Discussion in 'Fibromyalgia Main Forum' started by teller7, Jun 14, 2010.

  1. teller7

    teller7 New Member

    They say CFS waxes and wanes. Here's what happens to me. I can feel fairly well. I always rate it from 1 to 10. When I'm fairly well I'm about a 4 or 5. I can feel like that it lasts for days and sometimes a couple of weeks. Then the fog starts to set in. Then the weakness. Can't think or remember what I'm doing. Then the flu like symptoms. Intestines feel awful, ache all over, temp below normal. Head feels like it's full of cotton and feet feel like they're stuck in cement. There's nothing else to do but lay down and wait for it to pass. Sometimes it lasts for days and days. It's sickening that drs just look at us with a blank stare because they just can't fathom a person feeling that ill and tests all come back normal. We feel dead but we still have a heart beat. Just wondering if this sounds familiar to anyone.
  2. Svette_Palme

    Svette_Palme New Member

    Yes, I go up and down too. Sometimes, when it gets bad, it happens so gradually that it feels like I've allways been that way. But then two weeks later I find myself riding my bicycle!!

    But my symptoms are a bit different than yours, I suspect it is the difference between Fibro and CFS.
  3. AuntTammie

    AuntTammie New Member

  4. greatgran

    greatgran Member

    Oh, I can relate and then some.. Do you get dizzy, off balance and weird head feelings? Two weeks ago I was able to be so called normal for about a week then out of the blue my head started to feel weird and I have spent over a week not able to do a thing but rest. As you said we feel dead but our heart still beats.

    So exhausted but can't sleep, anxiety then sets in . Have found nothing that really helps except lots of rest. No rhyme or reason for this.. and my doc agrees and feels helpless cause everything he has given me has failed..except xanax seems to take the edge of at times..

    Yep, hate those docs that give you the darn look. Thank goodness the doc that helped me in the beginning is back and he knows its real but as I said he doesn't know what to do. If most docs gives us the blank stare how are we suppose to explain this to family/friends..

    I did tell him that the rheumy he sent me to wanting me off xanax. He said if that is all the helps you then take them and wrote me a rx..

    Misery isn't it??

    Hugs and God Bless,
  5. gapsych

    gapsych New Member

  6. gapsych

    gapsych New Member

  7. clamhr

    clamhr New Member

    Oh yes, i could write a book about CFS. it's horrible and i left my doctor 5 yrs ago for the same reason - the look on his face, just cant understand it, and has no intentions of understanding it either. got a new doc and what a difference. she moved last year and i thought she was fantastic until i saw this next doc who is incredible. he's been to conferences on CFS and fibromyalgia and his knowledge is unbelievable. he has books for patients to read, leaflets of materials he has copied for patients from conferences, i mean i've never been to a doctor so willing to get his patients educated with these diseases. And as he says "i don't know personally how you feel but i have enough patients with the same symptoms that i understand and have read enough material that i can sympathize with you" Now THAT is a doctor.

    yep, my feet feel like they're in cement and sometimes i feel like i have the blood pressure cuffs on both legs besides the cement shoes. put that along with fibrofog, then try to get my fingers coordinated to pick up a penny. sometimes i even feel like my muscles have swelled up and too big for my skin and sometimes my tongue feels too big for my mouth, and god the list goes on.

    so in a sentence, yes only toooo familiar. you are not alone.
    take care,
  8. shari1677

    shari1677 New Member

    I most definitely do feel like this teller7. Right now I am on an upswing. I feel good, not 100%, but a little better than normal.......but it is the calm before the storm, I'm sure.
  9. Nanie46

    Nanie46 Moderator


    The cause of your illness must be found in order to recover.

    It is likely infectious.

    There are infections such as Borrelia burgdorferi and Babesia that can cause all of the symptoms you describe and those infections cycle due to the life cycle of the pathogens, giving people some better days and then feeling worse again.

    These infections are often found together and are common.

    Borrelia burgdorferi can cause fatigue, flu like symptoms, pain, below normal temp, brain fog etc.

    Babesia can cause overwhelming fatigue and post exertional malaise among other symptoms.

    Please take a look at the comprehensive symptom list on page 9-11 of this paper, and the symptom info about Babesia, Bartonella, Ehrlichia etc on pages 22-27....