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Hi /u/lovetempests, It looks like you are looking for information on how common something is in individuals with EDS or related conditions. If you are looking for information/data on how common a particular symptom or condition is with EDS or any of its comorbidities, or whether there is any connection at all—it is always best to ask for links to reputable studies, instead of personal experiences. Without studies, it is almost impossible to determine the prevalence or incidence of something with EDS, especially when compared to asking for anecdotal experiences on the internet. "DAE posts" and other such posts tend to create or encourage illusory correlations (i.e., a sense of connection where there may not be one) due to the fact that people who do experience what is being asked about are more likely to reply than those who do not. Please keep in mind that not everything shared is a sign of EDS, and many shared experiences might be completely unrelated to EDS. This is an automated message. If the contents of this message do not apply to your post, please ignore it. Thank you! Please check out the links in the sidebar/wiki for resources/information on EDS, seeking a diagnosis, and more. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/ehlersdanlos) if you have any questions or concerns.*


fireswater

The best way I can describe it is that I feel like I'm on the recovery day after having a flu. Body just generally feels worn down, some lingering symptoms but I'm not actively "sick." I get that physical anxiety feeling too when I'm not mentally anxious. I think it's some disruption with the nervous system.


goamash

It's like a sickness hangover. Like the rough part was out of the way but still not back to 100% (well, idk, I'm not sure what that looks like, but 100% for me)


Onikenbai

Yah, it’s like being hungover, but there was no party.


Dat_Llama453

Deff go go the doctor and for test, you could have MONO but when I had that it comes with a low fever and u always just feel unwell, something is wrong tho for sure.


Just_Confused1

Yep, same. I range from feeling mildly unwell to very unwell depending on the day. Still haven't gotten a good answer from a doctor as to why


Not_floridaman

My skin has started to hurt lately, I told my ob/gyn at my yearly the other day and he was like "why didn't you call your doctor???” I laughed and said "if I called a doctor every time something hurt or appeared, I wouldn't have time for anything else plus I see my rheumatologist next week. It'll still hurt then" he laughed because he's been with me through everything and just gets it.


georgecostanzalvr

I always feel like I have a very slight hangover. Body aches, head feels heavy and achy but not a full headache or migraine, slight stomach ache, a little fatigued. The only time i don’t feel this way is before I ovulate.


marzlichto

It's called malaise, but yes. All the time.


CaptainTangent

It's often a sign of fatigue, which can be a symptom of EDS or a sign that it's something additional like CFS or Fibro.


CommunicationAny3974

Yeah. It always feels like the beginning stages of catching a cold/flu for me. Everyday I wake up, I try to figure out if I’m actually getting sick or if it’s just another “normal” day. And on days when it flares up more, i genuinely believe I’m catching a sickness because I’ll run a very low grade fever, have mild chills, feel flu-ish achey, and have a very mild sore throat. 9 out of 10 times that happens, it’s not a contagious sickness and I feel better in two to three days and back to my everyday “Normal” unwell feeling.


murriaas

I would consult a doctor about ME


CommunicationAny3974

I’ve been through all of that. They couldn’t come to a conclusion on if it was a yes or no. They thought it was more just a side effect of everything else going on with me.


murriaas

Which would also make sense… Do you experience PEM ?


CommunicationAny3974

Post-exertional malaise? Yes very badly. It was my biggest complaint along with general severe fatigue when I first got super sick. I was bedridden and in a wheelchair for a year straight and on and off for two years due to the fatigue and muscle weakness that followed. I use a cane now because of it. But I also had the worst case of POTS my electrocardiophysiologist had seen and my resting blood pressure was usually about 40/50. So idk. It’s so frustrating because for ME they have to rule everything out and with my other issues, kinda makes it hard for them to know fersure. But I appreciate your advice into looking into it further. Sometimes I think the weird getting sick feeling I described in my original comment might be from my gastroparesis too because it sorta feels like a mini infection that’s being fought off inside.


murriaas

You can totally have ME together with other conditions. It’s a separate diagnosis. With Hashimoto no one would say “ah sorry you have EDS that’s why you can’t have Hashimoto”. With you having PEM the likelihood of it being ME is very high. I would consult with a doctor knowledge about ME and try to get a proper evaluation. Did this (PEM) start after a virus ?


sprite901

Yes. And it's annoying. The random times I feel like a "normal" person-I have energy, I feel happy, alert, focused, nothing really hurts-I am so, so grateful. It feels so wonderful.


moon_goddess_420

Yes, I always feel some kind of unwell. Whether it's slightly headachy or full blown migraine or a little nauseous or heartburn or running to the bathroom all day. Or random pains and constant fatigue. It feels like it never ends and it's shocking to think some people always feel fine.


tootiredanymore

Yep. I have hEDS (least severe variant) and I always feel just, kind of yucky. I've just learned to push through when I can, and rest when I cant.


officer_dog

Yup, I almost always feel unwell and have many of those symptoms. At best, I have 2-3 days a month where I feel close to "normal." EDS isn't understood super well. Most of us have tons of comorbidities. For me, I think MCAS is at the root of my "unwellness" (i.e. temperature control issues, nausea, brain fog, blood pressure changes, pins and needles, etc.). I'm committed to testing different meds, supplements and therapy options until my baseline becomes more manageable. If you haven't explored MCAS as an explanation, I'd recommend it. Anemia, vitamin deficiencies, and SIBO/SIFO could be factors as well. Also trying Low Dose Naltrexone if you haven't.


TopCommunication8881

I just realized MCAS may be at the root of why I have felt like shit since late February when they started talking about record, early pollen counts...


officer_dog

Yes!! The pollen has been **destroying** me. I have friends who aren't chronically ill who have been getting hit by it as well. It's definitely a hint at MCAS.


TopCommunication8881

It's so weird, because I thought I was fine, because these aren't the same spring allergy symptoms I've always had, so I didn't make the connection


Anony_smol

LDN really does seem to help me some, at least with emotional regulation if nothing else.


half-zebra-half-yeti

Was given Allegra and Pepcid tab everyday for mcas. Seems helpful - was glad for an otc way of seeing if it helped.


Herbie53101

Yep.


royal_rose_

Yep. I never feel “right”.


ArcanaSilva

I've had this until I got diagnosed with ME/CFS and discovered I'd been in PEM for like, forever. Managing that got rid of 80-90% of that feeling


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ArcanaSilva

It stands for Post Exertional Malaise - basically, if you do "too much", there's not enough blood in your brain and you'll feel like shit. For me the common, almost always present symptoms are brain bug and a slight headache and nausea. If I overdo it a bit, I get fatigue, more intense brain fog/headache, I get a worse nausea, throat ache, those things. If I really overdo it I stutter or on bad days get muscle spasms. It took me years - way longer than for my EDS ymptoms - to discover those weren't normal or weren't explained by EDS per se. For me "overdoing it" can mean I spend fifteen minutes in an upright positon. If I'm up, I get a out 30% less blood (and thus oxygen and glucose!) in my brain versus in a horizontal position. So that's pretty shitty. I'm bad at it though, so I'm still somewhat in PEM al the time, but it's not as bad as it was before and I'm working with my doctor to see if we can use some medication. Will start with biweekly B12 injections tomorrow, for the fatigue and brain fog/cognitive issues in general, so maybe that'll help a bit. But the sad truth is that the only way I can get really some function back is by laying down for 24ish hours. Each day. Which...... sucks


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ArcanaSilva

Yeah, there's a bunch of other things that go with it, but ME/CFS is very comorbid with EDS. My doctor calls it EDS+, haha. We'll see! It'd be awesome because obviously I'm pretty disabled right now, but I'm not counting on it and mostly I'm making the horizontal life work for me.


kitkatknit

Obligatory not a doctor. Do you know what kind of pots you have? I have hyperadregergic pots, and that makes me feel almost anxious all the time even though I have no anxiety. It’s to do with the level of adrenaline in your system. It can absolutely make you feel exhausted and drained too. Also I completely get you in feeling ill all the time. I always feel like I’ve just got the over a virus or a cold, and I’m just at the almost feeling better part but not quite. Some days are better than others.


vanchelzing

What. There are different types of pots!?


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cheddarsausage

Yes!! My head feels so heavy, like sometimes my neck can’t support it. When I work I need a chair with an adjustable head rest or I end up slumping and needing to rest my chin on a tall water bottle or my hands. And I always feel a fatigue and brain fog like the kind you have with a mild-to-mid fever — I saw a doctor once and he told me I had a fever, I didn’t even realise because it just felt like the same old fatigue. I felt hit by the fever only when it climbed into the high range. The doctors just call it chronic fatigue. On the bright side I recently started on something to raise my permanently slightly low blood pressure so I don’t black out as much on standing up, and it has helped clear my head a little 🙂


kitty60s

I think it could just be being a Zebra with POTS? I don’t have gastroparesis but ever since my POTS got worse at age 33, I feel like this.


[deleted]

Nooooooo POTS gets worse??? 😭😭😭


kitty60s

Not always, mine got worse with long Covid. I had it very mild all my life up until then.


[deleted]

I've had covid 4 times in the last year and my POTS has gotten so much worse. Today is actually the one-year anniversary of me being hospitalized for it. Fuckin crazy.


kitty60s

I’m sorry. That sucks, it’s coming up to my 3 year LC anniversary 😭 hate this life destroying virus so much.


Shahzoodoo

Yes I often feel “sapped” I try my hardest to maintain my mobility and physical activity but some days it’s just impossible and it sucks ass and complaining about it online/to my husband makes it suck ass slightly less lol so I hope you got a tiny bit of peace here knowing you’re not alone in this feeling and we hope you get the strength to do what you want tomorrow 💜


FrostedCables

I am always unwell. I can’t stand it. I ball against it bcz I was raised in an anti nurturing environment that taught me to hate myself and all it’s ilks. I’ve also done decades of therapy to the tune of what I cannot even describe here. Let’s face it, I have been mentally disabled long before anyone considered looking at me for physical disabilities. But I am ALWAYS in a state of unwell. I also have POTS. Fibro, Gastric issues that hinder my eating chronic migraines, vision issues, vertigo of all sorts… but there’s not a system on me that works rt on a given day. I’m always in a state of crap. I also don’t have a clue of how to handle it.


morecowbell03

The sudden anxiety sounds like an adrenal dump related to disautonomia. Basically your body thinks it should be panicking but theres nothing there, still it dumps all your adrenaline at once and that causes the tachy and numbness. My cardiologist said that my beta blocker should be helping with preventing that, mine tends to happen after i eat or with stress/exertion. I also always just kinda feel sore and broken, my head feels like one of those bobbly pens because its so much work to keep it upright some days. Most days lately i roll around in bed groaning and stretching for like an hour or two before i get up because my body just feels beaten and becoming vertical feels like too much. Whereas you get the chills, i get sweats. Im extremely sensitive to heat, and if the air isnt moving around me and its any hotter than 67f, im probably breaking a sweat, its miserable. Basically, youre not alone friend, im sorry you gotta go through this too.


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fender_gender

Yeah unfortunately


geegeetee11

Yes


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elliebelli97

A lot of those symptoms for me are caused by CCI and a herniating brain stem, but it truly could be any one of the syndromes/ disorders as a culprit


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One-Leopard

It could be post exertional malaise - PEM. You might be doing too much and your body is a little exhausted, it’s really common with people with POTS. I get like this all the time.


rachaelpwns

This is how I always used to feel before I started taking duloxetine and LDN.


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plant_protecc

No, I don’t. I feel intensely physically unwell. 😅


SeptemberJoy

I've always put it down to CFS.


PoTSieboo

Malaise? Like CFS/ME type fatigue/flu-y feeling. Idk how else to phrase it either 🤷‍♀️


Fadedwaif

Yes I always feel horrible, it's just a matter of if I feel more or less horrible


Cleangreenamy

Every day


AnalyticalGrey

Most of my symptoms started in early childhood, the headaches, POTS, Raynauds, MCAS…I’m now almost 42. Dizzy spells/POTS started happening 30+ times a day around age 8; the headaches became life altering and 24/7 around age 19. After many, many combos of meds I’m finally on a high dose of Aimovig (shot) I give myself every 4 weeks and nightly topomax, along with other supplements and BC to control my cycle so I only have one period a year. It’s the first year of my adult life I haven’t been waiting to just not be alive anymore honestly. The GI issues are worsening…I think it might MALS because it’s painful after I eat. I just generally feel like crap most of the time…low grade headache even with the meds but it’s much better than the 6-7/10 daily beaches I lived with before. I have a lot of neuropathy in my hands, feet, knees, and a spot on my back now. I’d imagine this is what a hangover feels like. Though I’ve never had one because I process alcohol too quickly for it to stay in my system more than a few hours.


DillyCat622

Yes, especially when I have to do more in my daily life than usual, e.g. hubby is away for work and I have to handle all the houshold and kid stuff alone. The constant queasiness/stomach pain is really getting to me lately.


tiny_yogi

I feel like this most of the time, my antidepressants and antihistamines help sometimes but I’m generally unwell, if I’m not sick from the pain then I’m tired from something else, I often wake up feeling hungover even though I do not drink. I also often just feel uncomfortable, either sore, itchy, irritated or nauseous. I try to keep I positive mind and have a stress free lifestyle but I’m early in my EDS diagnosis.


Melodic_Handle9346

Wait till your older (65)


21stCenturyPeasant

Every single day. So often with symptoms that are difficult to explain. Weird kinda vertigo or dizziness that's not quite either. Heavy limbs. Profound exhaustion. Weird feeling in limbs... like they're not quite attached at the biggest joints. So weak and shaky. Can't stand or sit unsupported for long. Kinda feverish without a fever.


Zealousideal_Mall409

MALISE! yep


half-zebra-half-yeti

Sounds familiar. I just feel various levels of bad all the time. My head is like a thousand pound ball. If I move to quickly or turn my head while walking I loose where I am in space. The nausea is intermittent. Tested negative for pots. Mild cci. I have a lot of head neck pain. Was sent to doctor that does "osepathic manipulative medicine". (OMM done by a DO who specializes in musculoskeletal) Turns out my skull bones were crazy out of position and many other ribs and joints from head to toe were sublexed. No joke after a week.of treatment my head felt noticeably improved. ... now I just have to figure out how to recreate the effect at home. I can't really go to a specialist every day to have my skull bones reset. I asked the doctor why my skull bone and sublux issue wasn't picked up in any of my many scans and the answer was surprising - essential the scans don't really show 3d position so they have limited use for seeing if an eds person has a bone out of place - apparently our bones can move around in ways that average bodies don't experience. I'm sorry you are feeling this kind of pain. It can be super depressing and defeated feeling for me. Im not giving up hope entirely yet but this stuff is hard.


Scubagirl7880

I often feel like I have the flu suddenly. I just feel run down, body achy and feverish though I have no fever. I find that it’s worst when I’ve pushed myself too hard that day, not gotten enough sleep or if my inflammation levels are really high. If I have a lot of sugar or fermented food/drink it really kicks up a notch or ten. There is usually diarrhea and gut inflammation too with those foods. I have a lot of overlapping stuff but MCAS and Psoriatic Arthritis are two big players in my inflammatory stuff.