Feel Good one day & like Heck the next

Discussion in 'Fibromyalgia Main Forum' started by Nikki, Nov 2, 2002.

  1. Nikki

    Nikki Member

    Does anyone else feel this way? Yesterday was pretty good (translation: I didn't think about my pain all day). Today, every inch of my body aches.

    I haven't actually had a dx of FMS, but my ortho and PCP think I have it, but, of course, they don't have a clue about FMS. I'm having difficulty just getting an appt w/Rhuemy. Was scheduled to go to Rhuemy this past Thurs (waited a long time for this appt) . . . my PCP's nurse set it up. . . on Wed I got a call informing me my appt was w/dr who treats diabetis (which I don't have . . . thank goodnes). Nx available appt w/R is after 1st of the yr. The Bad News: Found out that Rhuemys in my town aren't taking anymore Fibro patients . . . can't figure out why. The Good News: I started researching to find out if some other drs besides Rhs specialize in FMS, and I found a female internist . . . got appt for 11/19. This board seems to be my only source @ present.
  2. Nikki

    Nikki Member

    Does anyone else feel this way? Yesterday was pretty good (translation: I didn't think about my pain all day). Today, every inch of my body aches.

    I haven't actually had a dx of FMS, but my ortho and PCP think I have it, but, of course, they don't have a clue about FMS. I'm having difficulty just getting an appt w/Rhuemy. Was scheduled to go to Rhuemy this past Thurs (waited a long time for this appt) . . . my PCP's nurse set it up. . . on Wed I got a call informing me my appt was w/dr who treats diabetis (which I don't have . . . thank goodnes). Nx available appt w/R is after 1st of the yr. The Bad News: Found out that Rhuemys in my town aren't taking anymore Fibro patients . . . can't figure out why. The Good News: I started researching to find out if some other drs besides Rhs specialize in FMS, and I found a female internist . . . got appt for 11/19. This board seems to be my only source @ present.
  3. JP

    JP New Member

    Hello Nikki,

    Glad to hear you have an appointment with a specialist soon. On some level, it helps me to have a name for this stuff. I was diagnoised with FM on my first appointment with a Rheumatologist this July. I actually went to this doctor because of my positive ANA labs, SED rates and arthritis. I got more than I bargined for.

    Hang in there,
    Jan
  4. Cactuslil

    Cactuslil New Member

    accepting the diag. and doing what you can to mitigate what losses can occur if you ignore doing whatever is available to alleviate your symptoms.

    I was one of the doubting-Thomas' who had to be "shown" how this invisible illness could possibly exist so I continue to go downhill like a snowball from Hell!

    Many mistakes were made by both me and my doc such as taking steroids prior to adequate blood work was done; now I will likely forever have to take Pred. use into account on any blood testing done! I now have it from a high of 60 to 5mg. and that was against all odds but my steadfast knowledge that it had to be done; atleast for a while. For six years I was on Pred and the last year I developed Cushings Syndrome. It is slowly reversing, thankfully.

    I have quite a story but thankfuly now I have a good doc; he reads and appreciates my abstracts that I deliver to him. He is a general practitioner kind enough to take me i.e. I am on SSI and therefore a disability has been established so he knows I will require more care than his practice normally handles; however that is it where I live in Texas. He and I work together; as do the consults he sends me to when a specific procedure is called for...then we get back together and decide what to do.

    As for internists....my personality and most internists' personalities don't G-haul. Neurologists and I get alone and my experience w/Rheumi's has thusfar been good but they price me out. However my basic treatment plan from 3 years back drafted by a rheumi is still my basic regimine give and take what new ailments have come along.

    Sounds like both of you are on the right track to wellness. Love CactusLil'
  5. Cactuslil

    Cactuslil New Member

    When I have a good day and try for some normalcy, I usually pay the next day commensuate with the energy, mental or physical exerted. I have gotten much better this year at balancing energy out-exhaustion in, although when you are having a great time, for once, it is hard to lie it down!

    A good friend of mine who has this is also a musician, like myself but she was amateur, by choice....now instead of playing at a local weekly bluegrass fest for three hours, she for an hour instead and then content herself to watch. CactusLil'
  6. teach6

    teach6 New Member

    I tired going to a rheumy. He looked at me, sitting with my knees to my chest so I could breathe and said, with a smile on his face, "IF you have FM there's not much I can do, and I don't believe in CFS." This guy had been recommended by others with FM and there was lots he could have done.

    My primary dx is CFS and my Neurally Mediated Hypotension from autonomic system dysfunction was what was causing me to sit with my knees to my chest to be able to breathe. I also have a dx of FM. So much for that!

    I now see an internist who specializes in CFS and FM. He took one look at me and knew what I had, but of course ran the required ruling out tests, to be sure. He immediately began to try to treat my NMH and called my case a "complex" one, which is why the rheumy didn't want to be bothered. I hadn't seen him originally because he is out of my insurance network. But he's definitely worth the extra bucks I have to pay (30% instead of $10 per visit).

    So seeing an internist instead of a rheumy doesn't have to be a bad thing. It was a stroke of luck for me!

    Barbara
  7. ssMarilyn

    ssMarilyn New Member

    I used to go through this all the time, and that's why I could never make any plans for the following day because I knew I couldn't guarantee I'd be able to follow through.

    Marilyn :)
  8. Nikki

    Nikki Member

    when I got out of bed this a.m., I thought yesterday was a turning point. I think I'll do better once I know for sure what I have. I felt this same way before I was dx'd with MVP . . . before my dx, I thought I was going crazy. My PCP at the time told me there was absolutely nothing he could do. That was my last visit with him.

    Thanks so much for all your replys...............Nikki