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Similar Misinformation On CFS & Fibromyalgia (Inflating The Numbers)

Discussion in 'Action Alerts and Advocacy' started by PhoenixDown, Nov 16, 2012.

  1. PhoenixDown

    PhoenixDown Senior Member

    For the benefit of anyone else:

    I'm diagnosed with FM and not CFS/ME. I didn't just "feel worse", I got worse and it NEVER resolved it's self, it's been many years. Until it does, then it counts as permanent. I realise my word alone isn't objective but the vast majority of CFS/ME patients haven't had positive objective "damage" tests either. When I say "it" I'm referring to multiple symptoms which don't necessarily have the same trigger for worsening, but the triggers are repeatable & consistent tests that lead to consistent worsening. For example with my pain symptoms exerting the area enough will indefinitely worsen that area to some extent.

    I'm not "guessing", I've had the test done through Dr.Sarah Myhill, so unless you publicly want to say she's a fraud or explain exactly why the test she uses is different to the one used for ME/CFS in trials (would be news to me) then you'll have to accept that Mitochondrial damage exists in Fibromyalgia.

    I can't link a trial for this, because it was a privately taken but objective test, I wasn't involved in a trial. Are you seriously saying that I don't have this dysfunction because I wasn't involved in a trial? Are clinical tests not valid now?

    I'll consider scanning it in, if anyone else is interested, but I suspect Tania is more interested in having the final say on this one, which is a shame because she's done good work & helped raised awareness in her country.
  2. Shell

    Shell Senior Member

    I was first dx with FMS. My more recent dx of ME on top of it seems to me to have come by accident because so many of my symptoms are MEish in nature. However I tend to believe the underlying dx is hyperadrenergic or combo POTS. There is a lot of newer research in FMS that shows the co-morbidity between Fibro and hyperPOTS is so high that Fibro should be considered a dysautonomia rather than rheumi disorder.
    PhoenixDown Like you I got very very much worse after exercise and have never recovered. I used to push myself to walk because I was told it would make me better. Instead I can barely walk around my own house and need a wheelchair even to get to the end of my road.
    I have seen a couple of people with only the dx of FMS say exercise helps them, but most people I have come across say it makes things far worse with pain and crashes. The pain is unbelievable at times - just can't describe it.

    Do I really have ME as well? How could I know? I've had sweet FA in tests.

    I would like to see all FMS patients receiving high res fMRI and SPECT scans. Getting our magnisium and mito tested and standing Dopermine. Norepinepherine levels need checking.
    Until there are some large studies done we will never really know everything.

    The NHS produce a leaflet on Fibro. My husband read a part of it to me while I was sitting in my wheelchair awaiting being wired up to a 24hr sphig. It clearly stated that FMS will not disable us. I am by no means the only FMS patient who uses a wheelchair and can't get around well.
    Telling lies so boldly simply leaves me not believing a word anyone in the NHS says.

    This is part one. Parts 2 and 3 are on Youtube. I think these vids have been posted on Phoenix before.
    PhoenixDown likes this.
  3. Lotus97

    Lotus97 Senior Member

    United States
    I've also heard of antidepressants being used to treat pain. I can understand why this would give outsiders the "all in your head" impression, but if someone is struggling with pain then ADs can be a godsend. Also, many people with fibromyalgia as well as many of the people here on Phoenix Rising have depression. It's a very real thing. How someone chooses to deal with it is there choice, but treating it can make a world of difference. I do agree in the thinking of treating the root of the problem, but treating the symptoms should not be dismissed because recovery can take a long time for some people and other people haven't even received a proper diagnosis and have no way of treating the cause of their illness.

    Based on my research of Fibromyalgia too much exercise or activity of any kind can be detrimental. I learned a lot about that on this website for CFS/fibro: http://www.cfidsselfhelp.org/library
    Sleep is something else that is very important and needs to be treated somehow. Getting enough sleep can be very beneficial. Although I was eating healthy and taking a lot supplements, the things I believe that helped me the most in my recovery were getting enough sleep (10+ hours) and limiting activities and sources of stress. For me, limiting activitives meant spending most of the day in bed, but this will vary for each individual. Since my interactions with other people were minimal, the main way I reduced sources of stress was to stop watching TV and movies for a period of time. I also stopped reading certain types of fiction novels. Again, these measures might not be necessary everyone.

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