Some members here have both fibro and CFS, yes? Can you help me think about
this a bit?
I go back to my rheumy next week. Last time I saw him he said that if the bloodwork he ordered didn't show anything, I'd get a dx of fibro. Oh, okay.
I went to see him because I develop tendinitis at the drop of a hat, and my tendinitis in both hands has been constant for over a year. That started after I got Lyme, but all the doctors are like "oh, it can't be lyme anymore!!!" and at this point I don't care anymore what they think.
I can see why the rheumy thinks fibro (since he doesn't believe in post-treatment lyme disease syndrome). I hurt. Everything hurts. I get tendinitis all the time. I guess that's pretty common in fibro.
But, everything hurts because I have tendinitis. The tendinitis is mostly in my hands and feet, with a bit less in my elbows and knees and chest. My palmar and plantar fascia hurt. I also have arthalgia. The pain makes my muscles hurt (I think). When my feet really hurt I just sorta shuffle-walk, and I know that puts more strain on my muscles than walking properly.
So I'm not sure if the "myalgia" of fibromyalgia is the root of my problem.
Then I came across CFS the other day. Like, I knew of it, but I just thought "chronic fatigue" meant being tired all the time. I struggle with fatigue, but not ALL the time. But then I learned that CFS better termed "exertion intolerance" or "post exertion malaise" and that's something I recognize. Over the past year I've had "good days" where I get up and try to get a bunch of stuff done, and then have "bad days" to recover. I've told my husband numerous times this past year "I did too much yesterday, I have to rest." Uh, that's CFS in a nutshell I guess. Ooops.
And looking at this /www.womenshealth.gov/a-z-topics/chronic-fatigue-syndrome
I can check off a lot of things on that list. Low body temp, dizziness when standing, arthalgia, tingling in hands and feet (which is not a nerve problem, already had the s.e.p. for that), etc.
And CFS is known to be triggered by infections like EBV, which I think I had a few months before Lyme.
Sooo.... now I'm really wondering if fibro is the best dx, or if it should be CFS. Do rheumy's dx CFS, or is it some other specialty? But there's people who have both, so maybe I have both? I mean, I do have the constant tendinitis, which doesn't seem to go with CFS so much.
Honestly, I don't care too much. I'm pretty certain I have PTLDS, but that still isn't an actual diagnosis. So I'm happy with any "I hurt, and it's not all in my head" dx right now. But I'd like the dx to be close to the actual me so I don't get offered useless or harmful therapies.
But where is the line between fibro and CFS? Is it mostly just in the post-exertional malaise?