spasm like these?

[uk2]

Hi All

i was given a dx of fibro back in 2008 but my gp thinks there is something else going on as she feels my sx are so severve.

i get spasms or like contractions of my muscles all over my body my jaw clamps shut and i wake with it so stiff i can hardly open it my tongue is stuck up on the roof of my mouth, my hands are clammped shut in a ball and stay painfull all day, i sweat loads night sweats and get chills and goosebumps on certain areas of my skin,i am sensative to light and noise, i get such bad spasms in my neck my neck pulls down to the side, i am fatiuged and my muscle are weak. I have tried acupuncher,osetopath,chriopractor,hydrotherapy,changed my diet added vitamins.

they are now giving me a ssep and testing for lymes which is odd as i live in the uk.

do you think this all could be down to fibro and not isaac syndrome or lymes does fibro get this bad my gp thinks not at all i hate having a disorder that nobody else believes in you say you have MS and people know whats that like but this they think it does not exsist very down at mo sorry.

[uk2]

Thank you for your reply

it sure is frustrating i have wondered if this pain is TMJ i am due to go to the dentist as i have a lump come up on my jaw under the skin on top of the muscle i feel this is because i clench my jaw at night. I am going to ask my dentist.

sam

[deedee332]

Your mouth pain sounds like TMJ my girlfriend who has FM goes through.  I have FM but no mouth pain.  I hope you find what you need to help you through this.  I am still trying to get the right combination of meds and I am very, very frustrated.

[uk2]

Your so right on the pain thing we do just take the pain everyday as norm way of life others could not even imagine what its like they moan after a hard days work i'd love to work again or if they got a cold but then so did i before i really knew what it was to be ill!! I am glad that you are better then before and maybe this will happen to me.

[Giggles61]

I understand where you are coming from I suffer all that yo do I was really bad until some years ago I went into remission it does happen and since then when it started again after two years it is nowhere as bad now I live in Australia and getting a Doctor here who understands is hard I had a great Doctor only she has retired now. Anyway I have been so bad my Doctor was thinking I had MS. We argued a lot over this as all my ct scans came back with no signs of it. Finally she had to say it was just the way my Fibro was effecting me. My arm goes into spasms and you would think I did not have a bone in there. My whole body will do that if I get over tired and the pain gets really bad.
What we cal bad pain is something anyone without Fibro think is unbearable we take this as our normal pain.

[uk2]

Thanks buriedinfur

It is frustrating have you read the report from the link that plantal put on here it talks of the extremes of fibro i also feel i have carpol tunnel syndrome in my hands and tarsel tunnel syndrome in my feet just to add into the mix lol

take care

[buriedinfur]

I have really weird fibro too and they're in the same boat with wondering. I have periods of time where I go 'ok' ie just the fibro and then I'll have sudden problems with my walking that will last anywhere from a week to a few months. In that I also have massive cramping, urinary incontinence, muscle twitching etc. It will spontaneously resolve on its own.

I also now have trigeminal neuralgia and I have constant nerve pain that I take carbamazapine and gabapentin for. So...it's frustrating eh? But hang in there. Remember no matter what is going on you are still you.

[uk2]

Hi Thanks for reply. My gp feels this cant possibly be causing all my sx but i too am now thinking this can i have a very understanding rheumy who is an expert in fibro but down my end of the country he is the only expert and there is only one other in scotland up the other end of the country i live in the uk of course so two dr in the whole country lol he works closly with the dr in america and what they get treated with we do. I only get to see him once a yr though and my gp has to treat me the rest of the time which is crazy unless you go private with him which i did in the begining but that is not worth it really its £80 a time for thirty mins and any treatment like injections was on top and that was discount as i am on benefits.

Sam

[fibrohurts]

My FM is so severe that some of the docs I have gone to thought I had something else wrong with me. And yet, they have been able to find anything else. I have all of the symptoms you describe and I have been diagnosed with FM by 4 different docs. I rarely have breaks from this ****... I hear people talk of their flares and then having better enough days to be somewhat normal in between. That is not so for me, I almost always feel sick, as if I had a high fever plus the pain.

So in my opinion, you could "just" have FM. Of course, you should be tested for everything under the sun like I was. I almost hoped for them to find something else wrong with me. That way, it could at least be treated. This FM is terrible and not much helps.

I hate that so many of you cant find a doc who is an FM believer. I went thru some of those assholes myself and I thought I was just going to die from the pain and could get no help. Thank God I found decent docs this year.

Good luck. Hope you feel better soon!