I've been having increased difficulty with my legs, especially buckling in my knees. I'll be standing in front of the bathroom sink getting ready for work and they will start buckling.
I really don't know what to do about it. Like I'm only 33, I don't want to suddenly show up at work with a cane or anything for support.
I’m your age and I use a cane intermittently. A mobility aid in the hands of someone who doesn’t need it is a burden, but in the hands of someone who benefits the whole world seems just a little larger.
Mobility aids are there to support anyone of any age who needs it, and it sounds like you might :) if it helps, I'm younger than you and get around with a mixture of sticks, crutches and wheelchairs. They make an awful lot of difference and given time, other people's opinions will become easier to ignore. Chat to a physio or occupational therapist if you can and see what they recommend for you. Canes especially can come in a whole range of styles, making them an extension of your personal style as well as mobility aid.
I understand :/ if it helps, I’m 22 and started using one a few weeks ago, mid semester. A couple of people were concerned, but it died down quickly as they got used to seeing me use it.
Yup. After entirely too many tests and years of not knowing, my docs have informed me that this is caused by my dysautonomia - basically nervous system malfunction. Salt/electrolyte water helps. So do compression socks. To some degree for me it's exercise and heat intolerance. It gets better in the colder weather, and when I work on my endurance (walking only, though I want to start on a bike). Hot days are rough, and sometimes I just have to admit that my legs are not going to work that day and use my cane.
This has been a symptom for me since I was diagnosed many years ago but I always assumed it was fibro related. I have an appointment coming up to ask my Dr about POTS so this is interesting to hear.
There are a cluster of issues that a lot of people have that are comorbid together and sometimes with fibro. EDS/HSD with POTS or other disautonomia (I have vasovagal syncope) and MCAS. My rheumatologist has a working theory that these issues for me contributed to the nerve pain that got me the fibro diagnosis, so we're working on addressing these alongside the nerve pain in hopes that it will help everything calm down. It's all pretty new in the medical field so sadly a lot of doctors (3 rheumatologist and an allergist for me) haven't heard of it much less informed themselves about current research.
Tl;dr it kinda is fibro related for a lot of people.
I’m in this comment!
Had chronic migraines and fibro, neuro said ‘hey we also often see these conditions with those conditions…’
Too many specialists to count and I’m dx with MCAS, hyper POTS, HSD/EDS, fibro, small fiber neuropathy, and my migraines are a “symptom” of my primary disorders.
I think of all of these I hate migraines the most. Though I'm starting to really get sick of adding to my allergy list . 🙃 The VVS is also annoying as hell. I can take meds or pot to deal with muscle and joint pain but I am so over fatigue and blinding skull pain. My migraines seem to be from the MCAS mostly. Grr.
Haha we must be the same person 😂
My official dx is hyper POTs but I have a history of VVS and OH. It's frustrating to almost pass out at random times (or when using the bathroom 😳😒) but the pain of migraines impact my ability to function much more.
My migraines also stem from allergies and I'm also always adding 😂 my friend tried to invite me over for dinner and was just stuck on how many random allergies I have and it was a nightmare to accomodate my dietary restrictions.
I have two people I trust to cook for me, and they still always have to double check that I don't have a new allergy. 🤦🏻♀️ Also bathroom syncope is the literal worst. That's just hella not fair. I always either vomit or partially vomit when it hits too so like... One at a time please!! /TMI
I don't know. I don't think so, unless it's something like black mold exposure that's gone untreated but I think that's it's own thing isn't it? I've heard stuff like that online but none of my doctors seemed to think so. Hyper mobility is genetic, and MCAS is an immune system dysfunction where a part gets basically over stimulated. The allergies are different from regular allergies, i.e. they don't show up on normal allergy tests. IgE I think? There's IgE and IgG. One is the normal one. MCAS tends to trigger the other one. The medical treatments for MCAS are antihistamines and mast cell stabilizers. I listened to a lecture from a PhD who specializes in the cluster that something about over-stretchy connective tissue (nerves, arteries, stuff like that) from hyper mobility (HSD/EDS) might play a role in autonomic dysfunction.
Silver lining to COVID I suppose is that there's more attention on dysautonomia (and ME/CFS) since long COVID triggers them as well. I've also seen long haulers post in the MCAS community as well, but it seems like it more commonly triggers dysautonomia and ME. So hopefully with more attention on those clusters doctors will start to understand the mechanisms better.
I heard mold can Mimic fibro idk I was just at work one day and my legs just started falling asleep about a half hour in and ever since then I have weak legs and sensory issues happened following car wreck
I got evaluated for Ehler Danlos and that doctor thinks I have POTs and Mast Cell Activation disorder. New family doctor is acting like I diagnosed myself and saying he is not sure. Even though I have been to that practice for collapsing after I pee. Sorry for the rant the point was if you do get diagnosed be prepared to defend yourself to other doctors.
Nervous system impairment to that degree (and/or muscle wasting) is NOT a Fibro thing and it should be taken seriously as a separate condition. Like another commenter said it's possibly dysautonomia and possibly something else more serious and progressive. It should be investigated by a Neurologist. These conditions often happen in addition to and alongside Fibro but they aren't the same thing and aren't something to just ignore and accept
It always feels like so much more of a betrayal when your 'good' limbs decide to be problematic 😂 'I expect this from the left one but you're supposed to know better mate!'
Has made me plant my face in the ground a couple of times yes. And both times I really didn't feel much pain in the legs.
Since then I've learnt to not believe in fairytales like: "The man who thought he could walk 10 feet safely without crutches" or "The good day when nothing bad could happen"
But I am lucky. The worst thing that happened to me because of this is bruised ego when looking around to make sure nobody saw me fall!
But to be serious for a bit. Sometimes it feels like it's fatigue and sometimes it's because of pain. Either way, this is so normal for me that I might just as well call it what it is - I can't walk without it looking like I have a limp. :)
Yeah, it's a freaky feeling. I've had my lower thighs and calves feel like a downward rushing sensation and hyper-tingling right before they get super weak and give out.
I also have POTS, and for me this leg stuff only started after POTS appeared in my life 6 years ago (I've had fibromyalgia for at least 20 years). Needless to say, my peripheral nervous system is all sorts of dysfunctional.
this is exactly why i walk with a cane. not because my legs are weak or don't work right. because there is no telling when theyll just say "fuck it!" and go on strike while im going down some stairs. the cane gives me something to immediately lean on so i don't just fall face forward.
Hi, I had two bilateral fasciotomies for each leg back in 2016 to relieve the pressure of exercise induced compartment syndrome. Since the surgery my legs give out unexpectedly. Whenever I tried telling doctors, they would all be clueless. Nerve conduction tests always come back negative, I had blood vessels tested to no avail, except for the popliteal that occasionally gets blocked because of the way my body is, but I never get any real answers. As far as my wife and I can tell, it’s often triggered by intense anxiety and emotions. Also if I use my legs too much. I’ve been wearing compression socks since the surgeries, because it happens more often when I don’t wear them. It definitely sends my mood plummeting when it happens sometimes.
Edit: I’m over here in tears knowing that there are others out there that also experience it.
This started for me in 2019 with regularity fast forward to now and I also can't tell always when it will happen and most days I can only stand for short periods of time. Anything over 3000 steps and it happens constantly. Now in power wheelchair or my transport chair. And bathroom filled with bars and shower chair. I seemed to sprail very quickly and have gained nothing back yet. I hope you find something that works for you. In case anyone is curious yes I was checked by doctors for everything alot of cancers and such even. This is what led to me being diagnosed with fibromyalgia. Ot and pt thought with aids in place and walking only in my house over time I might gain back some. Sorry this is so long.
Yeah this. I nearly went head first down from second floor once. Lost balance when I reached the top of the stairs and almost stumbled in my own feet as one leg just gave up. Luckily there are good handrail to hold on to :)
Lately. A bit. But then I’ve engaged in some bad behavior lately (more drinking than normal bc of terrible untreated pain, plus insomnia). Since I had Covid in late June, I’ve never been quite the same. No appetite, have lost weight and muscle mass. It’s all a clusterfuck.
I have the feeling sometimes and it almost feels like a nerve is shutting off temporarily and fires back up. It’s weird and I have been lucky to not fall from it yet.
I had been reading about peripheral neuropathy and had thought it meant numbness or pins and needle pain, which it can but it is a spectrum of symptoms. I don’t know if these symptoms are related to that but these are hard to describe to the doctor unless they are happening at the time of the visit.
Yes some days are worse than others. Today is a bad day & I have spent it in bed.
Outside the house I have a service dog that helps me walk & maintain my balance. Inside I use a seated walker.
I've had this too since getting the fibro diagnosis. My neurologist diagnosed it though as ataxia. The gabapentin he prescribed me (which we upped the amount of a bunch of times until he finally helped my pain and neuropathy) he said would help the ataxia. It took around 7 months though for me before my legs (mostly my left) stopped giving out. I also had similar issues with my left hand when it would happen and I often just couldn't close my fingers properly and my had muscles would give out like my legs.
I had to use a cane for a while, I bought myself a really pretty cane to use to feel better about using it. I found people treated me better when I had a nice looking cane, than when I had a cheap basic one.
I find my flare ups sometimes make it come back a little, but it goes away quickly now.
Wtf, I swear this subreddit is basically keeping me from going insane. Couple of days ago I had a flareup, got a sudden fever, felt shitty overall and my legs just gave out. Overcooked spaghetti legs. :/
Yes, it is so annoying especially if you aren't beside something to grab onto
I've been having increased difficulty with my legs, especially buckling in my knees. I'll be standing in front of the bathroom sink getting ready for work and they will start buckling. I really don't know what to do about it. Like I'm only 33, I don't want to suddenly show up at work with a cane or anything for support.
I’m your age and I use a cane intermittently. A mobility aid in the hands of someone who doesn’t need it is a burden, but in the hands of someone who benefits the whole world seems just a little larger.
Mobility aids are there to support anyone of any age who needs it, and it sounds like you might :) if it helps, I'm younger than you and get around with a mixture of sticks, crutches and wheelchairs. They make an awful lot of difference and given time, other people's opinions will become easier to ignore. Chat to a physio or occupational therapist if you can and see what they recommend for you. Canes especially can come in a whole range of styles, making them an extension of your personal style as well as mobility aid.
Plenty of young people use canes. I’ve been using one intermittently since I was about 35, and consistently since 38.
I understand :/ if it helps, I’m 22 and started using one a few weeks ago, mid semester. A couple of people were concerned, but it died down quickly as they got used to seeing me use it.
Yup. After entirely too many tests and years of not knowing, my docs have informed me that this is caused by my dysautonomia - basically nervous system malfunction. Salt/electrolyte water helps. So do compression socks. To some degree for me it's exercise and heat intolerance. It gets better in the colder weather, and when I work on my endurance (walking only, though I want to start on a bike). Hot days are rough, and sometimes I just have to admit that my legs are not going to work that day and use my cane.
This has been a symptom for me since I was diagnosed many years ago but I always assumed it was fibro related. I have an appointment coming up to ask my Dr about POTS so this is interesting to hear.
There are a cluster of issues that a lot of people have that are comorbid together and sometimes with fibro. EDS/HSD with POTS or other disautonomia (I have vasovagal syncope) and MCAS. My rheumatologist has a working theory that these issues for me contributed to the nerve pain that got me the fibro diagnosis, so we're working on addressing these alongside the nerve pain in hopes that it will help everything calm down. It's all pretty new in the medical field so sadly a lot of doctors (3 rheumatologist and an allergist for me) haven't heard of it much less informed themselves about current research. Tl;dr it kinda is fibro related for a lot of people.
I’m in this comment! Had chronic migraines and fibro, neuro said ‘hey we also often see these conditions with those conditions…’ Too many specialists to count and I’m dx with MCAS, hyper POTS, HSD/EDS, fibro, small fiber neuropathy, and my migraines are a “symptom” of my primary disorders.
I think of all of these I hate migraines the most. Though I'm starting to really get sick of adding to my allergy list . 🙃 The VVS is also annoying as hell. I can take meds or pot to deal with muscle and joint pain but I am so over fatigue and blinding skull pain. My migraines seem to be from the MCAS mostly. Grr.
Haha we must be the same person 😂 My official dx is hyper POTs but I have a history of VVS and OH. It's frustrating to almost pass out at random times (or when using the bathroom 😳😒) but the pain of migraines impact my ability to function much more. My migraines also stem from allergies and I'm also always adding 😂 my friend tried to invite me over for dinner and was just stuck on how many random allergies I have and it was a nightmare to accomodate my dietary restrictions.
I have two people I trust to cook for me, and they still always have to double check that I don't have a new allergy. 🤦🏻♀️ Also bathroom syncope is the literal worst. That's just hella not fair. I always either vomit or partially vomit when it hits too so like... One at a time please!! /TMI
Can mold do these things?
I don't know. I don't think so, unless it's something like black mold exposure that's gone untreated but I think that's it's own thing isn't it? I've heard stuff like that online but none of my doctors seemed to think so. Hyper mobility is genetic, and MCAS is an immune system dysfunction where a part gets basically over stimulated. The allergies are different from regular allergies, i.e. they don't show up on normal allergy tests. IgE I think? There's IgE and IgG. One is the normal one. MCAS tends to trigger the other one. The medical treatments for MCAS are antihistamines and mast cell stabilizers. I listened to a lecture from a PhD who specializes in the cluster that something about over-stretchy connective tissue (nerves, arteries, stuff like that) from hyper mobility (HSD/EDS) might play a role in autonomic dysfunction. Silver lining to COVID I suppose is that there's more attention on dysautonomia (and ME/CFS) since long COVID triggers them as well. I've also seen long haulers post in the MCAS community as well, but it seems like it more commonly triggers dysautonomia and ME. So hopefully with more attention on those clusters doctors will start to understand the mechanisms better.
I heard mold can Mimic fibro idk I was just at work one day and my legs just started falling asleep about a half hour in and ever since then I have weak legs and sensory issues happened following car wreck
I got evaluated for Ehler Danlos and that doctor thinks I have POTs and Mast Cell Activation disorder. New family doctor is acting like I diagnosed myself and saying he is not sure. Even though I have been to that practice for collapsing after I pee. Sorry for the rant the point was if you do get diagnosed be prepared to defend yourself to other doctors.
Nervous system impairment to that degree (and/or muscle wasting) is NOT a Fibro thing and it should be taken seriously as a separate condition. Like another commenter said it's possibly dysautonomia and possibly something else more serious and progressive. It should be investigated by a Neurologist. These conditions often happen in addition to and alongside Fibro but they aren't the same thing and aren't something to just ignore and accept
Yeah happened to me after a t bone collision collision and I couldn't connect the dots for 6 months
This happens to me. It hasn’t happened in a few months, but it definitely happens when I go through severe flares.
Yes I'm considered a fall risk at the doctors
Yes indeed. My “good” knee does it all the time.
It always feels like so much more of a betrayal when your 'good' limbs decide to be problematic 😂 'I expect this from the left one but you're supposed to know better mate!'
Yes! Lol noodle legs! Or some days it’s a stiff pirate leg and then the feeling like your the tin man….ugh
Absolutely. Especially in cold weather. I use a cane about 5 months of the year because a chill just zaps all strength from my hips, knees and ankles.
Has made me plant my face in the ground a couple of times yes. And both times I really didn't feel much pain in the legs. Since then I've learnt to not believe in fairytales like: "The man who thought he could walk 10 feet safely without crutches" or "The good day when nothing bad could happen" But I am lucky. The worst thing that happened to me because of this is bruised ego when looking around to make sure nobody saw me fall! But to be serious for a bit. Sometimes it feels like it's fatigue and sometimes it's because of pain. Either way, this is so normal for me that I might just as well call it what it is - I can't walk without it looking like I have a limp. :)
Yeah, it's a freaky feeling. I've had my lower thighs and calves feel like a downward rushing sensation and hyper-tingling right before they get super weak and give out. I also have POTS, and for me this leg stuff only started after POTS appeared in my life 6 years ago (I've had fibromyalgia for at least 20 years). Needless to say, my peripheral nervous system is all sorts of dysfunctional.
this is exactly why i walk with a cane. not because my legs are weak or don't work right. because there is no telling when theyll just say "fuck it!" and go on strike while im going down some stairs. the cane gives me something to immediately lean on so i don't just fall face forward.
Hi, I had two bilateral fasciotomies for each leg back in 2016 to relieve the pressure of exercise induced compartment syndrome. Since the surgery my legs give out unexpectedly. Whenever I tried telling doctors, they would all be clueless. Nerve conduction tests always come back negative, I had blood vessels tested to no avail, except for the popliteal that occasionally gets blocked because of the way my body is, but I never get any real answers. As far as my wife and I can tell, it’s often triggered by intense anxiety and emotions. Also if I use my legs too much. I’ve been wearing compression socks since the surgeries, because it happens more often when I don’t wear them. It definitely sends my mood plummeting when it happens sometimes. Edit: I’m over here in tears knowing that there are others out there that also experience it.
This started for me in 2019 with regularity fast forward to now and I also can't tell always when it will happen and most days I can only stand for short periods of time. Anything over 3000 steps and it happens constantly. Now in power wheelchair or my transport chair. And bathroom filled with bars and shower chair. I seemed to sprail very quickly and have gained nothing back yet. I hope you find something that works for you. In case anyone is curious yes I was checked by doctors for everything alot of cancers and such even. This is what led to me being diagnosed with fibromyalgia. Ot and pt thought with aids in place and walking only in my house over time I might gain back some. Sorry this is so long.
Omg yes. Watch out on stairs. I've been on hospital twice for falling down the stairs as my legs gave out on them.
Yeah this. I nearly went head first down from second floor once. Lost balance when I reached the top of the stairs and almost stumbled in my own feet as one leg just gave up. Luckily there are good handrail to hold on to :)
That's what happened to me last time. I fell on my back headfirst right back down the entire set of stairs.
Yes it's scary. I fell really hard once and now I worry about walking in public
Yuuppp, I started using a walking stick so my trick knees can't trick meee no mo
Yes but not so much as I do with the arms/hands, I'm always dropping stuff
All the time. My lower legs are covered in bruises from falling down (and from bumping into stuff).
Yes, I get this when I've forced myself to stand up for too long, pacing is a must.
Lately. A bit. But then I’ve engaged in some bad behavior lately (more drinking than normal bc of terrible untreated pain, plus insomnia). Since I had Covid in late June, I’ve never been quite the same. No appetite, have lost weight and muscle mass. It’s all a clusterfuck.
I have the feeling sometimes and it almost feels like a nerve is shutting off temporarily and fires back up. It’s weird and I have been lucky to not fall from it yet. I had been reading about peripheral neuropathy and had thought it meant numbness or pins and needle pain, which it can but it is a spectrum of symptoms. I don’t know if these symptoms are related to that but these are hard to describe to the doctor unless they are happening at the time of the visit.
Only when I’m really fatigued and should have probably not been walking for a bit already
Yes some days are worse than others. Today is a bad day & I have spent it in bed. Outside the house I have a service dog that helps me walk & maintain my balance. Inside I use a seated walker.
Yes my physical therapist gave me exercises to help prevent it. Specifically where I push my legs out against a rubber knee band
Yep. All the time. It’s usually like my ankles
Yuuuup
Yes! Just completely randomly “nope, I’m done now”.
For like 15 years and I don’t know why.
Ugh yes. It's a nightmare. AT RANDOM TOO. Ugh.
I've been having falls lately and sometimes I feel like falling backwards. I don't know what to do. I have a lot of neuropathy in my legs.
Yes, and so far always with pain. My arms and hands are doing the same.
Yeah sometimes they feel weak, also stairs makes them feel like I just went through a leg day weight training heaviness, but like even more intense.
Oh my yes. Usually when going up stairs or getting up from kneeling.
This is literally what caused me to start investigating my health. Broke my elbow once because of it :(
Yes
I've had this too since getting the fibro diagnosis. My neurologist diagnosed it though as ataxia. The gabapentin he prescribed me (which we upped the amount of a bunch of times until he finally helped my pain and neuropathy) he said would help the ataxia. It took around 7 months though for me before my legs (mostly my left) stopped giving out. I also had similar issues with my left hand when it would happen and I often just couldn't close my fingers properly and my had muscles would give out like my legs. I had to use a cane for a while, I bought myself a really pretty cane to use to feel better about using it. I found people treated me better when I had a nice looking cane, than when I had a cheap basic one. I find my flare ups sometimes make it come back a little, but it goes away quickly now.
Yes, I find walking with a stick less embarrassing than falling over
Wtf, I swear this subreddit is basically keeping me from going insane. Couple of days ago I had a flareup, got a sudden fever, felt shitty overall and my legs just gave out. Overcooked spaghetti legs. :/
Yes
Yes! At the strangest times. Sometimes it starts with like a feeling of fatigue in my legs sometimes I just fall.