Seeking Relief from Chronic Pain

[Emilyomouse]

I have been having pain and sensory issues for over 1.5 years. I've seen several neuros and had tons of tests. after a year with my neuro I was refered to rheumy. getting into the office and then follow up has been ridiculous, I still haven't got back in. I have consistant low back pain, tightness all over, jaw stiffness and pain, I feel like chewing is difficult sometimes and just doesn't feel like it used to. hand pain( feels like finger joints ache), feet hurt like sob off and on. I used to tingling here and there but lately I have been noticing much more( hot and cold feelings too) . I got them first in my hands and right now my legs and feet are really going off. My feet feel bruised or like i'm tearing the tendons or something when I walk. my upper legs also feel stingy, tingly and tight and fall asleep easily these days. My neuro has said he felt it was fibro. He says his wife has it and he's familiar. Anyway, when my legs and back get like this I feel like my legs are weak too but at the gym or playing hp-scotch with my little girl they hold up, but like i said I feel it and it's annoying to say the least. I also twitch all over which isn't awesome. Some of my symptoms kinda stay consistant like back pain, muscle pain & tightness and twitching. Everything else comes and goes. Stays for a while( days or weeks) and then dies down. I'm wondering if this sounds par with others and if this is just how it goes from here on out.

 

[BlueMan]

It certainly sounds familiar, though not exactly the same as my symptoms. Several people here have a FM diagnosis, and I have a friend who has FM, and your descriptions do resemble that. You don't mention if you have fatigue and trigger points, both of which are considered diagnostic for FM.I assume you've had the usual blood work to rule out thyroid problems and other autoimmune issues, and your neuro exams have not found any signs of weakness, atrophy, or other specific clinical signs. Have you had imaging studies or electrodiagnostic studies done? I'm not suggesting that you need them, but if you've had such tests with no clinically significant findings, that rules out many more possibilities.BFS does get easier to deal with, even fade completely, for some people. For others, myself included at close to 12 years of all this, simply have to learn to live with it.

 

[Emilyomouse]

i've had 3 emgs the last one 4-5 months ago. 3 mri's. autoimmune panels, rheumy panels, lymes tests. nothing shows up. The mouth stuff feeling uncoordinated and the jaw tightness seem to be the most stressful, my leg and back hurt and are annoying but not as stressfull. My whole body twitches. It seems to be about normal with others on here. My arches and hands twitch the most. My thumb pads do little machine gun bursts of a few seconds off and on throughout the day. My anxiety is on auto pilot. I can feel it rev up throughout the day. all this stuff just isn't fun. I've been told by so many( including my neuro who is a top guy here in my city) that after that much testing and time it's nothing sinister but it's hard to swallow when it's in your face so often. it helps when others let you know that they have the same issues.

 

[BlueMan]

Neurologists can be fun, and they have a tough job. Most of what they diagnose can't be cured, and in some cases can only be treated with meds that cause almost as many problems as they solve. A patient with BFS is probably a joy from their perspective.It's hard to live with something that keeps gnawing away at you, but I do get to *live* with it. There are many folks here who can share all manner of useful techniques for reducing anxiety, accepting that BFS is benign and livable, and getting on with life despite a not-entirely-cooperative peripheral nervous system (or immune system, central nervous system, muscles, etc.) and little if any help from modern medicine.Unfortunately when they check me, they find things. I produce unusual results, from the cyst on my lower spine to the low platelet count and the fluctuating thyroid levels, along with degenerative disc changes in my cervical and lumbar spine, plus tinnitus, anosmia, diplopia, gait abnormality, and all the symptoms/signs of BFS (or CFS, PNH, or neuromyotonia, if you prefer). So I understand when you say this can be tough to live with. But the alternatives are all worse, so I live with it.