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undifferentiated connective tissue disease
9/23 17:21:05

Question
I am a 49 yr old female that was diagnosed with fibromyalgia at the age of 33. I slowly developed other symptoms, arthritis, low grade temps, extreme fatigue, raynauds, tachycardia and high blood pressure. While investigating these symptoms the doctor discovered thyroid cancer. Last year 5/09 I had radioactive iodine treatment after a thyroidectomy. It didn't work and Oct 08 I had 38 lymph nodes removed with only 2 nodes positive. I have developed antibodies to thyroglobulin and that test can no longer be accurate to check for more cancer. Since the radioactive iodine I have been very sick and in so much pain. I actually had a bad reaction to the treatment in the form of hands swelling to a great extreme. My husband had to cut off wedding band. Recently I had a re check at my rheumatologist and these are my test results: High ANA >640, DNA ABS double stranded, positive 10IU/ML, Anti sm RNP antibodies positive, Anti RNP positive, CBC slightly below normal white count, Liver:AST SGOL Low 12.0 He is telling me that I have developed undifferentiated connective tissue disease and that it does sometimes take years to fully present in lab values as in my case. I await a second opinion but am wondering if I can hope to feel better in the future or will I always feel depressed and in pain?

Answer
I'm so sorry you're in pain.  I wish I could foretell where your "flavor" of connective tissue disease is taking you, but every single person out of the millions with them has a different case.  Even my aunt and I have different manifestations of our common disease, scleroderma.  However, that doesn't eliminate hope for you.

First, talk to your doc about being treated for depression.  It's not just a reaction to all that's happening - depression is being recognized more and more as a complication of connective tissue disease.  Antidepressants have been found to make a difference in pain and even in healing.

You can help yourself and your doctor by keeping a log of symptoms and including what you were doing before it started, what helped relieve it (if anything,) the weather, how you were feeling emotionally, blood pressure, etc.  All of this can become more evidence to track down which connective tissue disease you're developing.  Use this same log to write down your questions for your next doctor visit and take it with you.

Work with your doc on pain.  There's a lot you can do - moderate exercise is one, even though right now just getting up from your chair is like climbing a mountain.  Start slowly and keep trying until you find something that's comfortable.  It has taken me years to find the right exercise but I can personally vouch for the help it provides.  Your doc can also prescribe a number of things.  I use Lidocaine patches that stick to the skin for 12 hours as well as a very mild pain medication (I can't take anti-inflammatories due to kidney involvement.) There are a wide variety of pain meds to try for one that helps make you more comfortable.  Also, Lyrica has been approved to fibromyalgia treatment, though I don't have any personal experience with it.

It's very possible that you'll feel better in the future.  In my own experience, in the depths of a "flare," I asked a similar question - "Is this it, will this be as well as I can be from now on?"  The answer was, "No!"  Improvement came slowly, and it took many doctor visits, trying out different meds (even participating in a study for one,) pushing myself to move and exercise when I could and not giving in to despair and impatience.  Friends helped, family helped, a support group helped, and seeing a counselor helped, so surround yourself with people who want to help and support you.  Try not to worry too much about the future - concentrate on the things happening right now and how to make them better.

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