Not Fibromyalgia
 

Ok, I have been diagnosed as having Fibromyalgia by one physician and told by another that he doesn't think so. Most doctors that I have seen have just shrugged their shoulders, told me that they have done all they can do and recommended another doctor.

The symptoms can be best described as feeling like tendinitis. I have this feeling at nearly every connection point, bilaterally. I have been through physical therapy more times than I can count. Blood work shows no inflammation. MRI's, bone scans, CT scans and x-rays show nothing. Neurologist said that it is not neurological. The pain is constant and gets worse with activity and in cold weather. I also have a knot in my back that gets better with the steroids. It has been debilitating at times. The worst is my feet. Because, of course, I can't go without using them on a daily basis. We have tried steroids several times for brief periods. With no affect. Although, about 4 months ago, I convinced my GP to try a higher dose for a longer period of time. Success!! I hadn't been pain free in almost 8 years. The trial period ended and everything came back within a few days of stopping the steroids. He has put me on a maintenance dose until a doctor can figure something out. Obviously, I can't be on prednisone forever.

Medications: Tramadol (100mg x 3), Morphine (30mg x 3), Lyrica (100mg x 3), Zanaflex (2mg x 1)

Duration: 8 years

So, anyone got any ideas. I am going to try a different pool of doctors, starting tomorrow. Going to a larger city, to the VA. I would really like my life back. My kids would like their father back and I am sure my boss would like his superstar back.

I wish there was a specfic test for fibro. But we know there isn't, darn it! It doesn't help that a lot of docs don't think it's really real either. To them I say, TRY to walk a mile in my sandals.

There are over 100 symptoms/side effects, so it does make dx tough. I'd say try to find a pain management doc, or a rheumy. They seem to be the best for understanding and treating the dragon.

I agree so with Aussiemom. I also say see if you can do a different even
maybe stronger drug than tramadol. I am not sure what else there is.

But like I take tylenol with codeine. And I also use gabapentin, instead
of Lyrica.

And zanaflex didn't work well for me. We switched me to a different older
med and its worked lots better.

Donna:grouphug:

What is it?
 

So many illnesses have the same or similar symptoms, and the range of tests is not always comprehensive enough to enable diagnosis.
The experience of the treating doctor is also a factor.
Do you have a list of all of the symptoms that you have experienced, when they occur and what triggers them?
This would help you and the doctor to see a pattern, if there is one.
Include diet too as there may be food or chemical reactions involved.
You really need to take a very wide overview, and while a daunting task, it may well lead you to find success.

Have a look here for a listing of symptoms for a possibly similar illness to give you some idea of what you may need to think about.

www.hfme.org/themesymptomlist.htm

This is my daughter's website.

I do not know what the tests would show for polymyositis, and it might show a lot of inflammation, but I do know that I have been diagnosed with fibro for years. I have the same issues. And pain meds do not help.

Sorry that may be confusing. What I'm trying to say is I have been diagnosed with fibro. Regular pain meds don't work. I too show low inflammation or no inflammation, my pain is in my muscles AND joints. But always seems to be in my muscles when pain is highest. If I raise my arms during a flare, my shoulders are so sore, tired, like I've been working out all day. I have also been diagnosed with MCTD. That has overlap symptoms with polymiositis, RA, lupus, scleroderma. Doctors often miss MCTD. Steroids did help for a while. Sometimes I'm pretty sure my fibro pain might actually be the MCTD. So it might help to look for the poly, or MCTD, or ask a doc if they at least think it is UCTD.

The only thing that has ever taken this pain away is my chinese herbals. They saved my life for 2-3 years. If you cannot find an answer you might want to look into acupuncture.So far it's the best thing I've done.