When Death Feels Near with CFS

Discussion in 'Fibromyalgia Main Forum' started by MsE, Jul 8, 2010.

  1. MsE

    MsE New Member

    I can't say that I feel sad, nor do I feel frightened. I do, however, feel the end creeping up more quickly than a year ago. What bothers me is that I'm too darned tired to take care of some of the things that need to be done--the sorting, destroying, reorganizing, filing, writing---it is so hard to stay focused. Walking is becoming more difficult because I suddenly feel weak. I get so short of breath. Everything I need to function well is slowly slipping away, and there is much to do. Am I alone?

  2. MsE

    MsE New Member

    Pushing my doc doesn't work. I've tried. He says, "There is no cure." He says, "You'll probably know before I do if they finally find a way to cure this stuff." He says, "Those tests are misleading because everyone has _____________(fill in the blank) to some extent." I think one of the reasons for his reluctance to go whole hog is that Medicare doesn't pay much in our county. The docs don't get the same repayment as they do in, say, Seattle.

    I get some relief, aussiewoman, by taking 1/2 hydrocodone. It is the only thing that eases the pain in my legs and gives me a boost of energy. But I do guilt for using a controlled substance. If my heart is beating irregularly, ativan helps. Another drug that is not supposed to be used for that purpose. I take lots of good vitamins and minerals and some other supplements like fish oil, watch my diet, etc.

    Frankly, I feel too weak and wobbly to try anything else right now. So much of what I have tried has had nasty side effects. I'm, unfortunately, a real princess when it comes to tolerating meds. If there's a bad side effect out there, I'm one of the 1% that gets it.

    Am I sounding totally negative? Don't mean to. It's just that I've been fighting CFS since approximately 1997--maybe before that--and each year it gets more difficult to stay positive.
    I really don't think I'm going to last much longer. Soooo tired.
  3. AuntTammie

    AuntTammie New Member


    I so totally understand how you feel, and I think anyone who has had CFS for even a short time can understand at least somewhat, so please don't worry about being too negative.

    I don't really have anything helpful to say rt now (had to get look for a new car yesterday - no choice my old one conked out) & though I only went to one dealer and had my dad drive me and let him deal with the whole thing (thank God for him.....& he also helped pay for it even though he really can't afford to either), I am still extremely wiped out now & my brain is also shot, so trying to find the words to encourage you isn't really working so well

    ....but I do want you to know that you are most definitely not alone
  4. MsE

    MsE New Member

    Hope no one misunderstood and thought I was going to "off" myself or something like that. Never! I've just hit a major road block and really don't feel like I'm going to live much longer. I'm not depressed about it; just realistic and needing to get some stuff done but unable to function well.
  5. MsE

    MsE New Member

    I refuse to try stimulants because my heart beats erratically at times. I have tried Wellbutrin. It, too, caused jitteriness. No, I haven't tried provigil or nuvigil. The doc has never suggested either, and I don't know enough about them, I guess, to push him to prescribe them. I'll do some research.
  6. MsE

    MsE New Member

    Yes, I have some arthritis. Yes, I may have FM--have the symptoms--but the doc didn't diagnose it. And yes, I'm trying to find a naturopath locally, but haven't had any luck so far. I've also tried acupuncture and chiropractics. Both, after a few hours relief, throw me into major flares and I'm down and out for a long time. I've been advised not to go back to a chiropractor because of some neck damage caused by a whiplash years ago. The chiropractor made it worse, so now I stay away from them. I would like to try the acupuncturist again, but right now even thinking about it is too much to contemplate.
  7. MsE

    MsE New Member

    Your big hug is much appreciated, Aunt Tammie, and just saying what I'm thinking on this board helps. You know?
  8. MsE

    MsE New Member

    Vit. D levels are up where they should be and then some. I've made sure of that after reading all the new reports on it.
  9. Nanie46

    Nanie46 Moderator


    Please do not despair and give up.

    Finding the CAUSE(S) of all your symptoms is the key.

    Just because the Dr says "no known cause" does not mean that there is no hope.... I had to research and find the answer myself.

    Many, many people here have discovered that the CAUSE of their fatigue, pain, sleep problems, etc was tick-borne infections....Borrelia burgdorferi, Babesia (shortness of breath), Bartonella, Ehrlichia, etc.

    Dr's take sets of symptoms and give them a new name such as CFS and FM. They are describing symptoms of a larger, likely infectious picture.

    Please take the time to read the symptom list in this booklet....


    and look at the symptom list on pages 9-11 of this paper and the Babesia, Bartonella symptom info on pages 22-27.....


    Anyone with a CFS or FM diagnosis should have a good eval by a Lyme literate MD.
  10. karynwolfe

    karynwolfe New Member

    I'm so sorry, MsE.

    But chances are if you're still able to walk at all you are not as close to death as you feel, because this disease doesn't kill that quickly... I think, realistically speaking, you'd become permanently bedbound before it reached a severe enough level to kill.

    Have you tried olive leaf extract? It's an anti-retroviral and honestly, from one sufferer to another, the only thing that has helped my M.E. in almost a decade of trying everything imaginable. It's safe for long term use. I also found out I had other infections that WERE slowly killing me (which Nanie helped bring to my attention; we sure do know how to collect infections from strange places, don't we?).

    I hope you'll consider giving it a try before you decide it's too late to do anything.

    It's such a terrifying situation to be in, but you are never, ever alone.


  11. MsE

    MsE New Member

    I requested a test for Lyme back when--the doc refused. He claimed most people tested positive and it would be a waste of time. He didn't add "money" but I'm sure that's a good part of it.
  12. MsE

    MsE New Member

    No, I haven't tried olive leaf extract. We do have a good health food store here in town, so I'm sure I could get it. First I'll have to research its side effects. I'll do that this evening. Thanks for the suggestion.

    I have to admit I feel better this evening. Some of the terrible exhaustion, the kind that keeps me flat on the sofa, has lifted a bit. I don't want to go anywhere or do anything, but neither do I feel faint when I walk around the house as I did yesterday, and I'm no longer dizzy. Hope this improvement lasts.
  13. MsE

    MsE New Member

    I'll research provigil and strattera this evening when I look up info on olive leaf extract. Thank you for all your input today, all of you. I appreciate it so much. I had given up ever finding something that helped without terrible side effects, but I'm willing to do a bit more research.
    Thanks again.
  14. Nanie46

    Nanie46 Moderator


    Your Dr is very uninformed about lyme, to put it nicely.

    Actually, most people test negative, even when they have lyme.

    Lyme is a clinical diagnosis, based on history, symptoms and exam, not a lab test.

    Your Dr could be preventing you from discovering the CAUSE of your illness.

    [This Message was Edited on 07/08/2010]
  15. MsE

    MsE New Member

    My blood pressure fluctuates, but often runs high. My glucose level runs low. When my blood pressure does run low, I feel terrible. Same when it runs high. I'll keep researching.
  16. MsE

    MsE New Member

    What I found on this drug said that insomnia is a common side effect. That would be horrible for me because getting enough sleep is a major problem.
  17. MsE

    MsE New Member

    If they test negative, how can a clinical diagnosis of Lyme be made since the symptoms are much the same as CFS? What different symptoms show up with Lyme? What should the doc watch for?
  18. spacee

    spacee Member

    I feel for you. I think a better doc might help but I know we are often not with
    choices there.

    I agree with alot that has been posted...will just give my own experience.

    At MayoClinic.com Chronic Fatigue Syndrome. They mention that ritalin is
    used on an experimental basis. I printed that and took it to my doc.
    He was reluctant to rx it because of my racing heart but did for the lowest
    amount (5mg) not more than twice a day.

    This is how it has helped me. It keeps me from sleeping in the day. Which
    then helps me to sleep at night. I do not take more than 1/2 a tab twice
    a day. Most of the time once a day.

    Ritalin does not stay in your body but for a few hours. Much less that
    provigil or adderall.

    Secondly I started part of the Stratton Protocol. (Can google).
    I could not take all of the things mentioned...NAC for one, predisone
    for another. But I did take the Doxycycline 100 mg twice a day, a
    probiotic from Walmart (away from the abx) and Vit C 1000 mg.
    After 45 days on the ABX, you change to Flagyl (antifungal) for 10 days.
    Some of this may not be exactly the right amounts...using my memory here.

    I did not feel better until I completed the 4 months and stopped the
    antibiotic and antifungal.

    My ana went from 1280 to 320. I think it was high due to mycoplasms.

    That's a lot to consider but I feel better (just lately) than I have in a long

    Wishing you lots of wisdom and a cooperative doc.

  19. MsE

    MsE New Member

    I am feeling much better this evening. Perhaps it is just that discussing this has helped. You have all given much advice, and I will research all your suggestions. Thank you so much for your kind support. MsE
  20. skeptik2

    skeptik2 Member

    Just wanted to ask you...have you ever had a Impedance Cardiograph?

    Your symptom of severe weakness may be due to a type of cardio-myopathy.

    Ask your dr. about it: if he knows nothing, post to me, skeptik2, and I'll see
    it and find you the number of the company that can tell you who gives the
    test in your ZIP or nearby. It costs about $125 at most, and takes about
    30 minutes. It measures your heart's ability to get blood INTO the heart.

    Most congestive heart failure is because of the heart's inability to pump
    the blood out; that's SYSTOLIC heart failure.

    DIASTOLIC heart failure involves the pumping force of blood INTO the
    heart, and treatment is different than for the systolic heart failure.

    Let me know, ok?

    Feeling like you are dying is terrible; I was there about 15 years ago,
    and sleeping is the only thing that pulled me out of it: I take 1 Halcion
    and one Xanax and sleep 7 hrs to the minute almost.

    When weak and faint and dizzy, LIE DOWN and stay there until your
    head feels clear. Elevate your feet so the blood can circulate better.
    Then get up slooooowly, sit first for 5 min, then stand. I think it would
    help you.

    Dr. Cheney says our need to LIE DOWN NOW OR DIE is actually
    saving our lives, so do it, ok? When you feel stronger you can take
    care of just one thing on your "to do" list. Don't think of ALL of them;
    just take care of one thing only.

    Feel better soon.