Pain and twitching, neuropathy?

[hojo]

I've been having widespread pain and twitching for over a year now. I've been to 2 neurologists, 2 rheumatologists, 6 GPs, an allergist, and hired a medical investigator. No one has ever heard of "pain and twitching" in combination before. Recently I've been given an explanation.

I'm told it may be a "subclinical immunological neuropathy". My rheumatologist suspects that its an autoimmune disorder where my body is attacking small nerve fibers. Not sure what caused it but I am guessing it was from an allergic reaction to Zyrtec, an allergy medicine. I am told bacterial infections, virus, or toxins can cause it also.

My symptoms used to be constant for about 6-8 months (it was horrible), they have become cyclical now. I feel fairly decent for a week or two and then have pain and twitching for a week or two thereafter.

Has anyone experienced anything like this before??

[Jake_the_twitch]

Count me in. Along with the twitching I experience muscle and joint pain. I seem to have 5 day cycles.

[hojo]

How long has this been going on for you? Have you shown any improvement over time?

[michelle]

Hi hojo. I am from the Columbus area too. We just moved from Columbus to Marsyville.

Anyways, I have pain and twitching too. I've only been twitching since the beginning of June, but the pain got worse when I started twitching. Before the twitching I had mostly back, neck and shoulder pain. Now I have had widespread pain. For instance, for two days my left knee killed me for no apparent reason and then it just dissapeared. I also have experienced joint pain in my knees and hips. Another weird symptom that came along with these twitches was the "exercise intolerance" except I don't even have to exercise to get the pain. I recently went shopping for a few hours and my leg muscles killed me for the next 2 days. I NEVER had anything like this before the twitches. It's a strange thing. Mine's not cyclical thought, the twitching is 24/7, but the pain comes and goes. I am seeing a rheumatoligist in October.

Michelle

[Jake_the_twitch]

I should clarify that my Twitching is 24/7 as well but I have good days(less twitching) and bad days. The pains I get could be the excerise intolerance other talk about. I am physically active playing hockey, running plus numerous house repairs. I have had the pain ever since the twitching started.

[Arron]

See? I always said this twitching is a "pain"... ha-ha!

[SusanSid]

Sounds so familiar! I have days that are better than others, sometimes with the pain and other times without. I don't like the pain, I especially get it in my feet and hands, but it can move around to the point my muscles just hurt to touch....then it's gone. Sometimes I think I'm nuts with these symptoms, but I know I'm not!!
I twitch a lot. I have had times where I cannot find any place twitching, but that's rare. I find water intake and sleep are important.
Thanks all of you for sharing.

[Nole]

SusanSid
Have you ever been looked at for rhematoid arthritis. My mother has it and has had the pain you are describing where it hurts to even touch. It started slowly with her, with good days and bad, but she did not have twitches. I have the twitches, seem to be getting alot better (almost non-existant for the past few days)but, no pain or weakness just benign. Hope you feel better.

[javens]

Hi,
I get pain after twitching as well. The muscles that twitch feel sore immediately follwing the twitching. Recently I've had alot of twitching on the front of my thighs....then of course, my thighs get sore. I've been to two neurologists(one at Texas Neurology/Baylor) and one at Presbiterian hospital in Dallas), had an EMG, had MRI of Brain, c-spine, t-spine and L-spine- all totally normal. I've had tons of blood work done..all normal.
My Neuro says that It's benign...definitely not ALS or MS. He specializes with ALS patients and said that if I had ALS and came in twitching, I would be very weak. When I asked him why I experience pain after twitching he was'nt too sure...maybe cramping or a related fibromyalgia type syndrome. I'd love to know if anyone else has info on pain and twitches.

[tlotoxl]

I have pain and twitching but i never figured they were connected; my twitching started 2 years ago (with the exception of tongue twitches since puberty, ~12 years ago) but I've had joint and muscle pains come and go since I was a kid. Right now my right knee is hurting me. I figure it's because I walked badly yesterday or something like that, but who knows? I also get neuralgia sometimes - intense pain in/behind my forehead above my eyes - but I've had MRIs to rule out, as much as one can, the nastiest possibilities for that.

I grew up in the country (where I should probably still be living - I don't handle pollution well) and out there my family doctor always used to tell us that almost every single ache and pain will go away of its own accord. Of course that isn't universally true and it's good to be vigilant, but I try to keep his advice in mind when I get these pains.

[Jen]

Count me in on this one. I can especially relate to what Michelle wrote. My GP tested me for rheumatoid arthritis, but all was normal. I agree with SusanSid, water intake and sleep make a big difference in how I am feeling. I have a friend with Fibro, and she says her pain hurts to the point that she does not want to be touched by anyone.

[Craig]

Count me in on this one as well. I have had plenty of joint and muscle pain along with the twitching. Mine seems like it goes in cycles, but I get it most frequently in my thighs, hips, feet, and neck. I also have places that feel tender if I press on them, but they too seem to come and go. I used to love the feeling of being sore after a good workout, but now it seems like thats how I feel all of the time...without the workout.

[janet]

I have been through it all, tons of docs including rheumies and tests of all kinds- all normal tests except I had some iritis and rashes suggesting some autoimmune problems going on even though I had a normal ana and sed rate. My BSF started right after an operation and I had horrible nerve pain in my feet and hands along with transit muscle pain. The pain has calmed down and now I have the usual symptoms of BSF that everyone talks about. Muscle cramps and pain are nothing compared to neuralgia-I hope to God that it will never return. I am trying to slowly go off my neurotin now.

[DogBone]

I am certainly in on this one. I never had this pain before my twitches started. Mine is mostly lower legs, feet and arms for the pain and twitches -- well you name the place. Good thing about pain is that it is not typical of ALS. So I guess we can count ourselves lucky in that regard. I have had many people say that BFS and fibromyalgia are closely linked and I think the pain may be related. Hang in there everyone.

[Glenn]

I wonder why you think it was an allergic reaction to Zyrtec. Was this suggested by the doctor? I have seen a mention of this before but no specific data.

A Neurologist at USC told me a few years back that a number of patients like me had received immune therapy for allergies. He hadn't yet documented the correlation. Had you been treated for allergies?