Symptoms with movement - Fibromyalgia?

[Judy]

Thanks so much for this forum. Its a godsend for people who need help.

I currently have symptoms of pain, numbness and tingling in many areas of my body including face, abdomin (abdomen), hands, arms, legs, buttocks. Lower back aches a lot. The lower back ache, front of leg pain/sensation (particularly thigh) and abdomin (abdomen) pain is new. I have not seen Dr. about that.

I have RA. Many tests, blood normal except RF positive, ANA neg. though. MRI brain -normal, MRI = c-spine c5/6 herniation supposed not touching anything important, c-spine x-rays - mild atlantoaxial instability, lumbar - l5/s1 surgery good results - (pain numbness in leg is different leg), MRA - normal, evoke potentials normal, EMG upper -for carpul tunnel - normal.

I sleep great. If I lay down on my back/no pillow and don't move I don't have sensations.

When I make the slightest movement, I get a sensation somewhere - could be almost anywhere.

I feel like this is structural because it is related to movement, but all the tests seem to say no. Drs. say the don't know.

Do you think it seems like fibromyalgia?
If not, do you have any other ideas on what we should look for and how?

Drs. stumped. PCP says to prepare myself emotionally for never figuring it out. I don't give up on myself easily.

Thank you for your reply.

[CCF Neuro[P] MD, RPS]

Dear Judy:

Sorry to hear about your symptoms and arthritis.  The diagnosis of fibromyalgia is clinical and based on diffuse muscluoskeletal pain, which is often worse at night.  The diffuse tenderness is most prominent in the neck and shoulders, along the spine and in knees and upon deep palpation at what are known as trigger points.  Your symptoms seem to be too widely spread and muscle twitching is evident which is really not a part of fibro.  It is difficult to tell you what the movement induced twitching might be from.  It can be anything from a sleep disorder like restless leg to benign fasciculations.  I would suggest that you might want to see a neurologist and get a full going over.  Alot of your symptoms might be related to your arthritis but your physician would be the one to know that for sure.  I am really sorry that I can't help you much.

Sincerely,

CCF Neuro MD

[stephanie]

Judy,
     I have gone through some of the same symptons as yourself.  I have been diagnosed w/ fibro. and a form of artheritis caused by Crohn's disease (they really haven't given it a specific name).  They are currently looking at the possibility of some type of liver damage due to meds. due to the increase of muscle weakness and spasms, they are also considering CFS.  However it appears as if you have already undergone blood tests to show anything with the liver. With my symptoms getting worse new ones popping up they still believe I have the Fibro. but in combination with something else (CFS or something). You may have the Fibro. if you have most of the trigger points and symptoms for it along with another problem that could easily be treated.  I don't know if I've been of any help to you but maybe it's something you can discuss with your doctor.  Good luck to you!

[Judy - Follow-up question]

I tried another angle. Fibromyalgia is frequently missed.

I don't really think I have this. The Drs. answer is unclear. He focused in on twitching - which I do not have. He must have read the word sensation as twitching. By sensation I mean, pain, numbness, tingling, burning, pin pricks, stuff like that. Stuff that you feel.

By the way, I also have a yucky taste in my mouth to go along with the facial numbness. How does your mouth taste?? I sort of have to laugh with that question. I bet you don't have too many total strangers asking you "how does your mouth taste". OH well. Hope I'm not getting too personal.

[Patti Q]

I have been diagnosed with Chronic Fatigue Syndrome/Fibromyalgia for 15 years.  What would you specifically like to know about it as a person who has experienced it?  I use to run the support group for our area before returning to work and school.

[Sherry]

I have fibromyalgia. Sometimes it is very discouraging, as there is always something that hurts or is bothering you.  However, we have to put it in perspective.  It does get better with exercise.  
Sometimes people who don't have it have no clue; sometimes they feel badly about it.  Sometimes it is easy to become depressed about having a chronic disease like this, particularly one that not all drs. believe exists.  However, more and more of them do believe in it now, so you can feel more justified.  It is real.  If you have it, just try to go on and do whatever you want to do.  Some days I can't do that.  However, last August I rode 50 miles in the Hottern' Hell bike ride with the disease.  You still can do things.  Don't give up.  Antidepressants help some, as go good supportive friends and family. I hope you have a good support system as it mcn mmake things much better.
Good luck, and hang in there.  --Sherry M--