I am undiagnosed (appt with neuro scheduled), and trying to understand what is going on with my body.
One of my symptoms is pain on the bottoms of my feet, especially when I am standing still, though honestly I feel it even when sitting down.
When I am standing still, my legs have also started hurting - it is like I suddenly realize that my muscles are all very tense (especially my calves, and upper thighs/butt muscles), and I have to consciously release them. Which I can do usually, but they tense right back up again. It's exhausting and painful.
Is this spasticity? Does this sound like what anyone has experienced?
Thanks for your help. I have so many questions like this one, lol.
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occasionalyeti
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Welcome! Possibly. Sometimes it feels like there's a crank in my back, turning to tighten every muscle from my butt to the bottoms of my feet, and will sometimes spasm. My lower hamstrings and bottoms of feet will feel like ropes. My arms don't tighten, they just spasm and feel weak, though it's not often. If it is spasticity, gentle stretching three times per day can be a good starting point, and needs to become part of your daily routine. Epsom soaks are helpful, and massage can be very effective. There are also medications if spasticity impairs mobility, sleep, or causes pain.
Feel free to ask questions, or brows older posts for topics you're interested in!
I can totally identify with your symptoms, started with the left leg spasticity, now it’s systemic, plus the spasm became unbearable, tore my body literally apart, doing all different PT’s while in this state, to the point I have now bilateral Acetabulum labrum bilateral tear! Last year I was independent, gym goer, all dif sports activities, today I’m in a wheelchair, disabled!! Since the beginning of last year, it was some journey, initially was hospitalized with the sever systemic spasms after one of the PT’s, then numerous doctors I went through, all view my symptoms as idiopathic, not consistent with multiple brain MRI’s, all different blood tests, including spine fluid … I’m so lost, Baclofen is not helping much, only Valium seems reliefs spasms, helps spasticity, PT’s I’m going to not helping, making worse as a matter of fact, although non of them taking my spasms to consideration during sessions … Neurologist, movement disoder doctors, deny I have MS or any other rNeurological disoder, not sure what to do any more, any advise greatly appreciated !
Another condition you could ask them about is "functional neurological disorder" (FND) - well described as a being a “software” issue of the brain, not the hardware (as in stroke or MS)".
Thank you so much, as a matter of fact I’ve suggested Stiff syndrome to my Neurologist, his response was negative, not actually sure based on what.. by that time he had all my dater, brain MRI, Spine top fluid, numerous blood test, je put me in his Lenox Hill hospital 02/2023 as a matter of fact to establish if a had Parkinson, Dystonia, MS, MSA, Dementia… all was negative - no neurological disoder was found - yet, my symptoms are progressing, now he is saying I have somatic preoccupation… so bizarre
You see, I’m an educator, Anatomy & Physiology, tend to do the extensive research in general, stiff syndrome came across in one of my findings, yet, don’t know what to do with it … lost
I think it's well and truly time to find another neuro.
While yours has certainly run through a whole bunch of no doubt appropriate tests to rule various things in or out I think he's possible fallen back onto some old school closed mind thinking. I had to look up"somatic preoccupation" and one of the alternative terms that came up for it was "conversion disorder" - which is a term which was often used (sometimes still is used) to describe FND in the past until FND started to be recognised as a real problem and not just some sort of neurosis i.e. where patients were told it was "all in your head" - which it sort of was but not in the way that doctors meant. FND does have some treatment options to "retrain" (or should that perhaps be "rewrite") the brain "software", so you have not exhausted all options yet.
If your current neuro has also just dismissed stiff person syndrome without being able to give sound reasons for doing so then that's just another reason to seek a neuro with a broader outlook and more recent reading and training under their belt. Good luck with it all.
I’ve been seeing a few movement disoder doctors my Neurologist referred, four to be exact.. all found no neurological disoder based on their physical examination… as well as other Neurologist referred by mine for the second opinion,
spent a week in the Hospital my Neuro is affiliated with for this matter to run bunch of tests to figure out my condition by him and the team of dif doctors - everyones verdict - my symptoms are not consistent with their findings - thereafter - somatic, just don’t know what to do with it, in a mean while my body is falling apart, can’t walk no more ;((
I've never been clear on what constitutes spasticity, but when I was still working (on my feet all day) I would have days when the bottoms of my feet hurt and burned so badly that I'd cry to myself to sleep. At other times my legs would ache and burn. I rarely deal with either of those anymore (I also don't work!), and when I do I just smear them with Icy-Hot so I can get to sleep. Like Kdali, sometimes my arms will spasm with no warning, but they don't tighten up and rarely hurt.
Icy hot is so great for feet! I had all of those leg issues you mentioned during pregnancy and I thought it was because of pregnancy...but my legs still felt like this after baby. I didn't know for 2 years what it was 🫣 Icy hot helped me with avoiding the sleep cry. I use baclofen at night sometimes when it gets spicy now.
Another thing to remember is to drink plenty of water, at least a liter a day. Lack of fluids will also cause muscle spasms or make them worse. I was diagnosed 19 yrs ago & learned this the hard way. Keep your electrolytes up! If you can stand TBE taste of mustard, a teaspoon of regular mustard will help relieve the spasm. Ice will usually stop the spasm immediately. Hope you get answers soon.
For a long time I wasn't sure if what I experience was spasticity. Then I read this:
Stiffness: This can be thought of as mild spasticity. While not as dramatic as some of the spasms described above, when muscles are slow to relax, it can cause problems walking or using your hands and fingers to perform delicate movements. In some cases, the stiffness may not pose a huge problem. In other cases, it can cause problems with mobility or be painful enough to interfere with your daily life. The symptoms you may experience when your muscles are spasming include:
.* Stiffness
* Difficulty moving the affected area
* A feeling of heaviness
* Tightness
* Pain that ranges from mild to severe
* Cramping
* Achiness
I am on the milder end, but it is real. There is a long list of what can bring it on or make it worse. One of them is tight or rubbing clothing. Good luck!
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