Hi,
I am new to the fibromyalgia board, but not to fibromyalgia. I was diagnosed with fibromyalgia in 1997. I for a long time thought that it was a non-diagnosis. I really thought that my Dr.s just said that to get me off of their backs. I bugged and bugged them to get an answer to my pain. I had bone scans, was tested for rhuematoid arthritis, and many other conditions. Everything kept coming back, either borderline or negative. I was convinced that, in the small town I lived in at the time, they just thought I was whining.
Eventually the symptoms eased and I ignored those that didn't go away and went on with my life.

I have never been free of pain since then. I have seen many Dr.'s and none of them have come up with anything other than a chronic pain syndrome.

I was in a car accident in 2005 and was diagnosed with Thoracic Outlet Syndrome. All of my symptoms could not be explained by the TOS. I had surgery for the TOS in October of this year. Ever since the surgery I have had all of the pain that I had in 1997 return.

As a result, I thought it was time to learn about fibromyalgia. I need to find out about this condition so that I am able to tell what is from the TOS and what is fibromyalgia. I recognize that fibromyalgia is a real condition now, not a non-diagnosis. So if anyone has any ideas for figuring out what is going on with my body I would be very happy to hear them.

Thankyou for your time, and I wish you all a pain free day.
Trix

Hi Trix and welcome. We all go through the experience you are going through. So you aren't alone on that one. Part of what you said is true, it is a diagnosis of exclusion. Since there are truly no tests, blood or otherwise, that have been successful in diagnosing FM, for now it has to be that way.
As for getting answers to your pain, the only answers you will get is information. There really is no definite "answer" as to why you have FM. It happens for different reasons for everyone. This illness is truly an illness of self-discovery. What meds work for one, may not work for another. What symptoms one person has may be severe and someone may not have it or it isn't an issue at all. In that way it is a real pain in the butt!
My recommendation to you, is like you said, find all the information you can about FM in general. I highly recommend you start with this book Fibromyalgia and Chronic Myofascial Pain: A Survival Manual by Devin Starlanyl. It is what I call the FM Bible and is great in describing bit by bit things that you need to know. Also the best thing to do is what you have already done, reach out to those who have FM and ask questions. Maybe others can identify with what you are feeling and those who don't, offer support.
You aren't alone in this and your frustration is totally understandable. We have all been there.
If you have any questions at all, please feel free to ask.
Again, welcome!

Hi Trix...

I can't add much to what Wendy has already said, except to say that she is exactly right. It takes a lot of time and research to learn your own personal reactions to FMS. For me what worked best was keeping a symptom journal, in which every day I recorded the weather, what I ate, how I slept, etc. The one thing I have heard from the most people with FMS is that finding a way to get good, regular sleep is crucial to managing it. It's certainly the case for me. If I can't sleep, all my fibro symptoms increase.

Good luck with everything!!!

Idealist

(((Trix)))

I remember the moment it set in...this fibro diagnosis.

It is most definitely a very real illness.

I still haven't gotten the book Wendy recommends though I really want to when i have the extra 'funding'. LOL that could take awhile.

I do have a good fibro book though and it helped to read it, and of course all the information the wonderful people here give.

And I agree, sleep is crucial. Definitely, crucial.

I've had reported to me, by various friends, that I am scary to sleep with, LOL. Apparently, I stop breathing many times during the night, and I gasp when I start breathing again! I apparently also snort, snore, groan and make these very strange whaaaa'ing sounds.

A friend I saw in Charleston was the last straw when she told me how frightened she was when she heard me sleep.

So, when I got home I made an appointment with my pdoc and he has referred me to a neurologist for a sleep test. I know other fibo'ers who have had this done and ended up using CPAP? equipment. And they said it's helped with their sleep.

I also take Restoril to help me sleep.

Whatever diseases we have, I think that restoration period our bodies go through called 'sleep' is crucial.

Hugs.

Oh, in my defense, I do not sleep around, LOLOL!

My daughter often sleeps in my bed when she and hubby and baby come to visit. The sleeping arrangement is easier that way.

She has urged me for over a year now to please talk to my doctor about my strange sleeping pattern.

Also, I have been in multiple+ car accidents. Lots of whiplash and injury to my neck/spine/lower back. And then recently I fell and fractured the 2nd bone in my coccyx. Seems if it isn't one thing it's another!