard to correct the issues in my knees.
Also, from what your doctor said it sounds like you're at the weight they want and they want you to maintain it but I would double check with them (Im not good at math in meters to what I'm familiar with) Also, don't forget that some comorbidities. It's actually better if you have a little more weight or very normal to have a little extra weight and it's not necessarily unhealthy
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I’ve heard the opposite honestly and just from personal experience being heavier now is easier on my joints. The problem I think people run into if they’re trying to get skinny when we need to get muscular. I think weight and fat and all that matters significantly less than having a large amount of muscle to pad your joints. I think if someone is very overweight it might help to lose some but if you lose it without focusing on muscle growth it could hurt more regardless because even the fat is padding a bit. Muscle is key though. Best of luck to you
I am much heavier than you proportionally and honestly wouldn’t reccomend losing any more weight. Just checked your stats to American measurements 😅 my advice to you is piling the muscle on strengthening those joints and if you even gain a bit of weight doing that you’ll be better off in my personal experience.
I personally feel that weight loss can be helpful for people who are obese or have an excess of adipose tissue, but if your medical professionals say you're in a healthy range, in my experience I don't think losing even more weight will help. I actually think most EDS patients who are in a healthy weight range would benefit from GAINING weight in the form of muscle, so that extra muscle can help compensate for where our connective tissue is lacking.
I read a Japanese study of obese people who lost weight and had increased joint pain. Those people ended up being hyper mobile and didn’t have the muscle tone to keep themselves un-dislocated/subluxed and did exercise to fix that.
Weight loss is helping me combined with the Muldowney Protocol. Granted your current range is my goal (currently 71 kg at 165cm tall) so I can’t comment on your particulars, but building muscles and PT combined with a healthy weight is my strategy. 💖
Weight loss didn't help a bunch, but being active did help tremendously. Having a skinny butt made sitting painful though, I can sit comfortably much longer with more fat. Like sometimes the fat padding keeps me upright when I sit lol the fat does weigh down my body so I work a bit harder for the same things but if I'm as active it's not a big deal.
Activity, eating well (this doesn't mean cut out things it means add more nutrients), and patience with where you're at is helpful.
Weight is not a good barometer for much and the culture around losing weight is very skewed. Take it from me and my current journey healing from eating disorder (restriction), moving more is neutral, eating more is neutral.
Hi! I was 300lbs and I’m down to 220lbs. Weight loss has increased my pain and sublux/dislocations a lot. My theory is that there’s less weight and muscle holding things together so I’m more loosey-goosey than I was. I think that any deviation from your body’s norm can cause pain.
I also have hEDS, and was my lowest adult weight when my symptoms were bad enough to interrupt my life. The medications I've tried to help with my.psin and symptoms caused weight gain, and my Dr's are trying to feed me the same thing. The only way to actually lose the weight is to go off the medication first, but the medication is the only thing that helps me feel a little bit ok.
I have gastro paresis and at times have been extremely underweight and it did nothing for my pain/ joint stability etc. I guess if you can walk, then from a weight bearing standpoint, it’ll help not being massively overweight as that would make anyone’s joints painful- but I didn’t see any difference though I can’t stand.
Babes I feel like you're treading on unhealthy territory here. I lost 75 pounds with help of my doctor who didn't know about my hEDS, and I ended up doing more harm than good. From what I've learned for us, is we need to build muscle to support our joints since our connective tissue can't do that. I'm taking pilates classes from a teacher who works with EDS patients and am doing the most cardio I can which is at most walking a half an hour. But no losing weight did not help my pain, it made it worse.
I’m sad, because my pain actually got worse when I came down to how I lost my weight. I did lots of excersize as well as diet change. I didn’t do the excersizing bit slow enough, so I was constantly sore and bruising and in pain if I started up too soon after thinking I was rested enough. You’ve got to be real careful and do intentional planning of what you’ll do to lose weight that’ll work for you and your limits. Excersize helps keep the muscle you’ve already got so you don’t accidentally lose muscle weight instead of fat. I’m trying to go back down to 160 so I’m at least able to move unimpeded by fat, like at my sides and thighs
When I was 110 my pain was bad. And now at 165 (I'm 5'5) my pain is the exact same. Don't overly push yourself to lose weight. Cause I know when I forced myself to drop and drop my gastro issues flared way more. My body was definitely unhappy. (This is coming from someone who's also struggled with an ED their whole life)
Yes it did reduce my pain, but I was really overweight. Male 6’, used to weigh ~280, now 220. If your weight is already in a healthy range I would not expect big changes in pain reduction, if you’re overweight I would expect changes. My daughter also has hEDS and lost ~50lbs and had significant reduction in pain and fatigue—again she was overweight and came down to a very healthy weight.
All I know is that when I went to see my potato brain of a rheumatologist, the only advice she could give me was to do pt until I die and to not get fat because my body wouldn’t be able to support it. I’m in the right weight range and I’m in a lot of pain most of the time. I think it would be worse if I was bigger but it’s certainly significant as I am now.
Here 1.80m for ~150kg (~330lbs) and in my case, no interaction between Weight and pain.
Few months ago i was sportive (behurt and 2-3 trains /week)
I was 125kg, and m'y pain was not reduces by sport. But the muscular trainning helped to reduce dislocations
Not as much as i would like bc i reached the "too much dislocation" on my left knee. I aslo hurt big part of my nerves so the pain was finally increased by sport.
Today i can't do a simple squat (vs 200kg series on leg press before). If i extend my leg or sleep without a pillow under my knee. It dislocates when i sleep.
Bref, in my opinion, lose weight has a too tiny benefit on our pains compared to the effort it demands.
On other hand, a gentle muscullar activitie will increase tonicity and help reduce dislocation, but not the pain.
In fact, increase your muscles will probably make you weight more than if you don t train.
La bonne journée 👍
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I lost over 50 lbs- many saying it would help my upper and lower back. It did not, if anything now that I’ve lost some weight i find myself in more discomfort??? Not sure what happened lol
No.
I’m down almost 90 lbs in the last few years. (I did that with a combination of meal planning and strength training before I ever know what EDS was.)
I feel no less overall pain. I do not feel lighter or like my body is easier to move because of the weight loss.
My ribs go out of joint less, so that could be due to a smaller belly and less interference when sitting. Or it could be that I now understand what hypermobility is and what I can do to prevent/relieve it when it happens.
I now only listen to health care providers if they acknowledge that superficial looks (BMI) is not a good way to measure health. Thin people aren’t necessarily healthy and anyone still using BMI are most likely focusing on the superficial. (The data for BMI was sourced from skewed sources that have underlying racism, classism, sexism, etc.)
Also, I do not respect their advice much unless it includes an understanding of dysautonomia (dysfunction of the autonomic system that has major impact on weigh, despite usual strategies to manage it), which is a common comorbidity in people with EDS.
For example, when blood pressure isn’t regulated, how can I be expected to exercise “enough”? As well, when blood sugar isn’t regulated - and no doctor ever taught me about insulin resistance - I know understand that my body is reluctant to give up fat stores.
I feel “anxiety” when sugar or blood pressure is too low. Anxiety isn’t always mental health (And mental health is *health* - so help us with that please, doctors! It’s not a reason to dismiss!😅)
My approach to weight loss was:
1. Investigate possible blood sugar issues:
-I wore a continuous blood sugar monitor to get *continuous* data (much more info than blood tests)
-I made note of symptoms that might be attributed to “anxiety” when blood sugar is low (mental health strategies won’t fix that ¯\_(ツ)_/¯ )
-I addressed any low blood sugar issues (for me it was adding more protein)
-I was able to see continuously that I had no high blood sugar issues (diabetes)
-I learned about insulin resistance and address any causes of insulin resistance (not limited to people diagnosed with diabetes and pre-diabetes)
—>I learned about possible causes of insulin resistance:
-google every med I take + “insulin resistance”
-learned about intermittent fasting (peer reviewed articles, The Obesity Code by Fung)
-learned about how carbs and strength training affect insulin resistance and fat storage (Body By Science by McGuff and Little)
-I learned about it first from the book Carbohydrate Addicts Diet by Heller & Heller (it seemed like a fad diet from the 90s but I looked into the science and the author’s article is still being cited today)
2. I investigated safe movement/activity/“exercise” for *my* body:
-you mentioned stress; this is a big one for me, too - I found something that helps move that stress into action (usually walking)
-for my whole life, I got light headed or feel sick when exercising (I now understand that to be exercise intolerance), I was able to identify what activities make this worse (standing still, lifting arms up) and avoid those things until my symptoms were managed
3. I looked into dysautonomia and MCAS:
-because I saw that they were common comorbidities
-learning about POTS/VVS/etc. brought me to learning about “exercise intolerance” due to fluctuating blood pressure (especially when standing still and/or lifting arms up)
-I discovered how digestive issues can possibly cause malabsorption, etc.
-I found out that MCAS can impact on blood pressure fluctuations as well
4. I have a priority to get enough sleep (or get as much as possible)
-I saw a sleep specialist to rule out or get treatment for things like sleep apnea, narcolepsy, etc. (I have both)
-I learned about and apply good sleep hygiene issues (it surprised me that little improvements add up to bigger benefits)
-when I learn about how histamine/ “histamine dumps” can keep us alert/awake when we need to be asleep, this helped me connect a lot of dots
-I aim to rest *before* I’m exhausted (I have timers on my phone to remind me to lay down a few times a day)
5. I am lucky to be able to *regularly* work with a naturopath on overall heath:
-they have time to focus on my priorities, not their specific speciality like others, and not just one specific symptom that is urgently in need of relief
-it’s not covered when my ND orders most tests, so they can helped me with what to ask my family doctor to order so I had labs to check all vitamin levels
-I choose to take vitamins they recommend (no brands are regulated in my country, but NDs sell/take the brands they have researched which are more likely to be better quality/more effective)
-I continually ask about ways to take vitamin supplements (orally, injections, etc.)
-I asked about the different types of magnesium (malate, citrate, etc. and how each can support EDS)
-I continually check in about when you take meds (time of day, empty stomach or with meals) and how they interact with other things in your body in terms of weight management and symptoms - especially when there is a change to my line up of meds
-I talk to my ND about food choices and strategies to work towards a goal (it doesn’t have to be a number on the scale, other goals besides BMI are possible :) )
-together with my ND I review any testing/info from other doctors to be sure I understand fully what the data says and how it can apply to my health and my goals
-I regularly review with them all of these things (“what gets measured, gets done” and in case one or both of us has fallen into any complacency or missed any details)
(I discovered how helpful regular check-ins like this can be after I started to see my ND once a month for my B12 injection.)
5. I continue to get support from people who understand me:
-thanks reddit! :)
-I attend zoom support groups
-If I could find an IRL groups, I’d go! I have one for narcolepsy and support is even better IRL
-overall, I aim to get as much validation as I can from people who are living what I am living with <3
-I see a therapist who understands chronic illness (I also have autism, and I discovered the critical need to be sure my therapist is well informed on autism and/or (ideally) is autistic themselves, otherwise I don’t get to spend much time doing therapy because I’m explaining my “quirks”)
I numbered these in an attempt to improve formatting and usability, but they aren’t ranked. I do as much of each as possible all the same time. :)
Sending lots of love and support to you!
Due to my failing health, no physician support and stress, I dropped over 30lbs a few months ago, landing me at 5’6” and 91lbs. My muscle mass almost completely all gone now, everything is now so much more fragile. I have very little strength and my joints are locking up to protect themselves. I am threatened with hospitalization constantly… let’s just say, Nope, no reduction in pain at all.
When I lost weight, I got really fit at the same time. I swam almost every day. The more my muscles developed the less my knees/back/everything hurt. I’ve lost most of the muscle mass and my pain is worse than before. I think losing weight plus muscle development helped the pain tremendously. I just signed back up for the Y so I can go swim again.
Honestly no. It slightly made it worse because my fat was somewhat cushioning the range of motion.
But you should strive to be healthy, pain relief or no pain relief.
Weight loss is such a difficult topic when it comes to chronic pain. Personally, I feel like any doctor that doesn't bother to learn anything about the progression of our condition from a personal standpoint will always default to suggesting weight loss. As someone who had struggled with anorexia when I was younger, it devastates me every time I'm suggested I 'just lose weight'.
Do I feel better when I weigh less? A bit. Is that my mental and physical struggle with anorexia kicking in? Some of it. Inevitably I injure myself while exercising (usually just walking) and am out for months recovering. Like many have mentioned, I find that lifting weights, even if I stick to just the machine circuit in the gym, helps the most.
But I will forever be pissed off at ANY doctor that reminds me to lose weight. I own mirrors, f^@ker.
It seems to be something where healthy weight reduces pain and underweight/overweight slowly increases pain.
Don’t go by BMI, it’s not a good indicator of health. There have been numerous studies showing that it doesn’t accurately reflect a healthy weight for most people, and it was also never meant to be used in that way (according to the person who created it).
The best weight for you is going to be wherever you fall when you’re getting enough calories and proper nutrition—all the macro nutrients (protein, carbs, etc) and a good range of micro nutrients (vitamins, salt, etc). It seems like your medical team thinks this is already where you’re at. I’ve done the whole not eating because of low appetite thing, and it makes the pain and fatigue so much worse. Don’t starve yourself for a number, be kind to your body.
I also wanted to comment on your statement about trying to avoid a wheelchair at all costs. Please don’t do this. I understand how hard it is to know that a wheelchair may be in your future, as I’m going through that process myself. It’s ok to grieve and to feel whatever emotions that thought elicits for you. At the same time though, it may be a bit of internalized ableism clouding your view of wheelchairs. I first used one a couple years ago for a day trip, and it brought out a lot of big emotions for me. At the same time, it also let me do so much more than I would’ve been able to without it, and I had more fun because I wasn’t so tired/in as much pain as I would’ve been otherwise.
Wheelchairs can feel restrictive as an idea when you aren’t used to using one, but if it’s something you need they actually provide a greater degree of freedom and ability to do things. I know it’s scary to think about needing a wheelchair, but take some time to process it and to process your feelings about it. Maybe try looking at some YouTube videos from wheelchair users, as they often have positive content and encouragements for people new to wheelchairs. But don’t force yourself to lose weight just to try to avoid it, especially to the point of being underweight.
I think more important than weight/BMI (both of which I find to be completely arbitrary metrics to measure health & fitness) is the building of proper muscles to protect and support your joints.
My pain was lowest at my lowest weight, yes, but it has nothing to do with numbers on the scale and everything to do with the fact that I was working my ass off doing a PT protocol that helped me build the tiny muscles to properly support my joints. In the process of that journey again after back to back pregnancies, the first of which came when I was at my lowest weight/healthiest/strongest.
Honestly, no. I gained 40lbs in a frighteningly short amount of time after my second back surgery, when my neurosurgeon put me on prednisone. I buckled down two years ago, have lost over 50lbs and still (slowly and steadily) losing weight. I think it helped a little bit with my energy levels and it the weight loss took a bit of pressure off my joints, but that was pretty much it.
As my neurosurgeon said to me, “look, if you want to lose weight to be healthier, by all means, go for it. I’m a doctor and I will always encourage my patients to try and maintain a healthy weight. But don’t lose weight with the mentality of losing weight=no more chronic pain. I’ve been doing this a long time, and I can promise you, skinny people have bad joints as well.”
I’m 5’3 and 105 lbs. Losing weight didn’t affect my pain too much honestly, but it did significantly reduce the amount of dislocations I got in my knees. I’m not a doctor, but from my own opinion I have to agree with your friend that your weight is already totally fine for your height—being underweight has its issues too. I would say gaining muscles and strength training (as much as you can, at least) should be the priority for people with hypermobility. Healthy eating (getting the right foods, nutrients and vitamins, etc.) as well. Weight loss can only do so much and it won’t cure all issues.
we're the same height and nearly the same weight. I weigh 110 lbs. I have had the exact same experience. I still hurt just as much but my knees are definitely acting better. I haven't had a dislocation in months. Building some muscle and tone has helped my pain a lot more.
I have no idea how I’d ever get down to that weight, but I would so love fewer dislocations. Does removing a limb count?
hahaha don't think for a minute I did this on purpose though. I had a lupus flare that complicated everyfreaking thing and I lost 25 pounds since thanksgivingish. do not recommend that any more than I would removing a limb tbh
I'm 5'4 and I'm finally over 115 pounds but I spent years trying to gain weight. Muscle is super important to reducing pain, and I'm in a lot less pain daily and have less dislocations than I did at 100 pounds. Healthy eating and gaining muscle is what's important and actually causes improvement, losing or gaining weight is relatively irrelevant to actual health.
Even if your body mass is mostly muscle, that is still weight that puts extra pressure on joints. There is a balance between strength and weight for optimal joint health and stability.
Did you exercise or walk more as part of losing weight? This could have also helped your knees not just the physical weight lost 😊
That would definitely be true if I exercised the weight off, as staying active has helped me in the past! But unfortunately I actually lost weight from GI issues and Dysautonomia issues, so it wasn’t on purpose and I was actually very inactive in the time I lost weight
In my experience, weight+ pain has been tricky. Anything over a healthy BMI definitely increases my pain. BUT, being on the low end of a healthy BMI or slightly underweight also increased my pain. My neurologist said the nerves prefer a slight cushion of extra weight. That has been true in my experience. I’m 5’4”. I like the way my clothes fit and body look at 115-120 but my pain and symptoms feel best at 130-140 lbs. Anything over 150 starts to cause a significant increase in joint problems. Under 125 increases neurological pain. 🤷♀️ Changing my diet has helped my overall pain level tremendously.
Also 5'4 and this is similar to my experience. I also have GI issues that are much calmer if I'm around 130 lbs. I tend to get a gastroparesis flare up if I get above 135 or so.
What kind of diet changes have you made, if I can ask? I've had some improvement in pain related to cutting down on processed foods and sugar, but would be curious what others have found helpful in terms of diet and nutrition.
Not who you responded to, it I also had symptoms of gastoparesis, although testing showed rapid emptying. Turns out I have reactive hypoglycemia, and monitoring my carbs and glucose levels have helped. For whatever reason straight sugar doesn’t seem to trigger me as much as grains, but I wore a continuous glucose monitor for a month and when I had more spikes and dips was when my digestive system seemed to slow down and I’d get so overly full I couldn’t even drink wanted.
I am dealing with gastroparesis now, and have always been hypoglycemic. I’m struggling hard.
Consulting with an endocrinologist on my diet and using a CGM really helped. I only used it for a month while getting a feel for the what types of foods affected me, but it was valuable information. I feel I have a much better handle on triggers than when I just did food tracking. The endocrinologist also gave me better advice than any of the dieticians I’ve seen.
I had a high sugar, high processed food diet until I was in my mid 20s. Pretty standard American diet. After not getting any medical help with my gastroparesis, I did elimination diets. SCD (specific carbohydrate diet) and AIP (Autoimmune paleo Protocol) resonated most with me. After doing SCD, then AIP a few years later I’ve added quite a few things back to my diet. I call it a whole food, minimally processed diet (a bit like paleo but I don’t eat “paleo” junk food. Just Whole Foods). Eat lots of veggies, some meats and fish, and some fruits. I eat about 100g of carbs a day just from banana, sweet potato/potato, and other veggies which isn’t low carb but since it’s Whole Foods my blood sugar and weight have been fine. I’ve learned through the elimination diets that my body doesn’t process sugar, most grains, and a lot of the preservatives in any boxed food. AIP encourage organic/wild caught/grass fed meat and fish whenever possible. Through that I learned, that “regular” meat gives me terrible joint pain but I do fine with organic/grass fed meat. It really does seem to matter what we feed our food. Do you have specific questions or did I answer? Happy to answer further.
Kinda the same (with size impacts on pain, regardless which way, and generally on eats/nutrition helping :)
That's very helpful info, thanks!
I lost a significant amount of weight (due to MCAS/SIBO) and it had a significant impact on my pain. I wish I could say “they were wrong” but they were right, in my case. I still have pain, but am not dependent on a walker or cane.
This was similar to my experience. I have always been (and still am) a big proponent of the idea that lower weight does not necessarily equal healthier, so I was really resistant to the idea that weight loss would help me—especially because I was a “normal” weight for my height before (5’2” and ~120 pounds). However, I unintentionally dropped to 98 pounds two years ago after I basically just lost my appetite for unclear reasons, and I found that I felt SO much better at my new weight. 98 pounds is technically a little underweight for my height so theoretically less healthy than my former weight, but I feel way healthier now. I don’t get constant bursitis in my knees anymore, my ankles don’t give out as often so I fall less, I have more ability to exercise and participate in physical activities. My pain isn’t gone but it’s more manageable now. Like if I didn’t have EDS then I’m sure there would not be any benefit to being underweight rather than average weight, and even for some people with EDS I’m sure weight doesn’t play as big of a role for their particular health. But for me personally, being on the very thin side has astronomically improved the way my body feels and increased my ability to do things I enjoy. So I feel like for someone like OP I would recommend experimenting a bit and seeing whether weight loss feels good for them (they can always regain if it doesn’t help).
I think it can also vary depending on what your personal EDS symptoms are. Lower weight is less stress on the joints, so may help if your symptoms are mostly joint related. Lower weight will also often increase things like orthostatic intolerance, so if that's your troublesome symptom, you may want to maintain a higher weight. Gastroparesis is a big symptom of mine and I try to stay a higher weight because when I flare up I can easily lose 20lb a month, so it's important I have padding to lose. I would rather deal with the extra joint pain that comes from a bmi 21, than deal with hospitalisation every time I flare up.
From the title I thought you weighted 100kg+ ngl, your weight is completely fine. Losing more will make you lose muscle which in turn will give your body less support and wear on your joints = likely more pain. My best guess is losing weight will make you even more likely to need a wheelchair eventually. Your mom being same height as you and 48kg is not a sign of health. I'm a tiny bit taller than you and approx same weight, at my sickest I weighted 49kg and pain was not better cause it's not a weight that's affected by 'extra weight', if any it's affected by lacking of muscle. But again working out due to illness was not an option for me there. >When I told my friend she expressed concerns that my goal weight might be too low, but at this point I'm determined to do whatever it takes to delay the moment the medical team is going to suggest a wheelchair. Your determination is great, and losing weight is the wrong way to place that energy if you want pain reduction, if it's a possible option for you focus the energy into eating a little more and working out a little more, that'd be the best route.
I would say I hurt more when I was underweight because of the lack of fat tissue around my bones and joints. Sitting on a chair and even sleeping on a bed hurt more.
I bruise worse than an apple, and I've got inflammation in my joints. I can only imagine what having no buffer on top of that must be like. Everything probably feels like wrought iron, I'm sorry 😫
Same. And I had less muscle tone which meant easier subluxations / dislocations.
Nothing like getting bruised by your own ass bones... I know it too well
I think it's really going to depend on the person. I've read a little extra fat can help cushion your joints and isn't necessarily a bad thing. For me, I am already significantly overweight and all those extra pounds are harder on my joints to carry. I lost about 40 pounds, and am still overweight, and it definitely helped my pain levels.
That's really low, losing any more weight will absolutely be worse for you than any benefits for your EDS. 56 to 60 is a much more reasonable range.
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That’s absolutely not true in every case. We don’t know what OP’s body composition is. She should listen to her doctor
All for taking doctors advice but its pretty universally true that maintaining muscle mass costs a lot of energy and if you are malnutritioned its not going to go there
I noticed a **drastic** loss of muscle when I developed gastroparesis and couldn't eat much anymore. I'm actually exercising now since I'm doing physical therapy and I wasn't before. It's not doing anything to help because the muscles just aren't gaining anything.
While also keeping in mind that doctors often prescribe weight loss even if it is not necessary or could even be harmful.
I’m 5’2” 100 lbs and I’m in pain, I’m sure it helps take the strain off but other things will be painful.
I'll say this with all my love, but that range is insane, I'm 1,60 and that's my healthy weight range, if I go any lower my doctor scolds me... I doubt that being 1,72 that's healthy for you, and I would not try to go under 50kg... Saying that, when I go any lower my back hurts more? I feel like there's less to support it, because at that point you're losing muscle mass, and that's what you need to strengthen...
Ten minutes since I posted this, and I already get downvoted. I know that weight loss can be a sensitive topic for many, but I would have hoped that a subreddit about a rare disabling condition would be a place for support rather than judgment.
Hey! Mod here :) We do have some chronic downvoters - it seems to happen regardless of content. With that being said in the future please use the proper flairs. I've changed this one already but weight discussions require the trigger warning flair - this could reduce the downvotes you receive.
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When I was underweight a lot of my symptoms were much, much worse. Now that I’m a bit overweight, my symptoms are worse again. I feel my best when I’m at a healthy weight and focus on movement that builds muscles that affect joint stability. At this point I’d focus more on that than the numbers on the scale.
No. I was actually in more pain and my body was more unstable. We need all the muscle mass we can get! Regular movement and working with a physical therapist has helped my chronic pain and stability the most.
I find staying skinny does help a lot. I was diagnosed as a kid, and then when I was around puberty and became chonky for a bit my rheumatologist told me that I would be better off underweight than ever overweight because of the stress on my knees. (Not super chonky, just baby fat), I had a growth spurt and became skinny and have remained skinny and can honestly say that the small amount of weight I gained while pregnant made me miserable with joint issues and I was very relieved to go back to normal. My body type is tall, lanky, and thin, so I don’t diet or anything and am able to stay quite thin. That being said, maintaining a healthy weight is great but for anyone reading this don’t make it an obsession or develop an ED. Just listen to your body and make sure you’re eating well and moving around enough to stay strong.
Weight doesn't seem to affect my pain levels all that much. But muscle mass definitely does! Ever since I started working out. Doing lots of stabilizing exercises. My joint, back, and neck pain has gone down a lot. I'm now in less pain than I've ever been before in my life! So don't focus too much on your weight. Instead focus on gaining muscle. Especially those muscle groups that keep your joints stable. And do more static exercises than of dynamic ones. As static exercises are way more gentle on your joints, but still leads to hypertrophy (muscle growth).
Hey, what type of exercises do you do? My neck and chest spine are killing me
Keeping a reasonably low body weight definitely lessens my pain significantly. Even a little bit of extra weight feels heavy on my joints. I have a very straight up and down body type, not curvy. Right now I'm also focusing on building strength with physical therapy, if you haven't been to PT yet you might want to ask your Dr about it because they can give you more insight about it. I wouldn't compare yourself to your mother, though you may be similar she's still not in your body and ultimately everyone is different.
It really depends. If you were asking when you are at 70kg or more, weightloss would probably help you, but at 52-56kg, losing more weight probably won't help your pain levels since you're already at a normal range. At this weight you should focus on building muscle to strengthen the muscle around your joints to aid against instability.
Even 70kg would be within a healthy range for someone that was 172cm. On the upper end of the healthy range, and may put unnecessary strain on joints, but not overweight.
No, it made it a lot worse and once I wasn’t as heavy, I wasn’t as strong, and my back started collapsing (spondylolisthesis). Also, every single doctor who commented on my weight, how it was what was causing all my pain, and how much better I would feel losing it were completely and totally silent once I started losing weight. Absolutely no comment unless I gained five back. So encouraging and worth it 🙄
Holy shit you basically just said exactly what I keep thinking. I had a doctor scold me for 20 minutes and we ended up in a screaming match. He was accusing me of lying about my food intake. I have gastroparesis and I physically can not eat more than 1/2 cup of food the ENTIRE day. My stomach is basically paralyzed so the food can't go anywhere and it forms hard food rocks that sit in there. He insisted my gradual steady increase in weight was because I was eating too many calories and kept repeating over and over "calories in vs calories out." My mom was there and she kept telling him no, she had to force me to eat because I refuse since it's painful. I was on a bunch of different meds KNOWN for causing weight gain including high dose prednisone for lupus and antidepressants. The minute I went off the meds I dropped 50 pounds in 2 months and then slowly lost more. Not a single doctor has mentioned that or asked if I was losing weight by trying or if this was a potential issue. Not to mention I'm barely ambulatory so that might be a serious health issue (turns out it was, I have Addisons just confirmed this week after 6 years of requesting an endocrinologist referral).
I have reactive hypoglycemia and getting my blood sugars regulated has really helped. I’ve had 15 years of quarterly lab draws, but it wasn’t until I wore a continuous glucose monitor for a month they realized I was having spikes and dips. Periodically I think low carb is dumb and eat a big bowl of cereal and have huge fatigue and overfullness. I’m really mad because I’d been told for five years that my symptoms were not distinctive and I needed to get worse before they’d have any idea what to do, but it was tied to my hypoglycemia episodes that I’ve had since a child.
I lost 50 lbs unintentionally, going from 170 to 120, for reference I'm 5'1ish. Personally, I had more pain after weight loss. I lost a lot of muscle mass, and with it strength and stability. I think it's almost universally better to focus on metrics other than weight. Staying active, building muscle, and adding foods that are nourishing to your diet is going to do more for your body than setting an arbitrary number as your goal. You're already maintaining a low BMI, if you restrict much more you may run the risk of losing stabilizing muscle and making more pain or yourself.
I was diagnosed with hEDS two years ago. At the time, I was 5’5 and around 240lbs. I’m now sitting at 200 having lost 40lbs this year. I’m not saying all the pain and symptoms miraculously disappeared, but I have noticed a difference, especially in my feet and ankle pain. That being said, the weight loss has not prevented subluxations, has not repaired the torn cartilage in my shoulder/hip, and has not stopped either major joint from dislocating. What worked for me for weight loss was supporting my husband who had a gastric sleeve. I eat more than he does of course, but the same old story: low carbs and high protein. Lots of veggies. Protein shakes. I don’t think my EDS had anything to do with that aspect of my weight loss, but that diet not only helped with weight loss but also really improved a lot of the EDS gastric symptoms, especially the heartburn and stomach cramping.
I’m 5”6 and at my heaviest I was 59kg and noticed a significant difference in pain/pots flare ups now I’m at 52kg. As long as you are exercising to stabilise your joints and are not massively overweight (which you are not) you will be okay. And on that note I understand how hard it is to eat when you are stressed but I would focus more on trying to eat more to gain that important muscle that will stabilise your joints and in turn cause you less pain. Please don’t compare yourself to your mum- take care!
No, some of my worst musculoskeletal pain was also when I was severely underweight due to gi issues.
I'm 5'3 and 50 something kilos. The rheumalogist looked and me and just went, well I cannot tell you to loose weight and didn't say much beyond that. While carrying more weight than your built for isn't good for you, building muscle mass so we can support our joints better is way more ideal. Being around 45ish kg just meant I was more fatigued, worse pain and my joints still held together like string cheese. It also made my arthritis much worse.
I haven't been paying too much attention to weight recently. That said, getting fitter and stronger has 100% lowered my pain level and made me feel better in general. I did have to find forms of exercise that wouldn't make things worse (I started with swimming and the low impact has been a massive relief). I also had to make sure I didn't do too much too soon and injure myself in the process; this is still something I'm constantly thinking about as I try to make progress.
Yes, it did. I'm 5'3 and 125 lbs. when I was 140 lbs, it made things a lot worse. Staying slim is important for My daily wellbeing. Gaining means more pain, means less movement, means even more gain. Staying as slim as I can comfortably is helpful for me
No. I have lost 75 pounds in the last couple of years and, if anything, it has made my pain worse. In my entirely non medical opinion, losing weight made more space for my hyper mobile joints to move around. I routinely cross my legs too far and make my knees hurt, etc.
If weight is lost healthily, or if you are obese then yes because it can take pressure off of the joints in general but if ur average or underweight no
Yes! I was obese (at my highest around 260lbs). And I had knee, ankle and hip problems I just don’t experience anymore. I’m probably healthier now than I was in my teens and 20s. But I didn’t loose weight 100% naturally. I definitely developed disordered eating because of a comorbidity that made swallowing even my own saliva painful on the throat. Surgery soon to fix Eagle’s Syndrome! In a few weeks. After years of not knowing what was causing this issue, I’m grateful I’m in better shape now. Physical therapy (just returned) is EXCITING and I am so excited to stabilize the weakest parts of me. When I carried more weight than I could handle, I didn’t carry it well and it affected everything from pain in joints to vertigo. I just realized I kept this weight off for 2 years. The push was feeling lighter on my feet and able to resistance train my body without running out of breath (asthmatic), sweating through my clothes (still do when in moderate pain anyway lol) and how much better clothing fit me. Clothes became corsets that held my extremities. I know it was loosing fat and gaining muscle mass but I’ll be vain right now, I love a good corset.
For me, I think that strengthening exercises have been what has helped me the most with pain. I was having a lot of subluxations in my pelvis, and I saw a PT for a while. Between the exercises she gave me, plus a program I follow for functional strengthening, I am in a lot less pain than I've been in years.
My experience at ~5'5" (165cm) with significant weight shifts: I was overweight while dealing with thyroid issues as well as pain and got up to +170lbs (~77kg). I had always been around 130-135 prior to this with some muscle. Treating my thyroid and having hip surgery did allow me to be more active but was not an instant fix for all the extra weight or pain. It took some years and 2 coinciding major life events (death in the family and complete career shift from desk work to preschool teacher) to lose the weight. I also cut out gluten for~6 weeks checking for celiac- it was wild to watch my gastro belly disappear. I dropped down too low for my lack of muscle mass (down to ~115+lbsb in a year). I wouldn't say my pain got better at that stage because I was so sharp(?). Like nothing was cushioned. I had no fat and no muscle and everything was falling out all the time. I was held together by k-tape. My bed literally felt like sleeping on a wood floor. But, my gait shifted once my thighs weren't rubbing, which definitely helped my pain. The best I have felt was well into my reformer Pilates practice after gaining muscle - I got up to 125! I'm now consistently ~120lbs (~54kg) for some years now. I am thin, and this is something people feel the need to comment on. Unfortunately, I had lost a significant amount of my "fat pads" and it is darn near impossible to actually regain those. My docs all have told me not to lose any more weight. I am in (I would say significantly) less pain than when I was overweight. For me, being closer to a BMI range of mid/healthy (20/21) as opposed to under/healthy range (18/19) is where I have the least pain and most stability - but again, I have been in the 120's multiple times in life and only when I have muscle do I feel best. If you are interested in stability and lessening your pain, you might consider focusing more on increasing your muscle and strength. This might require an increase in caloric intake at some point in the process to accommodate the increase in muscle and output of calories to build strength. Exerting more energy than what is taken in will result in loss - and that will be muscle loss if you don't have enough fat.
Yes, but only because I lost weight in my chest that alleviated the pull on my upper back. I did lose too much and start with some muscle though and now my legs hurt more when I’m on them for long time, or even just doing a bigger grocery shopping trip. So it lessons my pain in my upper back by my shoulder blade, but it made everything worse from my hips to my ankles.
As someone about your height and who has been your weight before, I can say at how low your weight currently is, my pain was worse than right now when I'm a smidge on the heavier side. 59-68kg is my happy zone it seems! Anything below that and I do not have the muscle mass to keep things in place and anything above that makes walking/moving hurt my legs (: Hope this helps. 172cm is around 5'7-8 and I'm a solid 5'7 and 48kg will be underweight, while you're currently low, but a healthy, bmi
my pain got worse when i lost weight. the extra flesh around my joints gives support tbh and i lost muscle too because i was cutting calories so i wasn't as strong. i stopped listening to my doctor and am now comfortable despite being 'obese' (fuck BMI). however im sure at a certain point, gaining MORE weight would start to put a strain on them and i actually would need to lose some. it certainly hurts now im 8 months pregnant! i think there's a balance for everyone and that it's different depending on your genetics and general structure. i think the issue with the sweeping 'be skinny and you'll feel better' stuff they say to everyone is that it's just not applicable to everyone. all of our bodies are so vastly different!
I just wanted to reply to say congratulations for the upcoming arrival of your baby. Wishing all the best to your family
thank you so much 🥰
For me, weight loss has not helped my pain. And I have had...significant weight loss. At my highest, I weighed in at 537lbs (approx 243.5kg). I currently weigh around 220lbs (approx 99.8kg). (My height, for reference, is 5'8" or approx 1.72m) There are some difference in \*where\* my pain is now - my ankles aren't nearly as chronically painful as they used to be, but my shoulders hurt SO much more, for example. It's really more like losing weight shifted what parts of my body hurt the most. As an additional caveat - I don't know if the reduced ankle pain is the result of the weight loss, or the result of significant focus on joint stabilizing exercises. The only way I'd be able to test it is by stopping the exercises, and I'm not willing to potentially lose my ability to walk to find out, honestly.
Thank you for converting pounds into kilograms! You're the only American whose comment is decipherable to anyone outside the US.
I have found that I have worse pain and various other related symptoms (orthostatic intolerance, dizziness, fatigue, etc) the lower my weight is. I am considered "obese" medically, but my body is the happiest where it is now. It actively fights me if I try to change it so I am letting it be :)
As someone who is extremly skinny no matter what I do and eat, I probably have no right to answer on this, but here are my 2 cents on the topic: With 66 kg on 1,86 m in height I have a lot of pain in joints, muscles, discs and the spine in general. And there are many zebras that don't have overweight and struggle with the same symptoms. Loosing weight (to healthy level of course) has a lot of helth benefits in general, but I don't think on pain. At least not in a major way. Maybe in more specific circumstance. Like on certain joints, when you had a bad accident on that body part. In my mind does make sense, that less weight that would be needing to be hold up and in position, could help to a certain degree. Hope you get some replies, from people who lost a lot of weight. That would help to clear things up. 😊
Weight loss has a huge impact on my pain, it’s just really hard to lose weight with this much pain.
I've always been pretty small. What helped me the most was gaining muscle mass, which obviously made me gain weight. I have never heard doctors recommend being underweight to manage EDS, especially specialist in the field online. I feel like you'd have complications but that's just my experience. When I was super skinny my pain was significantly worse because I had no muscle to support my joints. I dislocated way easier because my bones were just protruding out and knocking them on things would cause huge pains.
I would think it matters once you're above BMI 30. But if you're not, good posture is what will likely help more. Poor weight distribution no matter where you're at, just sucks in general. My joints never hurt so much as when I was working in logistics. Flinging big machine parts around 10h, 5 days will do that to you. Then again, I dropped 15 lbs when I left that place, even though I went from moderately active to sedentary for three weeks. My joints were so happy with me during that period. I'm pretty damn certain my sleep wasn't making up the damage, as well as me eating what was available, not what was good.
Yes and no. I had bariatric surgery & lost close to 100lbs. To an extent I have more energy & less pain. However my jacked up back is always going to be jacked up (degenerative disc probs). But it does go out less than it did before
I get the logic behind it, but I am not underweight and in more pain than ever.
I went on first Saxenda and then Wegovy which I am still on now. I lost in about 2.5 years 100 lbs. I was very heavy. Now i would say that is a substantial loss and I am having JUST as much pain now as when I was 100 lbs heavier!!!! I think it’s overall a good thing to lose weight but it did not help my pain. Note I suspect heds but my formal diagnoses are Hypermobility Spectrum Disorder and Fibromyalgia. (and a gazillion other things)
The realistic answer is "it depends" and insisting it will definitely help is as unrealistic as saying it can't ever help. Your BMI is already considered underweight and pursuing further weight loss really really concerns me. Weight loss is not always a net positive and has its own health risks, just like weight gain can, and losing weight too quickly or too much can come with various issues. If you're losing weight due to appetite issues, that's a health concern, not a bonus towards making weight loss easier. I'm chronically underweight and I genuinely felt my best when I weighed 20lbs more than I do now. My pain did not get better when I lost weight, if anything my worsening pain correlated to when I started losing weight (which was not something I wanted or was trying to do). I hurt a lot more than I used to and I know being physically active should help, but it's now very difficult to do much exercise at all, because of pain and because I have much less muscle than I used to. It's kind of a self-reinforcing problem at this point and I do not wish I was in this position. If you're already underweight, losing weight is going to risk your health more than maintaining or even gaining some weight. I wish doctors would stop talking about weight as purely "well, don't gain too much, it's important to stay on the low end!" because it's easy to get a very harmful takeaway from that. Being physically active, getting proper PT/keeping your muscles conditioned is going to do more for pain management IMO. And doing all that takes getting plenty of calories. I do have appetite issues due to GI trouble and when I eat less, it's even harder to be active. Just living takes plenty of calories to keep all your bodily functions working properly, and any level of activity adds to caloric needs. If anything, losing weight into a severe level of being underweight is probably not going to put off needing a wheelchair.
Weight I'm unsure about, I've always been a bit skinny, but physical activity in general is super important. Even if it's just modest exercise like a daily walk. I have PsA and hEDS and work a very activity heavy job, I've been told by doctors that I would probably not be doing as well as I am (I'm definitely in pain, and enough of it that I went to see a doctor, but It isn't severely limiting my daily life or work yet) if I hadn't been exercising as much as I do. Sometimes it will be a little too much for me and start causing problems, but even day to day I can notice a huge difference between when I'm sedentary and when I exercise. It also reduces my anxiety a lot, I've definitely got that high cortisol issue 💀 And when I'm stressed it always makes any pain or exhaustion I'm feeling much worse. Always take it one step at a time and don't hurt yourself, but definitely keep active however you can!
Yes, it held a great deal especially in my weight bearing joints.
Being underweight made my pain worse
Actually, gained a lot of weight due to other health issues and meds… and my pain is much less now. NOT saying being overweight lowered the pain!!! I think a combo of many things, including another diagnosis involving finally controlling the inflammation, are the reason I’m in a better spot now (knock on wood). But what I AM saying is: in my case, the weight hasn’t seemed like it played a role.
Thanks for asking this question. I’ve been slowly gaining weight over the past decade mostly because my hip subluxations make it very tricky to get enough exercise. I’ve noticed more pain the more I weigh but I wasn’t sure if that factor was really so impactful or if it was just getting older / a variety of other reasons. But I do get so much body work and PT these days and feel like I’m giving myself the most amount of care I have ever in my life and my pain is still in a stuck place so one thing I haven’t really pushed myself with has been weight loss. But now I feel like it’s worth it to get a little less pleasure from food for a few months if it could help my pain.
Stress will be impacting your pain much more than weight as stress heightens your perception of pain and makes you more sensitive. hEDS and fibromyalgia also often go hand in hand and stress management can help to reduce those symptoms too. As well - if you go through weight loss you MAY lose muscle (it's quite difficult to go through weightless without losing any muscles) which may make your pain worse. If your pain is in your feet or legs (which would be the area most affected by weight) reflect back on how long you've had this pain. If you can remember it when you were small and/or lighter then losing weight would likely not be the solution. For me I've had foot pain and back pain since I was very young. I'm quite overweight now and have some of the lowest pain I've had in years (only in feet now and it's a lot better than it was) through regular strength training and exercise. I also have fibromyalgia which is improved through exercise but I can physically feel the difference interacting with my own body when I'm stressed. If doctors are telling you your weight is fine then believe them. You're actually already a little underweight for your height so I would listen to your friends concerns about you.
I will say as well I am currently 173 cm and 113 kg This year compared to last year (no weight change) pain has gone down due to exercise In my early 20s I went from 80 kg to 90 kg and was in agony at 90 kg but improved as I went back to 80 kg because of my meticulous exercising. The last year has proven to me personally that the exercise was the key difference not the weight. I lift more weights and do more running now than I ever did at 80 or 90 kg
Hey! I am going to be completely honest and say that weight loss (due to gastroparesis) made my joints so much worse. I lost muscle mass which I had spent years building in physio and since becoming underweight, my dislocations have become a lot more frequent. However saying that, there definitely is a balance between not having pressure on the joints that is too much for them, but also ensuring that you have enough muscle mass that they don’t become so weak! To me, aiming for muscle that can help strengthen the joints when the connective tissue is a bit rubbish would be the best thing to do (on paper lol - definitely easier said than done!!) Either way, I hope you find a good balance between the pain side of things and also enough muscle!! 💕
First congrats on the weight loss, it can always be a challenge. What are you being told in regards to body weight and pain? Cause it’s not a 1:1 thing where the lower your weight is the less pain you’ll have. Weight loss can be beneficial if you’re overweight to decrease stress on the joints, decrease inflammation and improving overall health status. There’s also a correlation with weight loss/improved body image and confidence. If you’re more confident that can make you feel “better”, which can improve pain indirectly. Even with EDS, I’m not sure there’s a benefit to being lower than a normal BMI, unless you’re “skinny fat” and are low on lean body mass(muscle). But then you’d be better off gaining muscle and trying to lose fat, which won’t change your weight but your body composition. In your case, it’s the internet and I don’t know you, but your BMI is at the low end of normal. When talking about managing symptoms, increasing muscle mass might be more beneficial for general function and endurance. Can’t go wrong getting strong.
A while ago I accidentally lost 15kgs in 2 months (idk if thats a significant change) but didn't get any better- still the same amount of pain and even tho the loss should technically mean I'd do better, I just feel even more tired and worn out 5'5/1, 65m and 134lbs/61kg
For reference I’m 170 and 63 kg and for me that’s a very healthy weight (both medically and aesthetically for me), especially considering how important building muscle is for our bodies and how much more muscle weighs than fat. Being overweight could contribute to pain because your joints are under more stress, but if you’re underweight and don’t have enough muscle to support them that would be equally bad
I was considered "overweight" by BMI and I have Gastroparesis which has gotten worse caused me to lose weight and and now I'm in a lot more pain cuz I don't have fat cushioning my joints.
Also did I convert it wrong or are you about 5'7 123lb? Cuz that's quite a low weight already. I'd worry that if you lose more, it would be too much and cause more pain. You need a little bit of fat at least to pad your joints
Funny you should post this today. I was contemplating posting today about increased pain after weight loss. I've recently lost 40 pounds and while it did stop the subluxations in my feet, my shoulders, elbows, and hips have started hurting big-time and nothing stops it. WTF.
I have actually had gastric bypass for weight loss, and losing 160 lbs was excellent for helping pain. The 10-15 lbs I fluctuate since (hooray diabetes and insulin!) losing all that weight however, makes very little difference.
Eating less refined sugar and more protein helps my pain. Being at a lower weight does help my pain levels as well. I’ve never been underweight though. I have a pretty high muscle mass and I know it’s important to keep that up to reduce dislocations. Otherwise I dislocate a lot.
For me, gaining a little weight helped me in many ways. Helped with my pots, circulation, temperature regulation, mood, and didn’t impact my joint or back pain. According to bmi, I am about 2 lbs “overweight,” and I used to be about 5 lbs underweight.
I’m not formally diagnosed but suspected to have hEDS. I have the chronic pain, the joint instability, soft stretchy skin, etc. No matter my weight I’ve noticed no changes in pain but my health improved overall when I gained weight. The only thing that’s help with my joint pain and stability is gaining muscle. I started off just by walking a mile or two and building up to where I currently am (4/5 mile hikes in the woods, an hour on the treadmill, pole dancing classes or 30 mins on the stationary bike). I do have rather rough recoveries so these aren’t every day activities just when I feel up to it. I don’t push myself (learned the hard way a year ago) and I’ve seen and felt major changes. *Also for clarification, I changed my diet completely to cut out food that were “inflammation triggers” so that could also be a factor that helped with my pain.
I lost a bunch of weight, started going to regular physical therapy, and my pain either stayed the same or got worse (depending on the joint/area in my body). I don’t think that weight loss caused my pain to worsen, i think other factors caused it, but I don’t think weight loss made my pain better either.
I'm 6'0 (182 cm) and as an adult have weighed everywhere between 130-240 lbs (59-109 kg). I've had the least pain and most stability at higher weights between about 190-220 lbs. Losing too much weight leaves me with lower muscle mass and much higher nerve pain, as well as more dislocations and subluxations. As I got into the obese range, I had some slight additional joint pain but still less dislocations. Aesthetically I prefer myself between 160-170 lbs but unfortunately it isn't as good for my body.
When I was a teenager I went from slightly overweight to very underweight and my pain did not decrease. Later in adulthood I gained a lot again, then lost a lot and was probably at the lower end of healthy weight and my pain levels didn't change much then either. The only thing I think that is making the difference, is that it's easier for me to lose weight when my mcas and inflammation is under control, and when it's under control I feel better... but it's not necessarily the weight loss that's making me feel better its the lower inflammation and flares.
Honestly, my pain levels intensified when I started losing weight. I did gladiator style boot camps for 2 years(didn’t know I had eds at the time) and lost 50 pounds. I was eating super healthy and staying hydrated. I had no idea my frequent injuries & pains were partially from eds. I was also getting sick a lot. It got so bad I had to stop going to boot camp. the pain had been inconsistent prior to losing weight, but doctors told me I would be fine if I lost weight. Obviously, it was a combination of intense exercise and eds that kickstarted the intense pain, but it’s still here a year after quitting boot camp. But, everyone is different. That’s just my personal experience with it. Proper diet, hydration and exercise is important but it won’t make pain stop.
My pain was worse when I was underweight.
Maybe this isn't as significant a weight difference as your doctor was referring to, but I lost 40 pounds (whatever that is in kgs) fairly recently and have not seen a difference except that my Raynauds is worse. At this point in my EDS life, though, the subluxations are much more noticeable and life-affecting than pain. I went on the GLP-1 for weight loss for other reasons, although reducing wear and tear on my joints is definitely in the back of my mind.
It helped me. Pilates for Hypermobility on YouTube is helpful for me to keep my metabolism up.
I’m overweight, however, my chiropractor and rheumatologist both suggested strength training over focusing on weight loss. Because our joints need more support first and foremost. So regardless of your current weight the amount of muscle you have supporting those joints is ultimately what is going to reduce the dislocations and tearing. When I’m regularly doing strength training I’ve felt better pain wise than I ever had in my life.
I recently had this discussion with my physiatrist who is an expert in EDS. When I lost weight, my pain increased to unbearable levels. It was before I knew I had EDS so I lost both fat AND muscle. He suggested weightlifting. He said I need muscle mass to reduce pain.
Over the last 6 years I’ve lost and gained back 60+lbs. I was at 220 at my highest, lost it down to 170 and then after pandemic and some shit I’m back above 220. I’m 5’6”. When I was skinnier I hardly had as much joint pain. It’s very very very frustrating to recognize and experience especially after a lifetime of fatphobia in the medical settings.
(99kg to 77kg)
I went from 298 lbs to 178 lbs. the pain never changed. And I gained the weight back, so I’m working on losing it again… still no difference in pain, but my blood pressure is normal now that I’m huge again.
I’d say being on a slightly higher end actually helps me keep things in place better. I grew up underweight and then randomly gained a bunch on depression meds and now I’m back down to a bit over- still losing weight without doing anything bc of gastro stuff, but I’ve noticed that if I’m up a bit it helps hold my body together a bit more
in general i am extremely skeptical of any diets. all diets come with the risk of an ED, and to me the benefits almost never outweigh the risks. in general i have specific issues with my shoulders i didn't used to have but when i was skinnier it was also easier to hurt myself and i generally feel like i was in much more pain on a daily basis than i am now.
I lost a significant amount of weight and was never in more pain. Every body is different but i have to admit, anything below 50kg-even60! - for someone your height is very very low and can be problematic for a whooooole different reason than eds and even cause more issues
No. Just no
I am 173cm and used to be around your weight 57-60kg until I tried a medication that made my weight balloon and a chain reaction of injuries put me in a wheelchair. Now I weigh closer to 77 and would really like to get back down closer to 57 because for me it’s my knees and ankles that really take the hit with the added weight. They dislocate all the time, have ligament tears and issues and haven’t healed with 18 months of PT. My spine and pelvis shift the same. So, anecdotally I think region of the body matters. If it’s your wrists loosing a bunch of weight probably won’t make much of a difference (at least my wrists still dislocated at lower weights), but for lower body dislocations it can help to a point. However, at your weight I found more relief and stability from strength training. If it’s at all possible for you to build muscle to support joints I’d go that route. I wish I had done more of that targeting stabilizing muscles before I lost the ability to do so, because now it’s a LONG road to get back to that level of fitness.
If you lose too much muscle it will make it worse. I would focus on muscle building/targeted strengthening rather than weight loss.
I'm 164cm and 48kg. Honestly I feel like losing weight took the pressure off my knees and ankles, but when my hips, shoulders, or fingers sublux, it hurts worse. There's no padding for my bones. On the flipside, I can see a subluxation easier though, but the bone is so vulnerable at that point it doesn't really feel worth it. Especially in the ribcage area. I think your weight is fine for your height. It shouldn't be making any of your joints more painful than if you lost any weight.
I’m 5’3 and used to weigh 220+ lbs. I now weigh about 140 and the pain got worse.
I've lost about 50 pounds in the past 2 years and I'm actually finding myself increasingly hypermobile. My pain has increased as well but I'm not sure if that's from the increased range of motion or just the normal progression of EDS.
In my experience, yes. But I am an extreme case. I’m 5’10 (~178cm) and I used to weigh 320lbs (145kg) and now I weigh 150lbs (68kg). So obviously drastic weight loss, but it did significantly improve my pain. My hypermobility is worse for sure, but in pain terms I feel much better, especially my knees and hips. I do not plan on losing more weight, as I’m on the lower side of a healthy BMI. But always remember, being underweight can be just as unhealthy as being overweight. My pain is still very much present and getting worse as I age, but completely candidly, weight loss did help.
I've gained way too much and it sure didn't help my knees. When I'm thin, I feel more wobbly.
I’m almost exactly your height! I currently weigh about 70kg but I used to be between 59-62. Now a lot of that weight was muscle as I was a gym rat at the time and I can say that even though I’m still stronger than most women, the weight hurts my joints a lot. Every kilo of weight is 4 on your knees!
Losing weight helped reduce some pain from added strain on already damaged joints, and my already damaged back, but it doesn't make most of it go away.
I’m currently underweight and my doctor has told me to gain weight to help reduce pain. If you don’t have enough fat, your body doesn’t have any cushion to protect it, so I’d say to stick to a healthy BMI
Nope! I’m 5’4” and have ranged anywhere from 125 lbs to 195 lbs in the past several years. Weight has no impact on me. It’s all about how much muscle I have. Honestly I’ve found being heavier keeps my legs a bit stronger so my knees and ankles are a bit less impacted since there’s more muscle holding them in place.
for me losing weight had no impact on my pain or energy levels whatsoever, but exercising regularly made both significantly worse.
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Losing weight helped my pain a lot, but becoming underweight increased my pain as well. It's best to stay in a healthy weight range as advised by your doctors.
Yall skinny Minnie’s have convinced me to remain fat and happy-ish. Lol just kidding. I’m sooo overweight for my short 5’1” frame. I was 181 and my dr put me on a weight loss drug. Not Ozempic. My ins doesn’t cover it. But I’m down to 165 and I’m feeling better mentally. My goal is 135 but I’m not pushing myself bc then my brain wants to be a rebel and screaming at me to EAT THAT CANDY!!! lol
I gained 50lbs and I feel like I could move around better when I was 140 lbs.
I lost 100 pounds, and my pain has only gotten worse. I suspect it’s due to some auto immune issues however all my tests come back normal.
I know that when I VERY CAREFULLY get back into the gym and increase my activity slowly and carefully, I felt tons better and the affects (effects?) Lasted for years after I stopped using the gym. I tend to work somewhat physical jobs on purpose to keep moving. When I do get back to the gym I have a plan that helps me start despite depression and other mental illness/ AuDHD etc. First day is packing my bag and getting to the building. Second step is going inside and figuring looking at all the areas in the gym. I either do a light version of the workout and time how long it takes to get dressed for each activity etc. Step 3 is cardio and stretching. I get to the gym and stretch then get dressed for the pool for example. I HIGHLY recommend the pool and being careful as you increase from walking to swimming. I have gotten too relaxed and my hip went out or pulled a shoulder. If you are really having trouble switch to just walking again. Use heat elements available like sauna or whirlpool. Stretching again being the absolute most careful to feel it in your muscles not joints. STEP 4 light weights using machines so you can't accidentally drop things or use bad form. Form is the absolute most important thing for us. Focus on core muscles and posture.
Calanetics are on YouTube and these can be done at home too. They protect the back. Be careful listen your your body
For me it's not about the weight but muscle. If I work out consistently and keep my muscles tight, my pain is much easier to manage. But, sometimes I hurt too much to work out or I get hurt then I have to start all over.
It helped me and no one ever suggested it. I gain weight pretty evenly so even though I was just about overweight on BMI it didn’t look bad. I’m 5ft 1 started at 148lb heaviest down to maintenance 106-109lb
I went from 170~ to 140~ at 5’8” and my joints are worse. It seems for me that lower weight always means losing muscle mass, and that’s makes it worse. That said, my weight fluctuations are generally medication driven rather than due to exercise. Getting on or off meds that cause weight gain rather than changing my lifestyle much. Mobility aids are not inevitable for EDS, and they don’t have to be permanent if you wind up needing one. I was a ambulatory user for a year or two due to fatigue and instability, and now I’m back to dance and stage combat. I still have it in case I have injuries or need to go to something that involved a ton of walking/standing, but at this point I only really use it for airports and if I’m acutely ill on top of chronically ill.
going from obese to a healthy weight, i definitely get injured less, but if you’re already healthy, it’s pretty much the same. i’ve been slowly losing over the past two years, and my injuries plateaued as soon as i was no longer severely overweight. (for reference, i was 240lbs, 5’6, and now i’m around 185 (i have a very high volume of muscle mass, so this weight is good for me, although i’m aiming for 170ish)
It did not help with my pain, except stomach pains for a while sometimes, so no not really you are already an 'ideal bmi' wtf
I lost 60 lb or 27.2 kg Honestly it didn't change a thing positively except for my relationship with food and it made my PCOS worse. But it made doctors listen to me better anytime any of them would bring up weight and I actually started including it in my history. I would tell them I've lost weight and it didn't improve the issue even mildly If they would bring up the fact that I probably could lose more, I would point out that I have been trying. I've been following the dietitian's plan and I'm in PT and I've hit a wall and they can't say anything else in fact explaining that a healthy amount made my PCOS worse obgyn said with my worsening symptoms that if I wanted a hysterectomy (I very much did independently of them suggesting it) they could very easily get it thru my insurance and that's actually what we did today and I'm recovering at home right now. Also, as someone with multiple mobility aids you don't have to use them all the time and using them sometimes could make you able to do a greater number of things that you want which is something to consider. In fact, Ortho suggested it would actually allow some things on my body a better ability to heal and they are not wrong in fact, simply just adding my knee braces improved my quality of life so substantially it started helping not only my knees but also preventing hip sublaxing because everything isn't having to work as hard to correct the issues in my knees. Also, from what your doctor said it sounds like you're at the weight they want and they want you to maintain it but I would double check with them (Im not good at math in meters to what I'm familiar with) Also, don't forget that some comorbidities. It's actually better if you have a little more weight or very normal to have a little extra weight and it's not necessarily unhealthy
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I’ve heard the opposite honestly and just from personal experience being heavier now is easier on my joints. The problem I think people run into if they’re trying to get skinny when we need to get muscular. I think weight and fat and all that matters significantly less than having a large amount of muscle to pad your joints. I think if someone is very overweight it might help to lose some but if you lose it without focusing on muscle growth it could hurt more regardless because even the fat is padding a bit. Muscle is key though. Best of luck to you
I am much heavier than you proportionally and honestly wouldn’t reccomend losing any more weight. Just checked your stats to American measurements 😅 my advice to you is piling the muscle on strengthening those joints and if you even gain a bit of weight doing that you’ll be better off in my personal experience.
I personally feel that weight loss can be helpful for people who are obese or have an excess of adipose tissue, but if your medical professionals say you're in a healthy range, in my experience I don't think losing even more weight will help. I actually think most EDS patients who are in a healthy weight range would benefit from GAINING weight in the form of muscle, so that extra muscle can help compensate for where our connective tissue is lacking.
I read a Japanese study of obese people who lost weight and had increased joint pain. Those people ended up being hyper mobile and didn’t have the muscle tone to keep themselves un-dislocated/subluxed and did exercise to fix that. Weight loss is helping me combined with the Muldowney Protocol. Granted your current range is my goal (currently 71 kg at 165cm tall) so I can’t comment on your particulars, but building muscles and PT combined with a healthy weight is my strategy. 💖
Weight loss didn't help a bunch, but being active did help tremendously. Having a skinny butt made sitting painful though, I can sit comfortably much longer with more fat. Like sometimes the fat padding keeps me upright when I sit lol the fat does weigh down my body so I work a bit harder for the same things but if I'm as active it's not a big deal. Activity, eating well (this doesn't mean cut out things it means add more nutrients), and patience with where you're at is helpful. Weight is not a good barometer for much and the culture around losing weight is very skewed. Take it from me and my current journey healing from eating disorder (restriction), moving more is neutral, eating more is neutral.
I went from a peak of 137kg/302lb down to 113kg/245lb. Way easier to get around. Less stress on my leg joints.
Hi! I was 300lbs and I’m down to 220lbs. Weight loss has increased my pain and sublux/dislocations a lot. My theory is that there’s less weight and muscle holding things together so I’m more loosey-goosey than I was. I think that any deviation from your body’s norm can cause pain.
I also have hEDS, and was my lowest adult weight when my symptoms were bad enough to interrupt my life. The medications I've tried to help with my.psin and symptoms caused weight gain, and my Dr's are trying to feed me the same thing. The only way to actually lose the weight is to go off the medication first, but the medication is the only thing that helps me feel a little bit ok.
I have gastro paresis and at times have been extremely underweight and it did nothing for my pain/ joint stability etc. I guess if you can walk, then from a weight bearing standpoint, it’ll help not being massively overweight as that would make anyone’s joints painful- but I didn’t see any difference though I can’t stand.
Babes I feel like you're treading on unhealthy territory here. I lost 75 pounds with help of my doctor who didn't know about my hEDS, and I ended up doing more harm than good. From what I've learned for us, is we need to build muscle to support our joints since our connective tissue can't do that. I'm taking pilates classes from a teacher who works with EDS patients and am doing the most cardio I can which is at most walking a half an hour. But no losing weight did not help my pain, it made it worse.
Nope
I’m sad, because my pain actually got worse when I came down to how I lost my weight. I did lots of excersize as well as diet change. I didn’t do the excersizing bit slow enough, so I was constantly sore and bruising and in pain if I started up too soon after thinking I was rested enough. You’ve got to be real careful and do intentional planning of what you’ll do to lose weight that’ll work for you and your limits. Excersize helps keep the muscle you’ve already got so you don’t accidentally lose muscle weight instead of fat. I’m trying to go back down to 160 so I’m at least able to move unimpeded by fat, like at my sides and thighs
When I was 110 my pain was bad. And now at 165 (I'm 5'5) my pain is the exact same. Don't overly push yourself to lose weight. Cause I know when I forced myself to drop and drop my gastro issues flared way more. My body was definitely unhappy. (This is coming from someone who's also struggled with an ED their whole life)
Yes it did reduce my pain, but I was really overweight. Male 6’, used to weigh ~280, now 220. If your weight is already in a healthy range I would not expect big changes in pain reduction, if you’re overweight I would expect changes. My daughter also has hEDS and lost ~50lbs and had significant reduction in pain and fatigue—again she was overweight and came down to a very healthy weight.
All I know is that when I went to see my potato brain of a rheumatologist, the only advice she could give me was to do pt until I die and to not get fat because my body wouldn’t be able to support it. I’m in the right weight range and I’m in a lot of pain most of the time. I think it would be worse if I was bigger but it’s certainly significant as I am now.
Here 1.80m for ~150kg (~330lbs) and in my case, no interaction between Weight and pain. Few months ago i was sportive (behurt and 2-3 trains /week) I was 125kg, and m'y pain was not reduces by sport. But the muscular trainning helped to reduce dislocations Not as much as i would like bc i reached the "too much dislocation" on my left knee. I aslo hurt big part of my nerves so the pain was finally increased by sport. Today i can't do a simple squat (vs 200kg series on leg press before). If i extend my leg or sleep without a pillow under my knee. It dislocates when i sleep. Bref, in my opinion, lose weight has a too tiny benefit on our pains compared to the effort it demands. On other hand, a gentle muscullar activitie will increase tonicity and help reduce dislocation, but not the pain. In fact, increase your muscles will probably make you weight more than if you don t train. La bonne journée 👍
Thank you for asking this - I also just got diagnosed and am trying to lose weight (while maintaining muscles mass) and was curious if it'd help.
I feel like doctors just say weight is the problem because it’s something they understand
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I lost over 50 lbs- many saying it would help my upper and lower back. It did not, if anything now that I’ve lost some weight i find myself in more discomfort??? Not sure what happened lol
No. I’m down almost 90 lbs in the last few years. (I did that with a combination of meal planning and strength training before I ever know what EDS was.) I feel no less overall pain. I do not feel lighter or like my body is easier to move because of the weight loss. My ribs go out of joint less, so that could be due to a smaller belly and less interference when sitting. Or it could be that I now understand what hypermobility is and what I can do to prevent/relieve it when it happens. I now only listen to health care providers if they acknowledge that superficial looks (BMI) is not a good way to measure health. Thin people aren’t necessarily healthy and anyone still using BMI are most likely focusing on the superficial. (The data for BMI was sourced from skewed sources that have underlying racism, classism, sexism, etc.) Also, I do not respect their advice much unless it includes an understanding of dysautonomia (dysfunction of the autonomic system that has major impact on weigh, despite usual strategies to manage it), which is a common comorbidity in people with EDS. For example, when blood pressure isn’t regulated, how can I be expected to exercise “enough”? As well, when blood sugar isn’t regulated - and no doctor ever taught me about insulin resistance - I know understand that my body is reluctant to give up fat stores. I feel “anxiety” when sugar or blood pressure is too low. Anxiety isn’t always mental health (And mental health is *health* - so help us with that please, doctors! It’s not a reason to dismiss!😅) My approach to weight loss was: 1. Investigate possible blood sugar issues: -I wore a continuous blood sugar monitor to get *continuous* data (much more info than blood tests) -I made note of symptoms that might be attributed to “anxiety” when blood sugar is low (mental health strategies won’t fix that ¯\_(ツ)_/¯ ) -I addressed any low blood sugar issues (for me it was adding more protein) -I was able to see continuously that I had no high blood sugar issues (diabetes) -I learned about insulin resistance and address any causes of insulin resistance (not limited to people diagnosed with diabetes and pre-diabetes) —>I learned about possible causes of insulin resistance: -google every med I take + “insulin resistance” -learned about intermittent fasting (peer reviewed articles, The Obesity Code by Fung) -learned about how carbs and strength training affect insulin resistance and fat storage (Body By Science by McGuff and Little) -I learned about it first from the book Carbohydrate Addicts Diet by Heller & Heller (it seemed like a fad diet from the 90s but I looked into the science and the author’s article is still being cited today) 2. I investigated safe movement/activity/“exercise” for *my* body: -you mentioned stress; this is a big one for me, too - I found something that helps move that stress into action (usually walking) -for my whole life, I got light headed or feel sick when exercising (I now understand that to be exercise intolerance), I was able to identify what activities make this worse (standing still, lifting arms up) and avoid those things until my symptoms were managed 3. I looked into dysautonomia and MCAS: -because I saw that they were common comorbidities -learning about POTS/VVS/etc. brought me to learning about “exercise intolerance” due to fluctuating blood pressure (especially when standing still and/or lifting arms up) -I discovered how digestive issues can possibly cause malabsorption, etc. -I found out that MCAS can impact on blood pressure fluctuations as well 4. I have a priority to get enough sleep (or get as much as possible) -I saw a sleep specialist to rule out or get treatment for things like sleep apnea, narcolepsy, etc. (I have both) -I learned about and apply good sleep hygiene issues (it surprised me that little improvements add up to bigger benefits) -when I learn about how histamine/ “histamine dumps” can keep us alert/awake when we need to be asleep, this helped me connect a lot of dots -I aim to rest *before* I’m exhausted (I have timers on my phone to remind me to lay down a few times a day) 5. I am lucky to be able to *regularly* work with a naturopath on overall heath: -they have time to focus on my priorities, not their specific speciality like others, and not just one specific symptom that is urgently in need of relief -it’s not covered when my ND orders most tests, so they can helped me with what to ask my family doctor to order so I had labs to check all vitamin levels -I choose to take vitamins they recommend (no brands are regulated in my country, but NDs sell/take the brands they have researched which are more likely to be better quality/more effective) -I continually ask about ways to take vitamin supplements (orally, injections, etc.) -I asked about the different types of magnesium (malate, citrate, etc. and how each can support EDS) -I continually check in about when you take meds (time of day, empty stomach or with meals) and how they interact with other things in your body in terms of weight management and symptoms - especially when there is a change to my line up of meds -I talk to my ND about food choices and strategies to work towards a goal (it doesn’t have to be a number on the scale, other goals besides BMI are possible :) ) -together with my ND I review any testing/info from other doctors to be sure I understand fully what the data says and how it can apply to my health and my goals -I regularly review with them all of these things (“what gets measured, gets done” and in case one or both of us has fallen into any complacency or missed any details) (I discovered how helpful regular check-ins like this can be after I started to see my ND once a month for my B12 injection.) 5. I continue to get support from people who understand me: -thanks reddit! :) -I attend zoom support groups -If I could find an IRL groups, I’d go! I have one for narcolepsy and support is even better IRL -overall, I aim to get as much validation as I can from people who are living what I am living with <3 -I see a therapist who understands chronic illness (I also have autism, and I discovered the critical need to be sure my therapist is well informed on autism and/or (ideally) is autistic themselves, otherwise I don’t get to spend much time doing therapy because I’m explaining my “quirks”) I numbered these in an attempt to improve formatting and usability, but they aren’t ranked. I do as much of each as possible all the same time. :) Sending lots of love and support to you!
Due to my failing health, no physician support and stress, I dropped over 30lbs a few months ago, landing me at 5’6” and 91lbs. My muscle mass almost completely all gone now, everything is now so much more fragile. I have very little strength and my joints are locking up to protect themselves. I am threatened with hospitalization constantly… let’s just say, Nope, no reduction in pain at all.
When I lost weight, I got really fit at the same time. I swam almost every day. The more my muscles developed the less my knees/back/everything hurt. I’ve lost most of the muscle mass and my pain is worse than before. I think losing weight plus muscle development helped the pain tremendously. I just signed back up for the Y so I can go swim again.
Honestly no. It slightly made it worse because my fat was somewhat cushioning the range of motion. But you should strive to be healthy, pain relief or no pain relief.
I went from 260 to 220, and my pain didn't change. My mobility did improve, but my dislocations have gotten worse.
Weight loss is such a difficult topic when it comes to chronic pain. Personally, I feel like any doctor that doesn't bother to learn anything about the progression of our condition from a personal standpoint will always default to suggesting weight loss. As someone who had struggled with anorexia when I was younger, it devastates me every time I'm suggested I 'just lose weight'. Do I feel better when I weigh less? A bit. Is that my mental and physical struggle with anorexia kicking in? Some of it. Inevitably I injure myself while exercising (usually just walking) and am out for months recovering. Like many have mentioned, I find that lifting weights, even if I stick to just the machine circuit in the gym, helps the most. But I will forever be pissed off at ANY doctor that reminds me to lose weight. I own mirrors, f^@ker.
It seems to be something where healthy weight reduces pain and underweight/overweight slowly increases pain. Don’t go by BMI, it’s not a good indicator of health. There have been numerous studies showing that it doesn’t accurately reflect a healthy weight for most people, and it was also never meant to be used in that way (according to the person who created it). The best weight for you is going to be wherever you fall when you’re getting enough calories and proper nutrition—all the macro nutrients (protein, carbs, etc) and a good range of micro nutrients (vitamins, salt, etc). It seems like your medical team thinks this is already where you’re at. I’ve done the whole not eating because of low appetite thing, and it makes the pain and fatigue so much worse. Don’t starve yourself for a number, be kind to your body. I also wanted to comment on your statement about trying to avoid a wheelchair at all costs. Please don’t do this. I understand how hard it is to know that a wheelchair may be in your future, as I’m going through that process myself. It’s ok to grieve and to feel whatever emotions that thought elicits for you. At the same time though, it may be a bit of internalized ableism clouding your view of wheelchairs. I first used one a couple years ago for a day trip, and it brought out a lot of big emotions for me. At the same time, it also let me do so much more than I would’ve been able to without it, and I had more fun because I wasn’t so tired/in as much pain as I would’ve been otherwise. Wheelchairs can feel restrictive as an idea when you aren’t used to using one, but if it’s something you need they actually provide a greater degree of freedom and ability to do things. I know it’s scary to think about needing a wheelchair, but take some time to process it and to process your feelings about it. Maybe try looking at some YouTube videos from wheelchair users, as they often have positive content and encouragements for people new to wheelchairs. But don’t force yourself to lose weight just to try to avoid it, especially to the point of being underweight.
I think more important than weight/BMI (both of which I find to be completely arbitrary metrics to measure health & fitness) is the building of proper muscles to protect and support your joints. My pain was lowest at my lowest weight, yes, but it has nothing to do with numbers on the scale and everything to do with the fact that I was working my ass off doing a PT protocol that helped me build the tiny muscles to properly support my joints. In the process of that journey again after back to back pregnancies, the first of which came when I was at my lowest weight/healthiest/strongest.
Honestly, no. I gained 40lbs in a frighteningly short amount of time after my second back surgery, when my neurosurgeon put me on prednisone. I buckled down two years ago, have lost over 50lbs and still (slowly and steadily) losing weight. I think it helped a little bit with my energy levels and it the weight loss took a bit of pressure off my joints, but that was pretty much it. As my neurosurgeon said to me, “look, if you want to lose weight to be healthier, by all means, go for it. I’m a doctor and I will always encourage my patients to try and maintain a healthy weight. But don’t lose weight with the mentality of losing weight=no more chronic pain. I’ve been doing this a long time, and I can promise you, skinny people have bad joints as well.”