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diagnosed kind of?
5 Replies
claire17 - April 9

today i went to the doctor and was told i probably have fibro but there was no way of testing or anything and that if i do it knowing what it is wont make anything better i am also being sent to a nurologist because of my crazy muscle spasms anyway my question is should i be worried? if this is a diagnosis and im only 17 will it get progressivly worse? because they have been there for years and have gotten worse over the years but how bad can i excpect it to get? and how comman is it for people with fibro to go to nurologists? any feed back would be great thanks


Vicelise - April 10

I have pretty much the same problem, i am 27 and dont have a definate answer whether i have fibromyalgia or not. I think that a lot of doctors are reluctant to go any further with tests etc because treatment doesn't really change whether you have it or not. For example, you may still have to do your back stretches and take your pain killers/ anti depressants etc. I would like to know once and for all, i'm sick of going to physios or when people ask and saying " i dont know what i have, it might be fibromyalgia?". It would be less stressful on my emotions i think if i knew exactly what i had so i have some idea of what to expect in the future, and so i dont freak out everytime i experience a new symptom. Like you i have just started having muscle spasms in my legs, but i feel afraid to see a specialist because after seeing about 10 -15 of them, they always say "we cant find anything wrong with your back.." and i come out of there feeling more depressed than i did going in. In saying that, i wouldn't want to discourage you from seeing a specialist.. its best to get things checked out - especially at your age.


lmb2 - April 10

well, it is definitely common to be sent to a neurologist just to rule out other possible causes for your symptoms. however, your doctor is wrong about there not being a way to test for it, there are a few different things, after ruling out a few things, that will indicate to a doctor (most likely a rheumatologist) that it is fibro. i get muscle spasms too, so that is a possible symptom of fibro, don't worry too much. Also, fibro is Not a degenerative disease like arthritis and things can be, so it won't get worse in that aspect.... the thing about it is, the pain can change and be in different areas at different times, and there can be triggers that will make your symptoms worse, so in order to keep it under control, stress management, climate control, heating pads, and things like stretching and excercising (but not overdoing it), can help a lot. if you let it immobilize you, your symptoms can get worse. I don't think you should be too worried about it, it's not pleasant, but it can always be worse. My advice is to go through the steps your doc is suggesting, like seeing the neurologist and things to rule a few things out, and when those tests come back fine, don't listen to your doc and do nothing... you can ask him for a referral to a pain specialist or a rheumotologist who can evaluate and hopefully give you a diagnosis, because regardless of what your doctor says... KNOWING what is causing all of your pain and discomfort really truly DOES help. then you can study and learn more about what is going on w/ your body and be proactive in preventing yourself from feeling worse. Don't give up, and if your doctor doesn't want to give you the right referrals, switch doctors! good luck :)


claire17 - April 10

thanks for that.
i have actually been to a rhumotologist who could only tell me that i had inflamed joints but he couldnt tell me why after doing heaps of tests and xrays so i found myself at another dead end also he sugested physio but the exercises the physion asked me to do put so much pain on my joints that i would be in tears so i stopped going ..


JJ1 - April 10

As to yoru question about how bad can you expect to get... I think this is highly variable by individual. Getting a proper diagnosis is the first step in helping. I think the biggest factor affecting my symptoms was the fact I was not getting restful sleep. I would go to bed early every night, sleep through the night, but wake up feeling exhausted. This is a sign of never getting into the deep, REM sleep. I was given Elavil (amytriptyline) which was originally an antidepressant, but at lower doses, it helps your body fall into the REM sleep. Once I started taking Elavil, my symptoms greatly improved. I occasionally have flare ups that seem to be associated with stressful situations, but for the most part, I would say my symptoms improved. Hope this helps.


jacobea - April 11

I am your age and both the rhuematologist and neurologist are pretty sure i have fibro and yet they cannot/have not ruled out a rare form of muscular dystrophy yet because of my family history of it. As for fibro getting worse, it has done with me, in as much as breathing is now painful and climbing stairs and walking far is a struggle, but fibro varies from person to person; ome have it relatively mild, others pretty bad. The best you can do really is take is all the help and advice you can get and go from there :)



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