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Jun 02, 2009 - 2 comments

Rheumy was uninformed about more serious complications of Sjogren's, didn't understand the neuropathy at all, and couldn't see how constantly dislocating joints might lead to constant joint pain.  My symptoms all fit Sjogren's, Ehlers-Danlos, and the Neuropathy perfectly, but apparently that wasn't good enough for her.  She wants to diagnose me with Fibromyalgia even though the symptoms don't fit (no muscle pain, it's only in joints and gets worse when I dislocate; fatigue increases in proportion to my salivary glands swelling)  Oh, and she insisited that I must be anxious or depressed because EVERYONE is.  Not going back there!  However, I am starting Plaquenil, and the neurologist said I have an excellent chance of regenerating nerves now that I'm starting treatment.  Also, I found out people can actually live with no small fiber nerves, and since my autonomic symptoms are already pretty severe, I probably won't get much worse even if the Plaquenil doesn't help.  Fabulous news!  She thinks I might get back to having a "normal" healthy person life.  Once I sleep off the trip and hours at the Clinic, I know I'm going to start thinking of things I might be able to do again.  Heehee!  (I know, I know, it'll take time and PT and I won't be the same as before, blah blah blah, but still, Heehee!)

Oh, yeah, I meant to point out that I have nothing against Fibromyalgia diagnoses.  I know a lot of people suffer terribly from it.  I just think that if doctors want it to be taken seriously, it can't be applied willy-nilly.  If there are existing problems not being treated that are causing non-fibro-like symptoms, they should be treated.  Docs shouldn't just slap another inappropriate label on.

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by sting123456, Jun 02, 2009
Wow,.....that is great news!!

Good for you!!!!  

984010 tn?1255796138
by RockinRuth, Oct 06, 2009
LOL,  I went and seen the Rheumy for the first time because I was diagonsed with Sjogren's Syndrome.  She said I look good and there were no need for furter testing.  She pushed on me in several places which about three sore spots were in my back in one in my right elbow and she diagonosed me with Fibro.  I feel she gave me a label that doesn't belong to me all because I look great.  She never answered my question if Sjogren's was primary or secondary.  Docs need help.

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