Discussion in 'Fibromyalgia Main Forum' started by shari1677, Aug 11, 2009.

  1. shari1677

    shari1677 New Member

    Hi isiselixir - I was reviewing the post you answered regarding CFS. I was diagnosed with FM about 5 or 6 years ago. Almost 2 years ago I had a "relapse" though I dont think it was a relapse of FM, though the development of CFS. I was in bed for 6 weeks. The fatigue was unbelievable, that of which I have never known.

    Since then I have recovered maybe 50%, but I have never been the same. I have bouts of fatigue where I'm so tired I cant even roll over in bed. I also feel weak when I get that tired. It can last anywhere from a day to a week. It is also accompanied by nausea from time to time.

    My doc says FM and CFS are the same, but I dont think so. Would you describe your fatigue as I did above?

    Oh - anyone else on this board with CFS, can you explain how your fatigue is?
  2. isiselixir

    isiselixir New Member

    Yes I would say that my fatigue was similar to that. It is SO hard to describe though. It's easier for me to describe that I cannot exercise, can only walk, because if I get my heart rate up, I get very short of breath, feverish, and exhausted on the spot. You may very well have CFS. In my case the fatigue does not wax and wane, it is always the same. Good luck figuring this out, tell your doc you know of plenty of people who have just CFS and just FM, see if that helps!
  3. jasminetee

    jasminetee Member

    Hi Shari,

    I came down with CFIDS in 1985 and FMS in 2000. They are very similar in some ways, like IBS is common in both, but in many ways they are also very different to me. I've never had so much tendon and bone pain until I developed severe FMS. I also never had burning pain like I do on my skin all the time like I do now. Even sheets make my feet burn.

    CFIDS/ME is more neurocognitive in my experience and from what I've read and seen too. Many of us with CFS have to be in darkened bedrooms because of extreme light sensitivity. We also usually can't handle a lot of color or movement and as you see this board doesn't have any, but go to other Fibro message boards on the Web and you see lots of color and movement. Many of us have difficulty with easy math problems or other cognitive functions and I'm not referring just to brainfog, which is common in both.

    In my experience, the fatigue in CFS is way worse than in Fibro. Also, you see videos of people with ME/CFS who are completely bedridden and can't even socialize or barely can. I don't see that happening with FMS. says: "Although the two illnesses have many symptoms in common, the most prevalent symptom of FM is widespread pain while the primary symptom of CFS is extreme fatigue that does not improve with rest." Also, CFS tends to make people extremely ill with many flu-like symptoms that can be completely debilitating whereas FMS has some of that but doesn't seem to have as much.

    I think it can be hard for doctors to tell the difference between the two illnesses because they share some 30 symptoms as well. However, I find it odd that all doctors aren't aware of the fact that FMS shows up in people with AIDS and other immune-compromised diseases but usually CFS doesn't or at least doesn't seem to.

    I think part of it is that doctors can't do as much exclusive research on both CFS and FMS as we who have them can. There are only so many hours in a day.

    It sounds likely that you came down with Mono to me or something like it 2 years ago and that may have either exacerbated your FMS or you may have developed CFS but you also don't seem to have a lot of the hallmark symptoms of it other than the fatigue. Then again, there appear to be different subgroups of CFS.

    Part of the reason it's so easy for me to see the differences of both illnesses in me is because I developed severe symptoms of both diseases a decade and a half apart. At any rate, my Disability Co. only acknowledges the Fibro even though I did explain about both CFS and FMS to them. The only reason I can see to really differentiate between the two is if they ever come up with a really good treatment for CFS. Otherwise we're all just stuck treating symptoms anyway.

    [This Message was Edited on 08/12/2009]