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Thread: Anyone w/ CFS Overlapping Fibro Dx?

  1. #1
    Distinguished Community Member Beader's Avatar
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    Question Anyone w/ CFS Overlapping Fibro Dx?

    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.
    Sher
    My Life Menu: CFS probably since birth, full flavored since the 80s, with Fibromyalgia, Major Depression with a side order of Anxiety and Agoraphobia sauce, Restless Leg Syndrome with spicy Other Sleep Disorders, 11 Eye Surgeries, a generous helping of Gut Problems

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    Distinguished Community Member Jo6's Avatar
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    hi Sher. I would have to go back thru my records, but I would not be surprised if I find it. I know I suffer, all the little tid bits that sometimes turns unto a diagnosed "blessing". You know the drill, "give it to Mikey, he'll eat anything?" For awhile I w2as making sort of a game of it all. Not really, but it got so pitiful for awhile I couldn't wait until the Pain Dr. wrote another word under diag.

    He got a bit serious when I got down right angry at him for his take on what Fibro. was and how it worked. After giving me a cortisone injection he tells me the brain tricks you unto thinking you are hurting somewhere when you really aren't!?!? When he saw I was damn angry he came back to the room and tried to explain it again. He had in his notes that he THought I understood, but wasn't sure. I was just tired of him explaining to me why he gave me cortisone for imaginary pain!!

    Lumbago, any one? I would like to read some of you stuff about CFS. Maybe post some here? Who knows, it might work, can't hurt, eh? Jo
    Did you ever know that you're my hero and every thing I would like to be I can fly higher than an eagle
    'cause you are the wind beneath my wings

    for my brother Ben

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    Hey Jo,

    Remember that song? Take a walk on the wild side... Thanks for posting more about your predicament. And please go up to Forum Feedback to let Mike know we would like a CFS area of our very own here. I think he wants me to start a poll, but I have no idea how or where. :ambivalence:

    Mike suggested that I start some threads under Rare Neuro Conditions, so I will follow his advice and post CFS-related topics there for now.

    For what it's worth, cortisone injections and "imaginary pain" don't seem to fit together so well in my book either. But there's new research that FMS/CFS pain can make a whole lot of other symptoms worse -- just ask the rats they tested this theory on. They not be happy rats, eh?
    Sher
    My Life Menu: CFS probably since birth, full flavored since the 80s, with Fibromyalgia, Major Depression with a side order of Anxiety and Agoraphobia sauce, Restless Leg Syndrome with spicy Other Sleep Disorders, 11 Eye Surgeries, a generous helping of Gut Problems

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    Distinguished Community Member Jo6's Avatar
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    Sher, I did the poll. It said ther were 6 yes and no, no's. So, how many do they need to consider it for the CFS Forum?
    the more I think of it I feel sure I have it. I sleep about 2 hrs. at night, then wake up and can't get back to sleep. Later I will sleep 2 more hours, same deal. Then the day time it goes the same way. I stay so tired it actually hurts to walk around. I have to stop and "hold up the wall" to finish my treck to bathroom.

    With everything else that is wrong with me its hard to know what causes what, but if you are painfully tired all the time, well thats a good sign. Painful!!

    Then theres the clean sore throat! YEP!! So, when will they decided it is needed?

    take care, Julia

    PS:, do they have Lupus here? On the last boards, before the BIG Crash, there was one. It also was being likened to Fibro. Maybe I need to go back and do some reading to make sure I can say it right.

    take care, Jo
    Did you ever know that you're my hero and every thing I would like to be I can fly higher than an eagle
    'cause you are the wind beneath my wings

    for my brother Ben

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    Hi Jo,

    I guess that Mike and the folks who run BTC will decide about a CFS Forum when they feel like there are enough votes to make it worthwhile.

    I've read some statistics that 1% of Americans have CFS and 2% have FMS. Of course, it's tough to quantify if a sizable percentage of docs don't "believe" in it and therefore don't diagnose it because that will certainly skew the numbers. I'm pretty sure the numbers are somewhat higher in Australia where there's better access to the healthcare system, but I haven't checked recently, and don't know if it's more accepted down under. I do have several friends who "moved up" to RSD after a diagnosis of CFS. Not sure how that works, but it's a scary prospect.

    Funny that believing or not believing in an illness does not make it go away nor improve the symptoms. The medical professionals who have CFS themselves can certainly attest to that one. In fact, that's who I got one of my Maybe This Will Work prescriptions from, filled thru my local doc. Some docs and nurses in Texas were trying Interferon taken orally. I had to go to a special pharmacy that would make up the mix for me. They took the vials of interferon used for cancer patients and diluted it with saline to a certain percentage, then sucked up the correct amount into syringes with no needles on them for accurate dosing. I kept them in the fridge or the freezer, and squirted one under my tongue every day an hour before breakfast. I tried to hold the liquid in my mouth for as long as possible for the maximum sublingual effect. I was doing this during a period of time not long after I had been diagnosed, but maybe ten years after my flare started. I would guess I took this for several years, but I still couldn't tell you if it really had any postive long term effect. Just an example of the lengths I've gone to in trying everything under the sun to help my health improve.
    Sher
    My Life Menu: CFS probably since birth, full flavored since the 80s, with Fibromyalgia, Major Depression with a side order of Anxiety and Agoraphobia sauce, Restless Leg Syndrome with spicy Other Sleep Disorders, 11 Eye Surgeries, a generous helping of Gut Problems

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