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lee18 posted:
I have every symptom on the list, it's' been that way for years, this will hurt/act up then, something else, all of the items on the list of symptoms. I have yet to be diagnosed, I don't know what to do. I thought it might have been RA because it runs in my family, but when I started really digging for answers, I found out that every symptom I have/had is listed for Fibromyalgia, what should I do. I go to the Veterans Administration, I asked to change Dr's because the Dr. I have now seemed clueless even before I put all the symptoms together for myself. I recently found what turned out to be painful lipomas on my leg, my doctor didn't even explain what it was. It wasn't until I complained, above her head, got to a Dermatologist was this explained to me.
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missist responded:
Hi Lee,
I guess what you need to do is see a Rheumatologist to get a diagnosis--that's what is normally done for fibro--and also for auto immune things like RA--and they will want to rule things like RA themselves just in case--generally specialists are not going to pay too much attention to what you think is wrong--they will note your symptoms and run tests.

That will get you the best chance of proper diagnosis and your first treatment options--which eventually you may want to have adjusted.

As for the lipomas I don't know if those are fibro things--haven't seen that. But if you saw a dermatologist they should tell you how to have them removed. I think they do that in their office-- if not you should ask about it.

In the mean time, hang around here and I'm sure you will get more advice and some commiseration. God bless! it is a hard row to hoe, but please keep trying.
Mary
 
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bette_kaffitz responded:
Hi, Lee,

Mary's right. In a perfect world, you would be diagnosed and treated by a rheumatologist. Unfortunately, there are far too few of them around. In addition, many rheumys don't want to be bothered with fibromyalgia. They would much rather deal with patients with "real" rheumatic illnesses like rheumatoid arthritis.

In the real world, most competent physicians can diagnose and treat fibromyalgia. If your doctor is unwilling or unable to do so, it is time to shop around for another practicioner. (My best fibro doc was a neurologist who understood how our nerve pathways and neurochemicals are so messed up.)

To be fair to your present doctor, it is frustrating to them too, dealing with an illness that changes so much from day to day. Doctors are taught to run tests, make diagnoses, and then treat. Fibro does not fit nicely into this mold.

You and the doctor you ultimately choose are embarking on an uncertain journey through multiple symptoms, using medications that work for some but not for all, and addressing an illness that is baffling to both you and your doctor.

Please be patient. Finding the answers for YOU takes time. On the other hand, do not accept non-treatment or that old "it's all in your head" runaround.

Good luck. Better days. Restful nights.

Bette
 
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franr responded:
Good Evening Lee
The ladies are right the rheumatologist may diagnose you but they don't really like to treat fibro patients.if you can get an app with someone in pain management you will benefit from the treatment and knowledge theses MD's have. They see patients with many different forms of pain. Lipomas are benign fatty tumors that can be removed on an outpatient basis. They are not assicoted with fibro. A dermatologist or a general surgeon can remove them.Don't get too stress out with this.Hope this info helps and keep us posted,....Fran R
 
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booch007 responded:
Good Morning Lee,

As you can see we all have found an avenue for our care that may be different. I too use neurology for my care. When you say derm told you "painfull lipomas" , liomas are small fatty tumors and actually can get large in some patients, but they are not painful. I am suspicious that they are trigger points that you are feeling.

Painful knots in the the muscle that are congested goupings of fibers and in saying that they are being starved of circulation so they get inflamed. Such an ouch. I have this condition. It is a cousin to FM, often placed under the same umbrella.

My neurologist helps me with trigger point injections. I use a book called FM and Chronic Myofascial Pain, by Dr Devin Starlanyl as a guide to my care and in the firs book as an educational source.

Maybe it will help you too. I got it on Amazon.

I found many times I saw a new doctor they would say something to me just to have a diagnosis or a plan or a comment to help me. BUT often they were way off. It wasn't until I met my dear Dr D....she knew exactly what was going on with me. Every symptom had a reason and a site of disrepair. I bought her medical book. "Travelle and Simmons" and read the whole upper body to *get it too*.

Good luck in getting the right physician fit, it is hard for some I saw 9 physicians and cried alot with no answers and knew something was wrong with me. Hoping it is better for you. After getting the doc and dx, then it is finding the meds and plan to get you better than you are now. Make sure you look to the right in resources and look for the toolbox to see what all the fmily here have had to say over the years of what worked for them.

Good luck, Nancy B


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