Hi All,

I wanted to check with the Fibromite contingent to find out if others have gotten a dual diagnosis with CFS. I probably have had CFS since birth [my mother likely had it as well], but it didn't fully flare until the early 80s. AIDS was a new thing then, poorly understood but well covered in the press & on TV, & I considered that might be possibly what I had gotten somehow. The doc included an AIDS test when I had bloodwork done, and it came back with "mixed results -- retest later"! I freaked out & immediately had the other type of test done. Basically it was showing that my immune system was at war.

I did go to an Infectious Disease doc who told me my Epstein-Barr titers were high, but that would pass over & everything would be fine. Yeah, right. I'd already been having symptoms for five plus years, and downing Extra Strength Tylenols like they were M&Ms with no pain relief in sight. Eventually I found an alternative doc who helped with a lot of things, but not the core problem, and then confessed he didn't really "believe" in CFS no matter how much literature I presented to him. Bye bye! :ambivalence:

Finally I found another doc who was open and interested in learning about this new "mystery illness" in 1991. Finally! Acceptance! He ran tests and suggested treatments as they became available, but it was still like putting bandaids on a gaping wound. But he listened and had a Big Teddy Bear personality, so just having an office visit on a bad day was reassuring. Plus he was living proof that I wasn't crazy. :) I joined a large information-oriented tri-state support group, which I foolishly became head of at a later time. I met and counseled a ton of people, so I had millions of sets of symptoms to compare myself to. I went to national researcher/clinician CFS conventions to pick up all the latest theories. I attended cabinet-level commissions on CFS policy in DC and did my best to be an active advocate.

Plus my best friend from college, Susan, had come down with this very suddenly in 1973 after a summer in the Mediterranean, thus ending her doctorate research and promising career. Nobody knew nothin' back then. She said if she hadn't had massively swollen lymph nodes that they would have stuck her in a psych hospital and forgotten about her. Apparently I was the only friend who believed her and found empathy for her situation and limitations. Now by 1983 we had both gotten into the same boat but from very different directions. At least I had a person who understood what I was going thru and we could compare notes. Forever.

As my comprehension of our illness progressed, it seemed like I might have a fair amount of overlap with Fibromyalgia symptoms, altho' not the supposed improvement some patients found with mild to moderate exercise. That part is a real battleground.

Well, that's my story and I'm sticking to it. Thanks for reading along. Please let me know if you have had any kind of similar experience with CFS and Fibro, and then please let the administration of BT know as well -- up top in Forum Feedback. I can't imagine I'm the only PWC [Person With CFS] on here. We all have to learn to speak up and speak out or we'll get lost in the noise.