orthostatic hypotension

[Guest guest]

Hello-

I just joined this list. I have a question for anyone who wants to

respond. I was just diagnosed with RA and Sjogren's Syndrome. Before

that, for nine years I was sick, and the diagnosis was Fibromyalgia,

then FMS and CFIDS, then FMS and CFIDS and NMH/OI (neurally mediated

hypotension, or orthostatic intolerance or chronic orthostatic

hypotension or whatever you want to call it, dysautonomia).

I've got a severe problem with the orthostatic hypotension so for

years I've been taking Florinef and Midodrine, which keep my blood

pressure up enough that I'm not nearly fainting all the time. Now

that I found out I was misdiagnosed and I really have two autoimmune

diseases - so that means I technically can't have CFIDS since that

rules out the diagnosis of CFIDS - I have no idea where this

orthostatic hypotension/dysautonomia comes from.

I'm wondering if any of you have had a tilt table test, or the

standing blood pressure test to determine you had a problem with

orthostatic intolerance, and if you have I'd be really interested to

know. My new rheumatologist diagnosed the Sjogren's and the RA, but

he seems to know nothing about the orthostatic hypotension, and I am

trying to figure out what's really going on with my body.

Thanks,

Jen

Sick Chicks and Twisted Sisters, advocacy for women with disabilities:

http://sickchicks.homestead.com (it's not a product; it's just a

website)