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Fibro and autoimmune at the same time?

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Fibromyalgia
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Posted 12/20/2013 2:23 PM (GMT -5)
  Hello everyone. I was diagnosed with Fibro in October of this year. I have some other symptoms that make me suspect an autoimmune issue as well. How on earth do doctors diagnose you with multiple disorders? I had so much trouble getting the Fibro diagnosis and there are still some docs that roll their eyes at me. (I’m a young male and many docs seem to think it’s impossible for me to have Fibro)
Posted 12/20/2013 4:29 PM (GMT -5)
Autoimmune diseases are checked by bloodwork and symptoms. You need to see a rheumatologist.
Posted 12/20/2013 4:31 PM (GMT -5)
If you go to a board certified rheumatologist they will do many test on you. Most of them are blood test. They have crazy blood test that I have never heard of. If your able to go to one, then share your concerns with the Dr. Most of the test they run do have blood values that show abnormalities. Unlike fibro, you can see what is abnormal and get and easier diagnoses.

It's worth going to be tested for other autoimmune disorders.
Posted 12/20/2013 4:50 PM (GMT -5)
The process of getting an autoimmune diagnosis, even with very experianced docs can take some time. There are overlap symptoms with many of the autoimmune connective tissue diseases. Each disease has certain criteria that needs to be met. Blood work can change as symptoms wax and wane. It took years before my diagnosis came together...lots of bloodwork and skin biopsies. It was my third rheumy who finally pieced the puzzle together with the help of a neurologist, hematologist and dermatologist.He then sent me to a teaching hospital to be looked over. Having more than one autoimmune disease makes the process trickier. Down the road other specialists may be needed depending on your symptoms. It all takes time and you learn to be patient.

It is important for you to keep track of your symptoms...even taking pics of mysterious looking lesions, rashes or swelling. I found it is very important to have teamwork relationship with all my docs. I wrote down questions before I went to my appointments and read about tests that would be performed. I made sure that the docs would take time to explain test results and answer my questions. Knowing that I took the time to get involved, a team relationship was built on mutual respect.

In the long run, it is important to get the correct diagnosis so that you can get proper treatment. Hang in there and remember if you don't think your doc is doing a good job for you...there are other docs out there.

Hoping that you do not have to add any diagnoses to your fibro :)

Hugs, Robin
Posted 12/20/2013 5:10 PM (GMT -5)
Thank you everyone. My Rheumatologist did the blood work. I guess I need to trust in his diagnosis.
Posted 12/20/2013 5:22 PM (GMT -5)
Thank You Robin. I have seen several doctors and feel like most of them aren’t really listening. It’s like they get flustered when you have more than 2 or 3 symptoms. I Recently I saw a Neurologist. I’m going for 2 MRI’s next week to check for lesions.

One issue that I run into is that since I am a young male there are many doctors that throw the initial Fibro diagnosis out the window. I’m in a perpetual state of panic because I don’t know if I have FMS which will not cause damage to my body or if I have something else that is progressive.

How do you get a team of doctors to work together? That sounds like it makes more sense.
Posted 12/20/2013 5:35 PM (GMT -5)
Well, if you think about it, a patient with multiple issues is a big concern and a whole lot of work for a doctor. It provides a chance to illustrate how much they do not know!! Not every doctor wants that kind of challenge.

You have to be the cornerstone of the relationship with the doctors. I have a big pocket binder with a pocket for each doctor. I get copies of tests, and keep them there. Any blood work gets filed in the front pocket chronologically, along with a current list of medications and supplements. Also, keep a list of names, phone numbers, fax numbers, and addresses. I moved six months ago, and now with new insurance starting Jan 1, I will be seeing new doctors.

Make sure any testing/bloodwork gets sent to every doctor.
Posted 12/20/2013 5:51 PM (GMT -5)
Thanks. Those are all good ideas. I have a folder that has all my tests in it. I bring it to every appt.
Posted 12/20/2013 6:58 PM (GMT -5)
I am lucky to have a great rheumy. He refers me to the specialists who he has direct knowledge of their expertise. They are either colleagues of his or someone he has met at a conference who is up to date regarding autoimmune issues. Some of these doctors don't practice within the same network but share info and set up testing to coincide with the testing they will perform.

Keeping a binder has been a must for me. All pertinent info goes into it and it is brought to all my appointments. Keeping info organized is a big time saver and helpful to the nursing staff and docs to refresh a memory if needed.

Good luck to you :0

hugs, Robin
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