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Do you ever wonder about your diagnosis?
5 Replies
cheri21157 - June 23

Do you ever wonder if you really have fibromyalgia or are your drs. really missing what you really have and they just give you this diagnosis. I wonder this all the time. After reading a lot of your posts I really wonder if I have fibro because I am not in as much pain as a lot of you. I do hurt but mainly in my arms especially my left arm. My shoulder hurts and my hands hurt a lot almost if I have arthritis and my knees hurt when walking up and down stairs and I do have extreme fatigue. I have seen a rheumy dr and she has said I have fibro and not arthritis and prescribe lyrica. i do not like the lyrica, it makes my hands shake, my eyes get funny, my head gets woozy, I am more tired after I take it and have many more side effects. Sometimes I just wonder if all the different medications I have been prescribe could be causing a lot of my problems. Is there any one else that also feels this way?

 

TEA - June 23

I have felt the same way soooo many times over the years, because I don't always experience the extreme pain some people do, but I have a millon other symtoms and after having tests done for pretty much everything and finding a doctor who actually knows more about fibro than I do I'm finally convienced.I don't take any meds due to severe reactions or they just make me feel weird. I try really hard to eat well and exercise regularly even if im tired I try to do something cause if I sit still too long things just get worse and Its twice as hard to get back on track.Fibro is the crazy illness and its sometimes makes me feel like im crazy and frustrated,it takes time but your've just got to find something that works for you. Good Luck.

 

Fantod - June 23

cheri21157 - A diagnosis of Fibromyalgia (FMS)is not a catch all for anything that a doctor can not figure out. FMS is recognised by the World Health Organization, the Centers for Disease Control and the National Arthitis Foundation.

Everyone's experience with FMS is completely different. Symptoms and pain levels vary widely which makes this syndrome very difficult to treat.
On a day to day basis, everyone's symptoms flutuate making it very difficult to plan daily activities.

Has your left shoulder been evalutated by an orthopedic specialist? You may have bursitis which is common among people with FMS. I have it in both hios and shoulders. It is very peristent and painful.

If Lyrica does not agree with you, have you tried Cymbalata or Savella? Perhaps changing medication would alleviate some of your discomfort.

If the rheumotologist told you that you have FMS than chances are extremely good your diagnosis is correct. Take some time to read the information contained in the blue boxes on the lefthand side of this page. There is a lot of good information on this website. Knowledge is power. Take care.

 

julissarodriguez - June 25

I feel this way many times, but the more time passes, and the more i accept i have this disease, the less i feel this way. I think alot of the way you feel could be denial, and its understandable. Who wants a disease who almost no one understands, and fewer accept is real? I experience different symptoms on different levels on different days, and i think most of us Fibros do. My pain can be a 10 on one day, then be a tolerable 4 on the following day. Its not easy accepting that one has Fibro, especially when told its incurable. Like Fabulous Fantod says, read more , knowledge is power, the more you know about this disease and accept it, the easier it is to live with it....

Julissa

 

kvc33 - June 25

I wonder about it myself. I have CFS as my primary diagnosis but if I look up adrenal exhaustion I can tick off every one of the symptoms. My friend who was told she had fibro for five years has now been told that its multiple sclerosis (MS). One woman I know actually had brain cancer and it wasn't discovered until 3 months before she died. Get off the lyrica, it's not helping you. See another doctor for a second opinon if you think she is wrong. My fibro is mild, it comes in all shapes and sizes!

 

powderblue - June 28

I did used to wonder if I had fibromyalgia as mine started as occupational overuse. I pretty much went into remission for a few years with very mild symptoms. I guess I wanted to blame it on OOS and didn't like the stigma associated with fibromyalgia and didn't really see myself as a person with true fibromyaglia. Because of my lack of knowledge and not expecting that it would come back I pushed myself into lots of exercise (half-marathon, was training for a triathlon, shiftwork, continued to subject myself to stress in my life and it came back. I even went to a rhemutologist second time round just to confirm it was FMS. I still managed to work (with some difficulty) second time around but have left my job because of the shiftwork and am retraining as I realise that FMS is going to be with me long term. I consider mine mild compared to how it was 12 years ago and how it is for some sufferers. Yes it's often nice to think that it could be another disease that doctors knew a lot more about and how to treat easily. Because you can have so many symptoms with fibromyalgia and some people can have another disease at the same time as fibromyalgia it may pay to find out a bit more like Fantod suggested.

 

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