CFS Symptoms

Discussion in 'Fibromyalgia Main Forum' started by greatgran, Aug 1, 2009.

  1. greatgran

    greatgran Member

    Those of you with CFS would you please list your symptoms and your daily routines ,meds and test you have had or should have.

    I have a doctor's appointment this week and seems the past 2 years I am getting worse so many symptoms that vary from day to day that I am beginning to wonder is there is something more going on.

    Other than the usual labs he doesn't to any futher testing and tells me he "thinks" its just the cfs.. I am sick and tired of feeling this way and living with the doubts.

    Thanks for any info,
  2. isiselixir

    isiselixir New Member

    To reiterate what nink said, CFS is a diagnosis of exclusion so you just have to rule out stuff like thyroid, EBV, CMV, HHV6, anemia, HIV, lupus, celiac, etc. Of course if you have elevated titers for EBV, CMV, or HHV6 that doesn't rule out CFS (they are co-infections that can cause CF) but those are just some tests that are done when you see your doc because, for example, you might be a candidate for antivirals (though it seems they aren't quite the miracle we were hoping them to be). Also there are tests for lyme and mycoplasma. If anyone knows more about mycoplasma testing I would love to know.

    Some of my symptoms include exercise intolerance (except for walking), constant exhaustion, unrefreshing hypersomnia, brain fog, flu-like symptoms esp. feverishness, feverishness and breathlessness when my heart rate goes up, overall body weakness, etc. As mentioned CFS is an umbrella term and there are many people with diff. subsets of it. My subset does not include pain symptoms.

    I am not well enough to have a daily routine or you could say my routine is laughable. I have to do very, very low key "activities" if you want to call it that. lol I am able to stay awake during the day because I take stimulant meds which are the only meds I take for CFS. Otherwise I would be in bed all day. Most my days are spent on the computer, trying to read (sometimes this exhausts me and I can't focus), walking occassionally, talking on the phone, and less often visiting with a friend in person, or family.
  3. greatgran

    greatgran Member

    Thanks for your reply and input.

    I have taken the questionnaire you mentioned but I don't usually have any fever (temp. most of the time is sub normal) nor do I have the sore throat.. all the other yes I do have and more.

    Its the waxing and wanning that gets me to doubting.. One day I feel as I am dying the next I feel I might make it..

    Yes, we are all different and different things work for us individually.

    Thanks for pointing out to me about the stress, pacing and acceptance which is so hard to do....but it is a must..

    God Bless,
  4. ladybugmandy

    ladybugmandy Member

    hi may want to ask your doctor for immunophenotyping, NK cell function, and RNase L activity.
  5. greatgran

    greatgran Member

    Thanks for your reply.. my symptoms are much the same as yours except I don't have the fever but do suffer with anxiety/depression.

    A routine can't have one, nor plan anything, never know from one day to the next.

    My daughter and gran have been visiting, came for a 3 week visit (haven't seen them in over 2 years) I feel so guilty because I can't be up going and doing.. She told me today she thought I was just depressed..Yes , I told her I am depressed cause I have a chronic illness and feel so guilty and sad that I can't go and do like we use to.

    I have never had the CMV, HHV6, Celiac Test so may ask the doc for these.. but he is one that wants it his way..I am looking for a new doc. The good one I had moved away..

    I do feel I need to address the depression with meds as bad as I hate to try and AD..

    Thanks again and God Bless,
  6. greatgran

    greatgran Member

    Do you mind explaining these test for me and how they relate to CFS..I will try to google them but if you have the time...

    Thanks for your reply and God bless,
  7. rockgor

    rockgor Well-Known Member

    My 4 symptoms for almost 30 years have been: lack of energy; sleep
    disturbance; depression; brain fog.

    The only one I take meds for is depression.

    It is almost impossible to schedule anything since I never know if I'll be
    awake, have some energy, etc.

    I am retired. I have no schedule. It's just nap now and then, do a few
    chores when I can.

    It does seem like a lot of us have more than our share of medical problems.
    Good luck.

  8. steach

    steach Member

    Have you ever had a panel of thyroid tests completed?

    If it shows "normal" on the lower end of normal, that may indicate it is not the optimal level for you.

    Just a thought.

    [This Message was Edited on 08/07/2009]
  9. meditationlotus

    meditationlotus New Member

    My worst symptoms are Post-Exertional Malaise, Brain Fog, and worst of all Neurally Mediated Hypotension, which means that everytime I stand longer than about 5 minutes or sit longer than about 15 minutes, blood pools from my head into my feet making me feel like I am about to pass out and leaves me exhausted. I had a Tilt Table Test to prove this condition and this test can help with a disability case, too.

    The waxing and waning that you mention could be based on how much you exert yourself. There is a delayed reaction, and you may not feel bad from the exertion until the next day or the day after.

    Do a search for "Dissinissues" websitei. They have an "activities of daily living" sheet that you can fill out and give to your doctor to help him understand your symptoms and how they affect you.

  10. greatgran

    greatgran Member

    Never heard of it how is it dx?? How and when where you dx? I did google it but didn't find much info as to how the doc will dx this..

    Thanks for the info,
  11. jasminetee

    jasminetee Member

    I can relate to this: "One day I feel as I am dying the next I feel I might make it.. "

    To me, that's classic CFS. It seems like an exaggeration to say "dying" to people who don't have it. They see us looking pretty healthy and it doesn't make sense to them that we can be functioning OK one minute and completely overtaken with illness and pain the next, all the time... day after day... year after year.... decade after decade... but that's CFS.

    As of yet, I don't believe there is much that can be done to fix it. I've tried. I've seen countless doctors and worked for over a year with a CFS Specialist.

    I know it's awful when people in your life don't understand and I think sometimes that part of the reason some PWCs want testing is to try to prove we're really ill. I think you can end up spending tons of money and still not convince the naysayers. I've been there.

    You may find help in treating your thyroid or Hormones because you told me that HRT did help you in the past.
    [This Message was Edited on 08/12/2009]

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