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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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FM patient without pain/the winds of change

Discussion in 'Pain and Inflammation' started by kerrilyn, Jul 8, 2010.

  1. kerrilyn

    kerrilyn Senior Member

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    Soon after whiplash I developed widespread pain. I hurt from head to toe. I had tender points that when touched made me almost leap in the air, and I was diagnosed with FM fairly quickly.

    I definitely fit the FM criteria but within a couple years I felt like I didn't strictly fit the FM category. I always suspected something else was going on and I fit the CDN ME/CFS criteria too. At times I was clearly dealing more CFS than FM, although I could not convince my GP that it was anything other than FM, so I quit trying. Recently, I've been diagnosed with dysautonomia, and I've learned to not put a lot of weight on labels since so many things overlap.

    The interesting thing is I don't have FM pain now and I haven't for maybe 6 months. I usually do not have it in the spring for about a month but it returns with the humidity. This year it hasn't - knock wood. I don't think I would even be diagnosed with FM now because my tender points are not all that tender (just slightly). If I over do an activity I can get the pain, but it doesn't last as long and it's not as intense. I've not changed anything to account for this, it's just happened. Now, that doesn't mean I'm cured or healthy because I'm still having other forms of pain and a lot more CFS and dysautonomia symptoms instead and I know the FM pain may return at any time.

    But I was wondering how many have noticed this change in their symptoms over the years, like a shift in a cycle? If you have more than one illness, do you notice that only one flares up at a time? Or certain symptoms become more predominant for greater lengths of time while others recede? Why do you think that is? Is the body trying to heal? Or slight changes to the nervous system that account for new (or old) symptoms being front and center? Maybe I've finally learned to pace myself better....but I don't think that is the case.
     
  2. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Southern USA
    I think the body is always trying to heal. Cells turnover, etc. My symptoms have always changed from time to time, better and worse. Now that I finally have two doctors working on my CFS and POTS with supplements I finally see improvements. I have always been on supplements but just not regemented like now.

    Whatever the reason, I am so happy you are feeling better!
     
  3. serenity

    serenity Senior Member

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    i'm in the same shape, i really worked on my pain until it is nearly gone - i have to work out gently daily to keep it at bay but it is nearly non-existant. so now i believe i fit CFS better than FM. i still am much more tired than others & sleep a lot & have to pace myself very much. an activity still puts me down for a couple of days. so while the pain is gone, the fatigue remains.
    i have done a lot of work to get to this place, where i'm feeling much better. but there is work still to be done...
     
  4. sleepy237

    sleepy237 Senior Member

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    Hell
    Sounds very similar to my experience of Fibro and leaning more to CFS symptoms. Many sufferers have the chronic sever pain while mine migrates and comes and goes, symptoms of Fibro more neurological in nature. I agree about the overlapping aspect, almost impossible to separate.
     
  5. Dainty

    Dainty Senior Member

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    I definitely consider my fibro to be distinct, even though there's overlap. During the times my FM is quieter I find myself beginning to question it, but then when I get a flare-up lasting days to weeks or even months then there's no question about it. I think one of the differences, at least from the way I look at it, is the type of pain. I think of Fibro pain as being either unpredictable by moving around, shanging in severity and type etc, and/or worsened by pressure (during a severe flare-up I cannot even lay down, which is bad news for someone mostly bedridden with CFS). I think of CFS pain as being more predictable, constant, and not worsened by pressure. Since I was diagnosed with both CFS and FMS at the same time, I tend to refer all other symptoms besides FM pain to CFS, though that's probably inaccurate. However I firmly bleieve that despite all the overlap they are each distinct....there's no way that weeks of a sudden flare up of extremely crippling pain specific to FMS qualifications can be attributed to CFS.

    I have definitely noticed my FM sometimes corrosponds with the weather, and were I able to track my symptoms and the weather more closely I might be able to work out a better system of predicting my pain, or knowing what my pain is predicting, whichever comes first. :lol: A few years back my area had a very severe windstorm, and several hours before it hit I was literally writhing in agony, and the flare-up continued until the storm passed. I'll get worse pain usually before a heavy rain as well. I've heard ot could be due to the barometric pressure changes, but my few efforts to track it to test the theory have been inconclusive.
     
  6. taniaaust1

    taniaaust1

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    Im very much like Dainty in my thoughts of it. I see my fibro as separate as it's something i now days dont tend to get (thou once or twice in past couple of years, i could feel it wanted to flare when a tender point decided to really play up..but other than that, its gone). The CFS thou remains. (I dont get fibro thou without CFS)

    I got the fibro with the CFS in the first years of my illness and in those years they did blend for me, the fibro was severe and really hurt me just to lay (had to sleep with pillow between my knees as they couldnt touch due to pain, the pressure of my body on bed hurt and even the blankets and sheets hurt). The pain did move about a lot from one place to another. I have read an article one time by a CFS expert which said that fibro is more common towards the start of ones CFS.

    This illness i believe certainly does shift with time and ive gone throu some very distinct changes with it..
    First years in my case were severe fibro, severe weakness and exhaustion with sleeping often over 23hrs per day and fluey symptoms.. fevers, glands up, headaches, very sore throat.. completely bedridden 9mths not able to stand light or sound and couldnt understand language or formulate it at all at times (i was down to doing hand signals at times). Couldnt even stand most of the time, I was too weak.

    My second stage was a remission which came after 5-7 yrs (as cheney talks about a lot of his patients having a remission). My remission was 2-3yrs.

    My third stage was no fibro but severely neurological symptoms.. jerking, spasms, myclonus, i used to be mistaken by nurses as a parkinsons disease patient... and seizure like episodes both absent seizures and also ones which were almost like grand mal seizures but with some awareness maintained, i just lost control of body. (wind blowing on my body could send it into overload and cause me to nealry have a seizure). Severe memory issues (forgot how to use toaster etc), couldnt think, unable to read books etc

    Im now in what I'd call a fourth stage.. where i can read and live a quite a normal life and can avoid CFS symptoms as long as i do less than 3 hrs worth of things on my feet per day (that includes housework and showering etc). So basically my fourth stage is symptom free (thou i still have a bad memory nearly all the time, that's my biggest issue left), thou i cant do much at all. In this stage i now have POTS and also dysregulated BP (so i need to take care not to set off the POTS). It's like the CFS has left some of my body systems damaged.

    (that covers my 13yrs of this illness). Is any of these stages better?? Its hard to say.. im more comfortable in the stage Im in now but really wonder if the damage is permanent, I'd rather be in this stage thou I think even if it is. The other stages were aweful due to different things.
     
  7. taniaaust1

    taniaaust1

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    i thought it swallowed my post so redid it.. only to find then it had posted it, so ive deleted this one
     

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