Fibromyalgia Support Group

so now the doc says I dont have fibro...I am so confused..I have been having alot of electrical sensations on my legs with alot of muscles bubbling lol ...my doctor says she thinks it could be a neurological disease...just lovely right...and my feet cramp and hurt all the time and my calves hurt ug...sometimes my hands hurt too...so I was wondering if anyone had these symptoms with fibro or if anyone might have a clue as to what it is...I am a lot freaked out about neuro diseases...some are horrible...

Are you seeing a Rheumatologist?

those symptoms could go with many different diseases/disorders. While I do get all of them as well. The best thing to do is check for other explanations like the doc is saying. Fibro is a diagnoses of exclusion, meaning once they prove everything else wrong/not the case then they can diagnose with fibro.

Have you been tested/examined for the tender points of fibro? If so what were the results? There are if I remember right 18 and diagnosticlly one must present with 11 or more positive tender points to recieve a dx of fibro.

While many of the neroulogical disorders are horrible many of them are also treatable and managable, many being better understood and researched better than fibro.

I'm guessing your next step is seeing a neurologist(if you haven't) and good luck!

sadly fibro can mimic alot of diffrent problems,yes I have those problems but I also have neuropathy in my neck/arm and back/legs..

dont freak out yet I know its hard not to..due you know when they will set you up for test?

I know the doctor is trying but i really want her to send me to a specialist which she hasnt yet and I am not sure y she is hesitant because she is kind of lost I think the best bet for me is to just ask her to. All she is doing is throwing meds on me and saying it could be this or that...i am lost and upset and panicky which is not good. I did have a epesodes where all my points flared up and seemed to be swollen little knots everywhere. I even had a huge know on my side right under my ribs that hurt like crazy..that finally went away..now i am just stuck with twitches foot and calve pain in both legs and hand pain I was checked twice for diebetes and was fine. blood work and thyroid all fine ..I am taking some extra d vits not sure if she checked them but i heard it coulndt hurt because i live in washington state and we hardly get any sun...i also have this annoying feeling in my throat like its plugged up or something blah almostr like heartburn without the burn and a strange ache not sure what thats about i am going to ask my doc on her thoughts...she did say at one time she thought i had fibro and even but me on meds for it but she has not sent me to a rhuemy or neuro doc yet hopefully she will soon..thnks for the replies

shellie,

Go to a Rheumatologist!!!!!!!

As soon as you can!!!

I am suggesting this to help you!!!

i agree go see a rheumatologist. It could be many things, from an arthritis and autoimmune to fibro to neurological. I think it is definately time to see a rheumi. If the rheumi isn't successful in figuring it out then they can plan the next course of action.

Like amazing said the sooner the better, mainly for you quality of life, plus the sooner you start testing the better.

Has she done any bloodwork to rule out autoimmune? Like an ANA or an RA factor test? Even my primary did this in the beginning and then my rheumi ran them again to be sure.

At any rate the sooner you get in to see a specialist the sooner you'll find some answers.

Good luck and feel better.

she has done bloodwork to rule out lupus and RA so that all came back neg. so hopefully my next appiontment i can get that referral to a rhuemy doc thnks everyone for the feedback blah..i feel so blah...i am sure all of you have been were i am at right now..even as I type my hands are going to sleep lol..when all of this started all I had was a terrible back ache in my thoraic spine area mostly burning and I couldnt put any pressure on it..then the sternum pain got so bad the doc did a chest xray to make sure there was no mass..and there was no immflamation in my rib cartlidge either it was all clear..then i got to were it felt like i was being sqeezed or hugged really tight..finally that is gone ...then wheni thought it was all going away i started getting head tics and vabrations in my whole body I could feel them running from my toes all the way up to my head and it would just start back at my toes and do it again..at that time i was getting really bad headaches too..I remember i was dreaming we were having a earthquake and i woke up turned to my husband and said did you feel that...thats when i realized it was me in a all out rumble fit..took about five minutes and it stopped boy that was scary..so i am left with a strange feeling in my upper chest that goes threw to the back its like a electric feeling kind of like when i was a kid and my big brother told me to put a battery on my tonge eek and feet and hand pain...and vibrations oh and diareaha every other day..so bad i am scared to go anywhere..so yah that is y the doc thinks it might not be fibro..i could of had a fibro flare which struck up something dormant who knows ...lol certainly not me...

Good luck in your search of figuring out what is going on, I know it has to be extremely frustrating and I'm so very sorry for that. We have had several members go through similar situations and they ended up going with 2 out of 3 drs dxs. Its a difficult dx since there is no diagnostic testing only exemptioms which you are already ahead of the game on that one. Like Broken said it could be Neuropathy so try not to stress too much over it until you are given something concrete to look into, the stress alone will drive you bonkers. Neuropathy I also have and it's nothing simple to suffer from, it really stinks to be kind with words but it's also not as serious. The best thing is to take it one step at a time and know you have friends here no matter what. Also even if you have something else going on you can still have Fibro as a secondary or primary (nuisance) mine I have never been able to get rid of no matter how hard I've tried! Each new dx I would say ok so no Fibro they say umm no that's not the case, it just exacerbates it. You def as the others said will want to ask for a specialist, Neuro and Rheumy to check you out. My thoughts, prayers & warmest wishes are with you my friend. Hugs, Stacey

Shellie,

I agree, go to a rheumy, ask her to make you an appointment and get you pre autherized...let the Rheumy figure out what you have or send you to a neuro guy to check your nerves and see what they are doing....

the bubbeling....do you see the musles undulating under the skin?

hugs and prayers that you get to someone soon, really soon!!!!

Natty