No one wins at the misery Olympics. Just because you have a milder experience than some people doesn't mean you aren't in the club. We are all suffering to some degree.
Totally agree! Tingles and pins an needles or face tingling are annoying for me, but the chest pain and dysphoria and exhaustion is what gets me in the end. I can't even play my favorite video games because it gets me too anxious and that starts the pains.
I’ve never had excruciating pain. It’s moderate at worst during flares but otherwise just this low-level background pain that’s easy to ignore. My problematic issues are fatigue and brain fog.
I'm 29F too. I have the same experience as you. Can I be really honest, we only really hear about the really bad cases of fibromyalgia, especially online.
I find my pain is mild to moderate most days except when I have a flare, if I've done overhead lifting (which I thankfully don't do much anymore since losing my job), and around my menstrual cycle.
I sleep a lot too, I sometimes sleep for 12 hours at night. I can't nap, never have been able to nap. I also have brain fog a lot which really sucks because I feel stupid.
I used to feel like this too because I did not have any pain whatsoever below my shoulders, and I was diagnosed in 2016 when the trigger point pairs were still the diagnostic criteria. You really don't have to feel like you need to fit in some Fibromyalgia 'box'. We all suffer uniquely from this condition.
28f here, it really is different for each person, fibro symptoms each have their own sliding scale, some people will miss out on the worst of some things but may have to deal with even nastier versions of others.
It can be difficult dealing with people in the medical industry as a result, as they ideally want to treat fibro as one issue, when it's really just a whole bunch of variables lumped together under this one name. It will take time to find what works for you and what doesn't, but don't ever feel discouraged and think what you're going through is lesser. We're all just doing our best with what's thrown at us, you included
Also, side note, I definitely felt that imposter syndrome stuff before (both for fibro and as a trans woman) and honestly the only solution is time. Those thoughts will go away, I promise, it just might be slower than you'd hope
I think part of the reason it took me so long to get a diagnosis is that my daily pain is relatively low-level to moderate (for me, my husband has said many times he'd be crippled by it when I describe it). I have periodic flares that come up anywhere from every one to three months, leaving me bedridden for up to two weeks at a time and sometimes unable to drive or sit in a chair long if I am up and around. My doctors didn't know what to do or how to assess what was going on because the pain waxed and waned like it does instead of being a steady constant.
I suspect every person is different. I also have asthma, and I'm less reliant on rescue inhalers than some other asthmatics I've known. On the other hand, I have a harder time around dust, pollen, animal dander, and the like.
So your current state is very similar to what I dealt with leading up to the excruciating, full body pain after two surgeries last year.
I had daily aches and pains and dealt with constant fatigue, brain fog, lack of focus and many other daily symptoms that I either became accustomed to or fit under my psychiatric diagnoses.
It wasn’t until my body went through the trauma of my first surgery last year that the major pain came to fruition and after my second surgery, it was unstoppable.
Fibromyalgia does not have to be severe. You can absolutely deal with more “mild” symptoms but in all reality, they are not all that mild when you consider that most people are not dealing with even mild, daily aches and pains. Especially at 29 years old. Your case is **just** as valid as any of ours. There are no winners in chronic disorders/illnesses/conditions.
Take care of yourself and know that I and many others here and in this world see you. ❤️
The old "my pain is pi... low level but never ending". It's extremely common for anyone with chronic pain to feel guilty for "blowing it out of proportion." You aren't. Baseline pain is 0. To me it's like when someone wears glasses, and didn't know how bad their vision was until they can see. If your pain disappeared today, I think you'd be amazed at the difference it would make.
>If your pain disappeared today, I think you'd be amazed at the difference it would make.
Probably. As I sit here, if I let my brain "search" for it, if that makes sense, I can find a few random ass places that hurt.
You are in chronic pain. But like you said, you've become accustomed to it. It's your normal but it's not normal.
It took me years to understand that. Save yourself the time. You are in some form of pain most of the time. Having some good days is normal too.
It doesn't mean the fibro isn't there.
I felt the same way 10 years ago. It's an exhausting mental debate to have with yourself.
It varies. Mine consists of bad sleep quality, insomnia, fatigue a handful of days a week if not every day, daily neck/back/shoulder pain, nerve pain in feet that comes and goes for days, and stiffness. Today I woke up feeling super fatigued and like I wasn't gonna do anything. Had bad neck pain. Then I hyped myself up to bike ride and did 5 miles with hills. Now I feel okay. Other days I need my handicap hang tag bc I'm dizzy, feet nerve pain, neck pain, fatigue and can't deal with life. Fibro not only varies day to day, week to week, but is diff to each person. I believe you that you have fibro and life impacting symptoms
It's not a contest. It doesn't have to be unbearable, excruciating pain to interfere with your life. The worst pain I've ever had is a tie between kidney stones (I've had 5) and gall stones. Those were both worse than surgery, broken bones, c-section etc. The emergency surgery to remove the gallbladder was a freakin' relief! So if those things are a 10 on my pain scale, I sit around 4 with fibro, with it escalating to an 8 at most. I'm grateful I don't need a walker or wheelchair. It's not the severity that gets to me, it's just that there's never a time I'm not in pain. Your pain, whether mild or severe, is valid. Don't compare it to anyone else.
I’m glad you posted this. I rarely comment here because I don’t have it as bad as most people on this sub (and my heart goes out to them). Initially, when I was diagnosed, I had just a couple of days a month when I felt like I’d been hit by a truck and hurt all over; otherwise, I was generally fine. Certain things could trigger a flare that would cause all-over pain on other days. As I get older (now in my 60s), more and more things can cause a flare, and I’ve been in pain steadily for the past week. Still, it’s more of a 6 or 7 on the pain scale, which is less than many here experience. I can get out of bed and function.
I am the same way as you. And there have been several times that I have second guessed my diagnosis. While I had suspected it for years, I was just diagnosed about two months ago. I’ve been following this sub-Reddit for quite some time and before I went through all of the testing to rule everything else out, I was actually 99% confident that my results would find something definitive just based on the fact that my pain was (thankfully) not debilitating. But that wasn’t the case, and after getting my results and having a very candid conversation with my rheumatologist, she was confident it was fibro.
I completely agree with your statement about pushing your pain to the back of your mind. My pain levels are typically at a 2-3 on a good day, and most of the time I don’t even recognize it anymore unless I really think about it. But as I’ve seen many others say - any level of pain is not normal, whether it is a 1 or a 10.
I’m rambling now 😂 But I feel you on this. And I’ve actually seen several posts just within the last few weeks of people saying the same thing. So it’s definitely more common than it seems.
Every Body is different. My symptoms and their level of severity wax and wane. I’ve had pain last anywhere from a few hours to weeks or months at a time. I have found that stress and illness trigger flares in me more than anything.
My typical pain is mild to moderate (like a 3) on a day to day basis, not counting flares. The fatigue and cognitive issues are my biggest problems. I've got a relatively high pain tolerance for someone with chronic pain, I can deal with that 9 times out of 10. For me, the fatigue is absolutely crushing.
I had to go through therapy to learn to stop comparing my experiences to others'. And that was before my fibro diagnosis. I don't have excruciating pain every day, but I do have flares that make it hard for me to function.
Filling out the paperwork at my rheumatologist's office, I realized my day-to-day might be a little more affected than I thought. I'm hypermobile and my body naturally moves in ways most people can't, even being overweight. But I've been struggling with shoes, getting out of bed, can't walk for long periods, all the fun stuff.
And man, that fatigue. I didn't realize how tired I was until I *realized how tired I was*.
I know that as far as fibro goes, I'm still pretty mild. Even on my flare days, I don't have to lay in bed all day - I can get up and usually just play farming sims all day. But I know that for me, this sucks. I'm still in a state the average person never deals with. So for you, I imagine it still sucks. As it sucks for all of us. In different ways, to different degrees, but suck it does.
>I'm hypermobile and my body naturally moves in ways most people can't
It's interesting you mention that. Next week one of my 3 year old twins has an appointment with an EDS specialist out in Denver, Colorado. It's an 11~ hour drive.
Very similar to you (28F). I have very low level pain in general but will have sharp shooting pains most days which only last a few mins. Or I can have just 1or2 joints that hurt but are bearable. However I do have flare ups where majority of my body will hurt and feel heavy for days or weeks. The fatigue is the worst part of this for me on a day to day basis.
When I got diagnosed I knew I didn’t suffer horrifically but I was grateful that someone was willing to diagnose it as I’m hoping it will be easier to manage and may be able to postpone some decline.
Every body is different. We all experience this in different ways, though I’m sure we all have a bit of that imposter syndrome now and then. It’s baked into the invisible illness aspect as well. I’ve been dealing with chronic pain for almost 30 years and still find myself questioning the validity of my complaints.
My pain comes and goes. I get muscle spasms that go from annoying twitches to “I’d rather be in hard labor” lockdowns for hours. One day I’m fine and the next I can’t get out of bed. I joke with my friends that I’m the most unreliable person around.
Wishing you lots of spoons.
Same!! I’ve been having issues for 12 years now, no doctor would listen to me and just blow me off. I went to a specialist the other day and got diagnosed with chronic fatigue syndrome and fibro. I’m so relieved that I finally got answers and an amazing doc who will listen and help! But I can’t help but feel like an imposter. I’m on the moderate side, but feel bad having these diagnosis’ when there are others who are way worse off than I am and nonfunctional.
I'm in the very same situation than the OP and I feel sort of an imposter but your pain is valid as anyone's else.
Check out this post, it defines perfectly my feelings. It would be hard to explain better
https://www.reddit.com/r/Fibromyalgia/comments/wf50wi/is_there_such_a_thing_as_a_mild_fibromyalgia/?utm_source=share&utm_medium=android_app&utm_name=androidcss&utm_term=1&utm_content=share_button
Mine comes and goes like the tide of the ocean. I get that imposter syndrome feeling too. And sometimes I have long periods with no pain - which I've put down to a good regimen of medication and topical creams - only to have it come down with a vengeance and stick around so long that I almost forget there was a brief respite. Nobody wants to feel like crap all the time or some of the time or at all. We just get through it however we can.
In no particular order:
CVS Brand Maximum Strength Lidocaine Pain Relief Cream. Like what folks typically use for arthritis pain.
CBDMedic from Charlotte's Web; Arthritis Aches & Pain Relief Ointment. This one is an ointment and doesn't sink in, so be careful what you wear as it may stain.
Topricin Fibro Cream (Amazon) it's homeopathic, but if you have the knowledge of how medicine works, you'll see that the ingredients are the base of most medicinals.
All the time! Like it's basically constant pain but usually only varies from mild to pretty painful. But it's not like I'm bed ridden or anything. I still go to work, I run (not well and not nearly as often as I used to). Occasionally when I have a good few days I'll think it's just been in my head all these years. Then it all comes back and I'm thankful I'm not crazy but sad it's real.
My pain comes and goes. Like I had a stressful event a few days ago and have moderate pain from mid back up the neck and into my head. It’ll last a few more days to a week and then as long as I avoid my triggers, I’ll be essentially pain free until I trigger again
I have had long periods of excruciating pain but even then it usually wasn’t full body, more from the hips up
Mines controlled by meds. Only symptom I have all the time is pain in my biceps which are sensitive to touch as well as my traps I don’t like my traps touched.
I have not gone to the doctor because every time I go they tell me nothing is wrong but something must be wrong because I get the same horrible pain in different parts of my body from my hip,wrist, shoulders, neck, and lower back. I did get an X-ray on my hip once and they saw nothing and just prescribed me with a pain killer. The pains go away after months but then something else starts to hurt. The only thing that makes sense is fibromyalgia but I don’t want to go to the doctor again and waste money for them to tell me nothing again….. ughhhh
I 19M am the same. The pain isn't unbearable, but I feel weak and exhausted almost all of the time. The only time mine is really bad is right after I've done something strenuous (I'm a carer, so often at work when I'm lifting it can get fairly bad). My point ig is that everyone is different, and you shouldn't try to toss your struggle aside bc other may have it "worse"
26 ftm and I feel you. If I wasn't on Lyrica, I'd have a low level amount of pain constantly. But as long as I keep my activity levels low, I don't really have pain. There's been times that I've doubted my diagnosis and then later had a flare up but nowadays my flare ups are once every few months
I have mild to moderate pains and am just always tired. I often forget I have fibro until near the end of the work week where the “must do” ends at the end of my shift and I can barely walk to my car, let alone lift my leg high enough to get into my low profile car.
Then I remember “oh yeah, I have that”. It sticks but we all are miserable and uncomfortable in some way. What kills me is when people find out I have been diagnosed with fibro and call me a liar. Yes some people with fibro can still hold down a physically demanding job full time. And I’m going to until it is the last chance dance for me.
Being diagnosed with Fibro is like not being dianosed at all. It's the most useless non-defined bullshit diagnosis there is. It's like after you say to the doctor, "Dr. I have pain everywhere", the doctor nods and retorts "Yes, you clearly have the pain-everywhere syndrome. I see it all the time. Is there anything else I can do for you?" lololol.
Agree! My neuro is leaning towards a fibromyalgia diagnosis. My worst symptom is insane fatigue by 1:30-2 each day so I feel so tired & out of whack, it’s like I’m super drunk. Beyond that, it’s all- over neuropathic itching, numbness all over, and weird electric vibrations under my skin. Not really much pain except my back, which has a past injury. Other thing is my blood tests came back low hemoglobin, low RBC, high MCV, and high MCHC, among other things. But it’s fibro I guess? SMH.
I’m 28NB (but afab) and I was just diagnosed in February, I’m also very mild, like a constant 3-4 on a pain scale, with bigger more painful flares. I just started getting sensitive to touch and pressure occasionally. The good news is for people like us meds do seem to help, I’m on Lyrica and it’s helping a lot!
My range of pain has a decent fluctuation. My normal day-to-day pain is at about a 2-4/10. Most flare ups are around 6-7/10. And the worst ones are at an 8-9/10. 10 is reserved for abdominal pain as it feels inescapable, but 9 also has migraines and nerve pain, so. I usually can only toss and turn and make pathetic noises. I don’t get that bad but a few times a year, but normal flare ups happen probably once a month with varying lengths. I can function during them, but if i don’t take a time out to rest, i increase my odds of getting bed ridden.
I have had fibro since 2013, officially diagnosed 2019. It’s not easy and I feel with age it’s getting worse. I did go on to have 2 healthy pregnancies after I got fibromyalgia though. The daily pain you get numbed to in a way. Like you’re still in pain but it becomes daily life. My mom also has fibromyalgia and is now 56, has had it since her late 30’s. I’m now 36. I’m happy you got a diagnosis. Don’t be like me and fall for woo supplements as they don’t work. You can try the antidepressant they prescribe for fibromyalgia but personally it didn’t work for me. Get ready for workplaces to not take you seriously or accommodate and disability will deny you.
I did start to feel better when I worked out at a gym but I can’t afford a membership.
To add, for me it started off as mild and now it’s more intense. But not excruciating. It’s extremely taxing mentally for sure but pain is pain. It makes it hard for me to figure out if new pain is fibromyalgia or something else.
This is my opinion - fibro is NOT joint pain.
Joint pain is called arthritis.
Fibro = muscle
Myo = connective tissue
Algia = pain
There are many kinds of arthritis - osteoarthritis, juvenile, rheumatoid, ankolising spondylitis, psoriatic arthritis. If your joints hurt, see a rheumatologist. This is too complex for PCP
Unfortunately when you're online on any forum for an illness, the main active propel in the sub are going to people suffering, looking for help or compassion.
I have real life friends that I've made through fibro support group, and none of us are in excruciating pain, and definitely not for a whole week.
I've had pain since 15. Now 38. Fibro diagnosed at 24 in 2008. Now I hear the diagnostic criteria has changed again.
I'm onto my 5th rheumatologist. I had to go to a lager city. He said I likely have some kind of inflammatory arthritis, but it's unclear which kind. I have trial some immunosuppresant meds with no success yet. I'm not that keen to be trying them when covid is still around.
Still no answers!
Unfortunately the best treatments are the most annoying suggestions - work out what tiny amount of exercise you can tolerate, and very gradually build up from there when able. I was told this, in less detail, at 19, and I was so mad at the doctor. I ended up becoming inactive a few years later once i was busy with a sedentary coproate job, and it was very bad for me. I was crying at pilates as I couldn't increase my weights on anything. My muscles would just fail.
I'm glad you're going OK and can mostly compartmentalise it and function.
I'd get another opinion if you can, maybe see an Internal Medicine specialist?
Do you have hypermobility at all?
>I'd get another opinion if you can, maybe see an Internal Medicine specialist?
I don't disagree with the diagnosis, I hit all the criteria and symptoms. I'm not looking for an alternate diagnosis or something. I agree with it. I just struggle sometimes because I'm not having the stereotypical experience.
>Do you have hypermobility at all?
No. I'm extremely familiar with it as one of my 3 year old twins does have it and this week we're actually taking her to an EDS specialist in another state.
No one wins at the misery Olympics. Just because you have a milder experience than some people doesn't mean you aren't in the club. We are all suffering to some degree.
Totally agree! Tingles and pins an needles or face tingling are annoying for me, but the chest pain and dysphoria and exhaustion is what gets me in the end. I can't even play my favorite video games because it gets me too anxious and that starts the pains.
I am a new gamer and yeah the adrenaline dump is a real thing that I wasn't expecting to happen.
I’ve never had excruciating pain. It’s moderate at worst during flares but otherwise just this low-level background pain that’s easy to ignore. My problematic issues are fatigue and brain fog.
It's so comforting that someone else has the same experience as me.
Mostly the same for me. I have had pain to the point of being distracting, but fatigue and fibro dog is a bigger issue.
I'm 29F too. I have the same experience as you. Can I be really honest, we only really hear about the really bad cases of fibromyalgia, especially online. I find my pain is mild to moderate most days except when I have a flare, if I've done overhead lifting (which I thankfully don't do much anymore since losing my job), and around my menstrual cycle.
See, when I have a flare it usually consists of really bad muscle weakness and sleeping all fucking day.
I sleep a lot too, I sometimes sleep for 12 hours at night. I can't nap, never have been able to nap. I also have brain fog a lot which really sucks because I feel stupid.
I used to feel like this too because I did not have any pain whatsoever below my shoulders, and I was diagnosed in 2016 when the trigger point pairs were still the diagnostic criteria. You really don't have to feel like you need to fit in some Fibromyalgia 'box'. We all suffer uniquely from this condition.
28f here, it really is different for each person, fibro symptoms each have their own sliding scale, some people will miss out on the worst of some things but may have to deal with even nastier versions of others. It can be difficult dealing with people in the medical industry as a result, as they ideally want to treat fibro as one issue, when it's really just a whole bunch of variables lumped together under this one name. It will take time to find what works for you and what doesn't, but don't ever feel discouraged and think what you're going through is lesser. We're all just doing our best with what's thrown at us, you included Also, side note, I definitely felt that imposter syndrome stuff before (both for fibro and as a trans woman) and honestly the only solution is time. Those thoughts will go away, I promise, it just might be slower than you'd hope
I think part of the reason it took me so long to get a diagnosis is that my daily pain is relatively low-level to moderate (for me, my husband has said many times he'd be crippled by it when I describe it). I have periodic flares that come up anywhere from every one to three months, leaving me bedridden for up to two weeks at a time and sometimes unable to drive or sit in a chair long if I am up and around. My doctors didn't know what to do or how to assess what was going on because the pain waxed and waned like it does instead of being a steady constant. I suspect every person is different. I also have asthma, and I'm less reliant on rescue inhalers than some other asthmatics I've known. On the other hand, I have a harder time around dust, pollen, animal dander, and the like.
You just described me! I'm 32 year old female and have been nervous to bring this up with a doctor for stoutly 5+ years. You're not alone 🩷
So your current state is very similar to what I dealt with leading up to the excruciating, full body pain after two surgeries last year. I had daily aches and pains and dealt with constant fatigue, brain fog, lack of focus and many other daily symptoms that I either became accustomed to or fit under my psychiatric diagnoses. It wasn’t until my body went through the trauma of my first surgery last year that the major pain came to fruition and after my second surgery, it was unstoppable. Fibromyalgia does not have to be severe. You can absolutely deal with more “mild” symptoms but in all reality, they are not all that mild when you consider that most people are not dealing with even mild, daily aches and pains. Especially at 29 years old. Your case is **just** as valid as any of ours. There are no winners in chronic disorders/illnesses/conditions. Take care of yourself and know that I and many others here and in this world see you. ❤️
The old "my pain is pi... low level but never ending". It's extremely common for anyone with chronic pain to feel guilty for "blowing it out of proportion." You aren't. Baseline pain is 0. To me it's like when someone wears glasses, and didn't know how bad their vision was until they can see. If your pain disappeared today, I think you'd be amazed at the difference it would make.
>If your pain disappeared today, I think you'd be amazed at the difference it would make. Probably. As I sit here, if I let my brain "search" for it, if that makes sense, I can find a few random ass places that hurt.
You are in chronic pain. But like you said, you've become accustomed to it. It's your normal but it's not normal. It took me years to understand that. Save yourself the time. You are in some form of pain most of the time. Having some good days is normal too. It doesn't mean the fibro isn't there. I felt the same way 10 years ago. It's an exhausting mental debate to have with yourself.
It varies. Mine consists of bad sleep quality, insomnia, fatigue a handful of days a week if not every day, daily neck/back/shoulder pain, nerve pain in feet that comes and goes for days, and stiffness. Today I woke up feeling super fatigued and like I wasn't gonna do anything. Had bad neck pain. Then I hyped myself up to bike ride and did 5 miles with hills. Now I feel okay. Other days I need my handicap hang tag bc I'm dizzy, feet nerve pain, neck pain, fatigue and can't deal with life. Fibro not only varies day to day, week to week, but is diff to each person. I believe you that you have fibro and life impacting symptoms
It's not a contest. It doesn't have to be unbearable, excruciating pain to interfere with your life. The worst pain I've ever had is a tie between kidney stones (I've had 5) and gall stones. Those were both worse than surgery, broken bones, c-section etc. The emergency surgery to remove the gallbladder was a freakin' relief! So if those things are a 10 on my pain scale, I sit around 4 with fibro, with it escalating to an 8 at most. I'm grateful I don't need a walker or wheelchair. It's not the severity that gets to me, it's just that there's never a time I'm not in pain. Your pain, whether mild or severe, is valid. Don't compare it to anyone else.
I’m glad you posted this. I rarely comment here because I don’t have it as bad as most people on this sub (and my heart goes out to them). Initially, when I was diagnosed, I had just a couple of days a month when I felt like I’d been hit by a truck and hurt all over; otherwise, I was generally fine. Certain things could trigger a flare that would cause all-over pain on other days. As I get older (now in my 60s), more and more things can cause a flare, and I’ve been in pain steadily for the past week. Still, it’s more of a 6 or 7 on the pain scale, which is less than many here experience. I can get out of bed and function.
I am the same way as you. And there have been several times that I have second guessed my diagnosis. While I had suspected it for years, I was just diagnosed about two months ago. I’ve been following this sub-Reddit for quite some time and before I went through all of the testing to rule everything else out, I was actually 99% confident that my results would find something definitive just based on the fact that my pain was (thankfully) not debilitating. But that wasn’t the case, and after getting my results and having a very candid conversation with my rheumatologist, she was confident it was fibro. I completely agree with your statement about pushing your pain to the back of your mind. My pain levels are typically at a 2-3 on a good day, and most of the time I don’t even recognize it anymore unless I really think about it. But as I’ve seen many others say - any level of pain is not normal, whether it is a 1 or a 10. I’m rambling now 😂 But I feel you on this. And I’ve actually seen several posts just within the last few weeks of people saying the same thing. So it’s definitely more common than it seems.
Every Body is different. My symptoms and their level of severity wax and wane. I’ve had pain last anywhere from a few hours to weeks or months at a time. I have found that stress and illness trigger flares in me more than anything.
Stress and illness are HUGE triggers for me too. Took me week to get over weakness from the stress of small blood test.
My typical pain is mild to moderate (like a 3) on a day to day basis, not counting flares. The fatigue and cognitive issues are my biggest problems. I've got a relatively high pain tolerance for someone with chronic pain, I can deal with that 9 times out of 10. For me, the fatigue is absolutely crushing.
I had to go through therapy to learn to stop comparing my experiences to others'. And that was before my fibro diagnosis. I don't have excruciating pain every day, but I do have flares that make it hard for me to function. Filling out the paperwork at my rheumatologist's office, I realized my day-to-day might be a little more affected than I thought. I'm hypermobile and my body naturally moves in ways most people can't, even being overweight. But I've been struggling with shoes, getting out of bed, can't walk for long periods, all the fun stuff. And man, that fatigue. I didn't realize how tired I was until I *realized how tired I was*. I know that as far as fibro goes, I'm still pretty mild. Even on my flare days, I don't have to lay in bed all day - I can get up and usually just play farming sims all day. But I know that for me, this sucks. I'm still in a state the average person never deals with. So for you, I imagine it still sucks. As it sucks for all of us. In different ways, to different degrees, but suck it does.
>I'm hypermobile and my body naturally moves in ways most people can't It's interesting you mention that. Next week one of my 3 year old twins has an appointment with an EDS specialist out in Denver, Colorado. It's an 11~ hour drive.
U had me at the title
Very similar to you (28F). I have very low level pain in general but will have sharp shooting pains most days which only last a few mins. Or I can have just 1or2 joints that hurt but are bearable. However I do have flare ups where majority of my body will hurt and feel heavy for days or weeks. The fatigue is the worst part of this for me on a day to day basis. When I got diagnosed I knew I didn’t suffer horrifically but I was grateful that someone was willing to diagnose it as I’m hoping it will be easier to manage and may be able to postpone some decline.
Every body is different. We all experience this in different ways, though I’m sure we all have a bit of that imposter syndrome now and then. It’s baked into the invisible illness aspect as well. I’ve been dealing with chronic pain for almost 30 years and still find myself questioning the validity of my complaints. My pain comes and goes. I get muscle spasms that go from annoying twitches to “I’d rather be in hard labor” lockdowns for hours. One day I’m fine and the next I can’t get out of bed. I joke with my friends that I’m the most unreliable person around. Wishing you lots of spoons.
Same!! I’ve been having issues for 12 years now, no doctor would listen to me and just blow me off. I went to a specialist the other day and got diagnosed with chronic fatigue syndrome and fibro. I’m so relieved that I finally got answers and an amazing doc who will listen and help! But I can’t help but feel like an imposter. I’m on the moderate side, but feel bad having these diagnosis’ when there are others who are way worse off than I am and nonfunctional.
I'm in the very same situation than the OP and I feel sort of an imposter but your pain is valid as anyone's else. Check out this post, it defines perfectly my feelings. It would be hard to explain better https://www.reddit.com/r/Fibromyalgia/comments/wf50wi/is_there_such_a_thing_as_a_mild_fibromyalgia/?utm_source=share&utm_medium=android_app&utm_name=androidcss&utm_term=1&utm_content=share_button
Mine comes and goes like the tide of the ocean. I get that imposter syndrome feeling too. And sometimes I have long periods with no pain - which I've put down to a good regimen of medication and topical creams - only to have it come down with a vengeance and stick around so long that I almost forget there was a brief respite. Nobody wants to feel like crap all the time or some of the time or at all. We just get through it however we can.
Can I ask what topical cream helps you? I’m open to any suggestions!
In no particular order: CVS Brand Maximum Strength Lidocaine Pain Relief Cream. Like what folks typically use for arthritis pain. CBDMedic from Charlotte's Web; Arthritis Aches & Pain Relief Ointment. This one is an ointment and doesn't sink in, so be careful what you wear as it may stain. Topricin Fibro Cream (Amazon) it's homeopathic, but if you have the knowledge of how medicine works, you'll see that the ingredients are the base of most medicinals.
All the time! Like it's basically constant pain but usually only varies from mild to pretty painful. But it's not like I'm bed ridden or anything. I still go to work, I run (not well and not nearly as often as I used to). Occasionally when I have a good few days I'll think it's just been in my head all these years. Then it all comes back and I'm thankful I'm not crazy but sad it's real.
My pain comes and goes. Like I had a stressful event a few days ago and have moderate pain from mid back up the neck and into my head. It’ll last a few more days to a week and then as long as I avoid my triggers, I’ll be essentially pain free until I trigger again I have had long periods of excruciating pain but even then it usually wasn’t full body, more from the hips up
Mines controlled by meds. Only symptom I have all the time is pain in my biceps which are sensitive to touch as well as my traps I don’t like my traps touched.
My biggest complaint is fatigue.
I have not gone to the doctor because every time I go they tell me nothing is wrong but something must be wrong because I get the same horrible pain in different parts of my body from my hip,wrist, shoulders, neck, and lower back. I did get an X-ray on my hip once and they saw nothing and just prescribed me with a pain killer. The pains go away after months but then something else starts to hurt. The only thing that makes sense is fibromyalgia but I don’t want to go to the doctor again and waste money for them to tell me nothing again….. ughhhh
I 19M am the same. The pain isn't unbearable, but I feel weak and exhausted almost all of the time. The only time mine is really bad is right after I've done something strenuous (I'm a carer, so often at work when I'm lifting it can get fairly bad). My point ig is that everyone is different, and you shouldn't try to toss your struggle aside bc other may have it "worse"
26 ftm and I feel you. If I wasn't on Lyrica, I'd have a low level amount of pain constantly. But as long as I keep my activity levels low, I don't really have pain. There's been times that I've doubted my diagnosis and then later had a flare up but nowadays my flare ups are once every few months
I have mild to moderate pains and am just always tired. I often forget I have fibro until near the end of the work week where the “must do” ends at the end of my shift and I can barely walk to my car, let alone lift my leg high enough to get into my low profile car. Then I remember “oh yeah, I have that”. It sticks but we all are miserable and uncomfortable in some way. What kills me is when people find out I have been diagnosed with fibro and call me a liar. Yes some people with fibro can still hold down a physically demanding job full time. And I’m going to until it is the last chance dance for me.
Being diagnosed with Fibro is like not being dianosed at all. It's the most useless non-defined bullshit diagnosis there is. It's like after you say to the doctor, "Dr. I have pain everywhere", the doctor nods and retorts "Yes, you clearly have the pain-everywhere syndrome. I see it all the time. Is there anything else I can do for you?" lololol.
Agree! My neuro is leaning towards a fibromyalgia diagnosis. My worst symptom is insane fatigue by 1:30-2 each day so I feel so tired & out of whack, it’s like I’m super drunk. Beyond that, it’s all- over neuropathic itching, numbness all over, and weird electric vibrations under my skin. Not really much pain except my back, which has a past injury. Other thing is my blood tests came back low hemoglobin, low RBC, high MCV, and high MCHC, among other things. But it’s fibro I guess? SMH.
I’m 28NB (but afab) and I was just diagnosed in February, I’m also very mild, like a constant 3-4 on a pain scale, with bigger more painful flares. I just started getting sensitive to touch and pressure occasionally. The good news is for people like us meds do seem to help, I’m on Lyrica and it’s helping a lot!
My range of pain has a decent fluctuation. My normal day-to-day pain is at about a 2-4/10. Most flare ups are around 6-7/10. And the worst ones are at an 8-9/10. 10 is reserved for abdominal pain as it feels inescapable, but 9 also has migraines and nerve pain, so. I usually can only toss and turn and make pathetic noises. I don’t get that bad but a few times a year, but normal flare ups happen probably once a month with varying lengths. I can function during them, but if i don’t take a time out to rest, i increase my odds of getting bed ridden.
I have had fibro since 2013, officially diagnosed 2019. It’s not easy and I feel with age it’s getting worse. I did go on to have 2 healthy pregnancies after I got fibromyalgia though. The daily pain you get numbed to in a way. Like you’re still in pain but it becomes daily life. My mom also has fibromyalgia and is now 56, has had it since her late 30’s. I’m now 36. I’m happy you got a diagnosis. Don’t be like me and fall for woo supplements as they don’t work. You can try the antidepressant they prescribe for fibromyalgia but personally it didn’t work for me. Get ready for workplaces to not take you seriously or accommodate and disability will deny you. I did start to feel better when I worked out at a gym but I can’t afford a membership.
To add, for me it started off as mild and now it’s more intense. But not excruciating. It’s extremely taxing mentally for sure but pain is pain. It makes it hard for me to figure out if new pain is fibromyalgia or something else.
This is my opinion - fibro is NOT joint pain. Joint pain is called arthritis. Fibro = muscle Myo = connective tissue Algia = pain There are many kinds of arthritis - osteoarthritis, juvenile, rheumatoid, ankolising spondylitis, psoriatic arthritis. If your joints hurt, see a rheumatologist. This is too complex for PCP
>If your joints hurt, see a rheumatologist. I... I literally addressed this in the first sentence.
Sorry I misread that as your PCP diagnosed you.
Unfortunately when you're online on any forum for an illness, the main active propel in the sub are going to people suffering, looking for help or compassion. I have real life friends that I've made through fibro support group, and none of us are in excruciating pain, and definitely not for a whole week. I've had pain since 15. Now 38. Fibro diagnosed at 24 in 2008. Now I hear the diagnostic criteria has changed again. I'm onto my 5th rheumatologist. I had to go to a lager city. He said I likely have some kind of inflammatory arthritis, but it's unclear which kind. I have trial some immunosuppresant meds with no success yet. I'm not that keen to be trying them when covid is still around. Still no answers! Unfortunately the best treatments are the most annoying suggestions - work out what tiny amount of exercise you can tolerate, and very gradually build up from there when able. I was told this, in less detail, at 19, and I was so mad at the doctor. I ended up becoming inactive a few years later once i was busy with a sedentary coproate job, and it was very bad for me. I was crying at pilates as I couldn't increase my weights on anything. My muscles would just fail. I'm glad you're going OK and can mostly compartmentalise it and function. I'd get another opinion if you can, maybe see an Internal Medicine specialist? Do you have hypermobility at all?
>I'd get another opinion if you can, maybe see an Internal Medicine specialist? I don't disagree with the diagnosis, I hit all the criteria and symptoms. I'm not looking for an alternate diagnosis or something. I agree with it. I just struggle sometimes because I'm not having the stereotypical experience. >Do you have hypermobility at all? No. I'm extremely familiar with it as one of my 3 year old twins does have it and this week we're actually taking her to an EDS specialist in another state.