Discussion in 'General Health & Wellness' started by suzi123, Feb 7, 2013.

  1. suzi123

    suzi123 New Member

    Hi I just found this msg board I'm hoping to speak to other CFS m.e sufferers. I have had m.e since last year after the death of someone close and having 4 viruses one after the other and an incredible amount of stress.

    I spent most of last year in and out of hospitals not knowing what was wrong I couldn't get out of bed and kept collapsing and having these attacks I would call them where my whole body started shaking vigorously and felt like I was dying,

    after being accused of being a hypochondriac by doctors I was found to be having seizures that were brought on by eating anything, light, sounds anything I thought I was going to die as I couldn't eat food they were going to put a food tube down my throat but I didn't want that I dropped to six stone but still tried to eat food BC and suffer the seizures

    over the past eight months I have battled and can now thankfully eat some food but I still feel funny my throat tightens up and I feel like I can't breathe and have to stop, I am also very sensitive to drugs and can't even take paracetemol without getting an attack so I suffer the pain, I also have to sit in the dark luckily I can now watch TV tho,

    but am mostly bed bound I can walk to the toilet and back and go for a bath which is good but don't go out when I do I have to have a wheelchair, I have had no help from anyone doctors are useless they just leave you to rot, my own family also abandoned me and accused me of acting it and putting it on for attention which is so unbelieavbly hurtful I don't speak to them now.

    I believe your body can recover but I feel I am stick I know I need vitamins as I have vit d deficiency but my doctors wouldn't give me anything, I drink vitamin drinks but they're not enough I don't know what to do as I want to eat the right foods at the moment I'm eating salmon spinach olive oil water eggs fish porridge honey every day and want to take all these vitamins such as co 10 d ribose etc etc

    but I'm worried my body will react severely like a seizure if I take them but I know they are what will help me, I don't get the seizures as much thankfully but then I avoid the things that trigger them it really is no life I've been waiting on a physio for eight months and they still haven't given one I try to do light stretching everyday when I can I have improved slightly but not enough,

    I just don't know what to do anymore I feel like its a losing battle and worry terribly that I'm stuck like this on the scrapheap,

    I would appreciate any advice, can you recover from m.e? And how.

    should I take all these vitamins but I don't know what to take and how much I don't have a good doctor for advice,

    Thank you
    [This Message was Edited on 02/07/2013]
  2. jaminhealth

    jaminhealth Well-Known Member

    you gotta go in and break up the paragraphs, please...
  3. freida

    freida Active Member

    Welcome, dear SUzi,
    and I am so sorry that you have had this terrible problem, all of the ones you shared with us.

    We do understand!

    Many of us have had many of the problems you have.
    I'm sorry for your sad greifs, as well as for your very difficult illness ,
    and that your family and drs, are not helping you!

    I wonder if you could start slowly and very gradually on one vitamin at a time,
    by deciding which vitamin is most important, to start first, at a low dose, and gradually increase that one over time.
    And then, later on, start doing that with another vitamin or nutrient OR supplement, just one at a time.

    That way, you are much less likely to have a bad reaction, and if you have any problem, you will know better what probably caused it, than if you start more things at once.

    I don't know how much better you will or can get. We are all different on that.
    But I do beleive that you can become better than you are now, or at the least, prevent some other problems.

    It is worth it to take the best care of yourself that you can, and I see that you are doing that.

    You have done a great job, trying to fight this, and trying to eat as well as you can, and wanting to learn and to improve!!!!!

    I would probably start with vit D, which you can buy without a prescription, and is just as good or better form. Look for D3, and I would start with 500mg or 1,000 mg.
    But none of us are drs or can give any actual medical advice.
    We can only give suggestions of what we might do,
    or what helps each of us.

    One thing we are very good at, and can do,
    is giving understanding and emotional support!
    Which as you know, is very very important, too,
    for both healing and for coping.

    Welcome to our group.

    Hang in there,
    and try to take one day at a time, and wait and see how much you can improve.
    There's really no way to know, and all you can do is to keep trying and keep trying to find info and ideas.


    [This Message was Edited on 02/10/2013]
  4. jaminhealth

    jaminhealth Well-Known Member

    and it was my impression that many with ME don't have pain per there must be other stuff going on to....don't know on that one.

    I've had and still do deal with pain daily, but less in the last 30 days....thanks to a supp I'm taking Anatabloc which reduces chronic inflammation in our bodies....

    If you have inflammation that would be something to look into.

    Over the years of my issues since 1999 with the FM, I found thyroid was a big one for me, was undiagnosed for 10 long horrible yrs....and struggled with depression for 10 yrs.

    Then Vit D3 also huge for another bout of depression. That's all gone now, no depression.