[sweet tee]

Hello
a lot happened last month, it's been tiresome. It's a good thing the hospital has a revolving door.
I first got a Raynaud's dx in early March, and have been to one at least DR every week since. The only thing confirmed is the Raynaud's.

I began weekly biofeedback therapy for pain management (as well as the GP twice, and been now have an appointment with an allergist). The biofeedback therapy is through the neuropsychiatry dept, do they consider my symptoms to be physical or psychological?
I know stress makes everything worse, but I've been very clear with each of my doctors that the only thing I'm stressed about is not knowing what's going on (and I think that's pretty damn appropriate), that I'm not depressed or anxious beyond normal levels. Last visit, along with an albuterol inhaler, my GP prescribed me allegra because he suspected my symptoms were the result of an allergy. So far he's tested for infections, cancers, various autoimmune (lupus, rheumatoid arth., scleroderma, CREST), allergies, brinchitis, std's, and thyroid problems. When I told him that the allegra did nothing to stop the symptoms (recurring/vanishing rash across my forehead and cheeks, light sensitivity, headaches), he told me to see an allergist.

I can feel the Raynaud's well past my wrists, sometimes to the elbows, stiffness in my hands, an increasingly painful and constant pain and stiffness throughout the back my legs up to the small of my back. It feels like my muscles are shrinking tighter and tighter, like they're getting harder to use.

I stole a peak at the computer screen (my file) and noticed the phrase "Possible CREST Possible Lupus"

Basically, I was hoping to get feedback about this. What do you make of my situation? Any insight would be fantastic
-T

 

[lazylegs]

Biofeedback can be a great tool. My daughter used it to help control migraines. The added benefit was the increase in her body temperature. When done correctly it can help open those constricted blood vessels thus lessening the pain.

I suggest stretching each of your muscle groups periodically during the day to keep them from getting tight. Applying heat or soaking in a warm (not hot) bath can sometimes help also.

Crest can be the primary disease or the secondary disease. You'll have to wait for the testing to be complete to know which it might be. Mine is secondary and has so far been controlled with the lupus medications.

I hope it doesn't take much longer for you to get a diagnosis.

Take care,
Lazylegs

 

[debatat]

Hi, the time before diagnosis is a very stressful time. At least the docs are taking you seriously and trying to rule things out before they confirm your diagnosis. I hope it isn't too much longer now, so they can start you on some treatment. Once you are on some proper treatment you should start to feel better. Maybe you could ask the rheumy about some physio toi help loosen the muscles?

Deb