CFSers, do you have other main symptoms other than fatigue?

Discussion in 'Fibromyalgia Main Forum' started by confetti11, Apr 27, 2007.

  1. confetti11

    confetti11 Member

    Hello, I read a lot about debilitating fatigue (and for FMers, pain) and it being the reason why people are more-or-less housebound. But do any of you have other even more debilitating symptoms? I do have a lot of fatigue and lack of stamina (not much pain, aside from achiness) but for me, a general sick feeling, lack of well-being, uneasy feeling and sudden nausea are my most debilitating symptoms. I've always wondered about the label of CFS for me since even though I have a lot of fatigue, these other symtpoms are much more limiting for me. I've been checked for everything so we don't think it's anything else at this point. My adrenal tests show they're shot and also high EBV.

    Just a general and horrible feeling of being unwell and uneasy...does anyone else suffer greatly from this I wonder?? Thanks.
  2. LISALOO

    LISALOO New Member

    I tell people my CFS is not just fatigue it's exaustion with a big flu sickness type feeling. I get dizzy and muscle aches. I get naucous easy. For me it's like always being sick, not just exausted.
  3. Cinderbug

    Cinderbug New Member

    Yes, I do know what you mean. I have this constant feeling of just being very unwell. Very vague...not quite nausea...not quite dizzy...Just a constant "Oh my Gosh, I think I'm dying" feeling. But these feelings definitely increase when the incredable fatigue increses. My fatigue actually becomes painful to me when it's bad.

    My other debilitating symptoms are painful, frequent diahrrea, panic, headaches , chest pain with shortness of breath with any small exhertion ( walking, talking), slow thinking. All the tests negative of course.

    Looking a what I just described as my symptoms above, it's little wonder why no one understands what's wrong with me. This description would have even confused me before I was sick and was working as a nurse!

    Hope this didn't just confuse you more!


    [This Message was Edited on 04/27/2007]
    [This Message was Edited on 05/01/2007]
  4. Aelf

    Aelf New Member

    my head just feels really wierd, all the time. I feel like I'm living in a whole different world now. I feel like I have brain damage, but I don't...

    To me my brain is a bigger problem than the fatigue.
  5. victoria

    victoria New Member

    I have tried everything short of surgery for it; which hasn't even been recommended for me as CT scans and dental xrays show nothing even tho my upper molars' roots all end up in sinus.

    but suddenly I have turned up with 1-2 needing root canals (pain while chewing, altho xrays still show nothing!);

    So I had one done, waiting to see if I really need the second one done (underlying feeling is I will be doing it next week).

    Since I got the one done, tho, I do have to say my headaches have been better. I will be happy even if 50% are gone when all is said and done. It was really becoming unbearable.

    Somewhere I read a HUGE number of people with CFIDS also had chronic sinusitis with no evidence of infection.

    I am also continuing to take mucinex regularly as this helped a bit... hoping over the long term it will help, as I've heard from several it did help them and it's been about the only thing I haven't tried.

    I agree that the fatigue feels more like having low-grade flu or mono for the most part tho. Having had mono for a year, this has felt the same.

    best,
    Victoria



    [This Message was Edited on 04/27/2007]
  6. springrose22

    springrose22 New Member

    I have had CFS for over 2 years now, and I would NEVER describe any of my symptoms as "fatigue". I would describe it as an overwhelming, debilitating flu like feeling. A more proper description is "post exertional malaise" which persists longer than 24 hours, and often for days, even weeks, at a time. During that time, a person often has trouble doing even the basics, such as taking a shower, etc. Fatigue is much too feeble a word. Take care. Marie
  7. mezombie

    mezombie Member

    Can't write more today, but check out Prickles post on the Canadian ME/CFS guidelines for physicians. It really explains what we're going through.

    Great post, BTW!
    [This Message was Edited on 04/28/2007]
  8. greatgran

    greatgran Member

    Yes, to your post..I feel at times like I am dying..Not from fatigue but all the symptoms you mention and many others, not to mention the anxiety /depression ..

    Feel to bad today to post more but sure can relate.

    God bless,
    greatgran
  9. Fmandy

    Fmandy New Member

    I was just googling CFS symptoms and found this from the NIH, and thought the "hidden yeast infections" were interesting (please no war here, lol):

    Some of the proposed treatments for CFS include:

    Antiviral drugs (such as acyclovir)

    <FONT COLOR="#C11B17"><strong>Drugs to fight "hidden" yeast infections (such as nystatin)</strong></FONT


    Medications to treat depression (antidepressant drugs)

    Medications to treat anxiety (antianxiety drugs)

    Medications to reduce pain, discomfort, and fever



    http://www.nlm.nih.gov/medlineplus/ency/article/001244.htm

    P.S. Sorry to get off topic with your thread......[This Message was Edited on 04/29/2007]
  10. confetti11

    confetti11 Member

    Thank you all so much for responding to this post. It is eye-opening to see all the different symptoms. Thanks too for the reference to the Canadian guidelines site. That was very informative. All of my symptoms definitely fit within those guidelines. Did I read that correctly that in their study, only 12% of people returned to the life they had prior to their illness after the 9 years they tracked them?! That is not encouraging.

    Today is a good example of what I struggle with. I woke up tired, but I would say far from bed-ridden fatigue. Tried to go to church and just felt so nauseous or uneasy (uneasy for me is the feeling that I COULD be nauseous at any moment) the entire time that I could hardly sit there. I kept on though, took a few bites of protein bar (eating always seems to help the nausea) and finally burped a little (quietly, it's church after all) and the nausea started to lessen. I made it through the rest of the service. Afterwards, I went to a park where I sat in the sun and ate the salad I had brought with me, then I ran a few errands and headed home. Toward the end, started to feel very nauseous again. And I DO feel tired...but for me, it's a constant low-level tired. It would almost never keep me at home. The nausea and uneasiness on the other hand is an entirely different story.
  11. mossrose101

    mossrose101 New Member

    muscle spasms
    muscle twitching
    deep body pain, even soles of feet hurt
    arms and legs heavy, like filled with cement
    feel like did weight lifting with arms for hours
    joints sore and giving out when using
    sometimes a total body meltdown, brain slow, body shaky, total physical and mental fatigue and absolutely must lay down
    constant waking through the night (not anymore for this, sleep good now because of medication but sleep anywhere from 10-12 hours a night)
    cant find the right words sometimes or they come out wrong
    eyesight seems to be getting worse (not sure if this is a symptom or not)

    These are some of the symptoms I experience. These symptoms come and go at will. The meds I take are helping control or take the edge off some of these symptoms but on a bad day, they barely help. I seem to have less bad days though because of the meds. Never really feel well though but am learning how to cope and how to spend what little energy I have.



    [This Message was Edited on 04/29/2007]
    [This Message was Edited on 04/29/2007]
  12. confetti11

    confetti11 Member

    for the responses. It's such a wide array of symptoms, it's a wonder all of us don't go nuts on top of it all.
  13. acer2000

    acer2000 New Member

    Brain Fog :-(