New to site have CFS

Discussion in 'Fibromyalgia Main Forum' started by squid_444, Feb 10, 2009.

  1. squid_444

    squid_444 New Member

    Hi everyone,
    I am new to this website and live in Australia. 5 years ago i had Guillain Barre Syndrome which is an illness that affects the peripheral nervous system. As a result i now have what they say is Post Viral Chronic Fatigue Syndrome. I have consulted a specialist in the field and they did some tests like a brain scan and gastric emptying study. The brain scan showed reduced blood flow to 2 parts of my brain. I also had slowed gastric emptying with the other test. The specialist then said this "Medically diagnoses Chronic Fatigue" along with what i told him I had been experiencing. I have been fatigued for the entire 5 years since the initial illness. I have been trying to push through this but feel I am losing the battle. My doctor feels that I have not accepted the diagnosis and must learn to slow down if I am to beat this. My question to any of you is how do you manage it? I cant bring myself to give in to it. I am in need of support from someone else who is living with it.

  2. Forebearance

    Forebearance Member

    Hi Debbie!

    Welcome to the board! Well, I understand how difficult having CFS is. I've had it for almost 19 years now. Mine started with what seemed to be mono. (EBV)

    In the first years of my illness, I pushed myself to go to school and to work after that. I could only work part time, but I tried my best. I had never been seriously ill before, and I had no idea how to cope with it.

    In hindsight, I wish I had taken my illness more seriously. I wish I had seriously rested and had stopped pushing myself. I think I might have gotten well sooner if I had done that. Instead, after five years my endocrine system started to go out. My thyroid and all my hormone levels went down and I felt even worse. Eventually I had to take hormone supplements. And I had to stop working.

    But now I am doing better. I found several treatments that help me, which I learned about by reading this board. New things are discovered all the time, and every new idea or theory seems to appear here. I feel like I am on the road to recovery.

    So there is hope, I think. You haven't been sick that long, which is an advantage. Please enjoy reading the board!

  3. squid_444

    squid_444 New Member

    Thanks Foreberance and Nink for your replies. I hear what you are saying and it sounds so much like my doctor. "Listen to my body". I must rest when needed. My mind is my problem I cant seem to reprogram it to change and realise that resting is not being lazy. That my body needs the rest. My doctor said maybe I should see a psychologist so that they can help with this transition. Maybe he is right!! I dont know if I can change on my own accord. I know what needs to be done but I have a strong mental drive and I think this will win out if it is not changed. My specialist has recommended i take magnesium, zinc and sodium daily!! I shall do as they say and see what eventuates.

    [This Message was Edited on 02/11/2009]
  4. ckingburns

    ckingburns New Member

    Hi, Debbie. I had GBS in 1968. Was totally paralyzed but gradually recovered until Doc told me I was cured. In 1992 I was diagnosed with Celiac and then with Fibro. I also have CFS. Warm water therapy (no less than 93 degrees F has been the only thing that has consistently helped; but now I live in Alexandria VA and cannot find water of that temp for therapy. I am having a sleep disorder test this Friday and then will see a different neurologist who says he treats Fibro with pain management. We shall see. As have all of us, I suspect, I've seen more docs and tried more treatments than I can remember. I tend to be a bit cynical which is not helpful; but hard to avoid. If you haven''t already, and have a warm water treatment center, try it. I'm willing to bet it will help you. Best of luck, Cking
  5. vickiw

    vickiw Member

    I think it's great that you have a doctor telling you to slow down! Every doctor I saw when I first got sick told me I should be exercising. I was in good shape from years of exercise so it was like a joke. I was a former exercise nut who couldn't even blow dry her hair anymore without collapsing, and they're saying "take a walk."

    Like others mentioned, I wish I hadn't pushed it so hard and just listened to my body. I believe fighting it made it much worse.

    I've finally learned to pace...doing LESS than I feel like doing which is very hard, but little by little it is helping to relieve some symptoms.

    Here are some good resources regarding pacing. You may have to click around:
    Dr Martha Kilcoyne's book, Defeat Chronic Fatigue Syndrome: You Don’t Have to Live with It.
    Also, an interview with her on this site at

    Magnesium has helped me and many others on this board, so it's worth a try. I take 650-800 mg magnesim malate per day, in divided doses. The last dose of the day before bedtime helps me sleep. Try one supplement at a time for several weeks and note if it helps. I also take Amitriptyline for sleep.
  6. gapsych

    gapsych New Member

    I hate this!!! All these bumped post and people respond putting in a lot of time and effort when we don't have that much energy to begin with.

    I think someone is having fun at our expense. The name squid? Is that why it was bumped.

    Don't know if it's related. Don't care.

  7. gapsych

    gapsych New Member

    I know I have done the same. But I hate to go to the last post each time especially if there is more than one page. Guess I need to start looking more closely at the dates LOL!!

  8. vickiw

    vickiw Member

    not necessarily...even though I didn't think to look at the date before replying. I've been on this board several years and I read a LOT more than I ever write. Someone may read the thread and be helped by the replies. Not only the original poster reads a thread. I've been helped a lot by this board. I pick and choose what to try and what I think applies to me. It's worked wonders.