i feel helpless like its a losing battle

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' 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. MicheleK

    MicheleK Moderator

    Hello,

    I am so sorry that you have been through so much this past year or so.

    Just so you know, what you are feeling and what you are going through as far as being disbelieved and family turning away thinking you are faking it for attention or any other reasons is the unfortunate but common pattern of what happens early on with a patient with an invisible illness. So many of us have been through that very hurtful and ridiculous scenario.

    You asked if people can get better. Yes! Studies show that those in the first few years of illness have the best chance of getting better. Even if the disease goes on longer you have good odds of getting out of the bed and wheelchair and living an improved life.

    One of the worse things on the body is stress and anxiety. I can feel in your writing that you are experiencing both. Talking here can help lessen those things, but also you will need to talk back to yourself and be conscious of when you are going into anxiety mode, worry over what the illness 'might' do. Try to stop those thoughts in their tracks! They are no good for you.

    When you feel overwhelmed practice some deep breathing. Even 5 minutes of deep breathing and exhaling can calm the mind and body. This is a stressful illness and so are the things that happen due to it, so do try to be alert and know when you need to do some deep breathing.

    As for the vitamins, start low and go slow. I would try to do so under doctor supervision but if that is not an option, and you are unable to eat a balanced diet, I'd start with a powdered capsule or drink of a basic multi-vitamin. Powdered forms are in a form your body can utilize without having to break down tablets. ProHealth sells a good multi-vitamin drink called Energy Revitalization System. Normal use is one scoop, but you could start at just a little bit and if your body is able to handle it gradually add more each day.

    Of course there are a lot of great products on the market you could try. But remember start low and go slow.

    Do not listen to those who do not have the illness and are not specifically educated about ME, when they tell you to push through it. You cannot positive think your way out of this illness. You cannot push yourself out of this illness. You must listen to your body. Listening to well meaning friends or family who do not have a clue about the illness is a recipe for repeated crashing.

    Are you outside of the US? It sounded like you were in a government managed care system.

    Hugs, MicheleK
  3. IanH

    IanH Active Member

    I feel for you suzi. It can seem like you are on downward spiral. I have been there but am now well away from it. Michelek has said it nicely.

    I would suggest:

    1. A deep relaxation tape or music regularly. (or meditation). Keep up the stretching exercises but dont do any more than that yet. You have done some work on identifying triggers. You could now apply some of that thinking to other symptoms. This illness requires a very slow, accepting philosophy. You know yourself, others do not.

    2. Start with vitamin B12 sublingual lozenges. ( dose= 1000mcg twice a day). Preferably methyl-cobalamin or or hydroxocobalamin or cyano-cobalamin. Whichever you can get. This vitamin alone can raise your energy and deal with many issues in severe ME. If you are over the age of 55 then it is very likely you have low levels of B12 anyway.

    3. Since you have a vitamin D deficiency, you could start on 5000IU daily. This is a safe level. If you have hyper-parathyroidism you may need to start you vitamin D at 1000Iu daily. However it is very rare that a person with this has a problem with vitamin D at 5000IU daily but caution would be prudent. Seizures can also be the result of chronically low vitamin D levels in some people.

    4. Take magnesium citrate, taurinate, succinate or chelate or a mixture (but not magnesium oxide by itself). Take 200mg twice daily. If you get diarrhea (or worse diarrhea ) then cut down to 100mg twice daily until you get used to it. Deficiency of magnesium is also a possible risk factor for seizures in some people with ME.

    5. You could add ubiquinol (CoQ-10) 50mg to 100mg daily. If you cannot get that then take ubiquinone (also CoQ-10) 100mg to 150mg daily. However this is not necessary to start with.

    6. You could add a multivite tablet, especially one which has selenium in it. (Some do some don't)

    Later (about three to six weeks) you can add some other items to bring up your energy, reduce muscle fatigue and deal with toxin metabolism, ie. folate, zinc, glutathione (or NAC), etc.
    [This Message was Edited on 02/07/2013]
  4. Ronaldo60

    Ronaldo60 Member

    . . .that's similar to my story way back in '87 when my health-decline started from similar causes. Gradually got worse and worse until an incidental treatment for bronchitis/asthma "just happened" to alleviate my severe CFS-symptoms and I started learning how viruses and all kinds of stress/trauma can disrupt our hormonal pathway known as the HPA-axis. Even our National Institute of Health had found evidence of low cortisol (our "good" stress-hormone) among CFS-sufferers, and years later, actually conducted a trial using low-dose cortisol as treatment. Their protocol left a lot to be desired, and results were inconclusive. But, the fact that so many women compared to men get stricken with these "mystery" illnesses surely points to hormone-imbalances, and it sounds like what you need is an open-minded endocrinolgist familiar with the late, great Dr. William Jefferies who successfully treated many cases that sound like yours!
    [This Message was Edited on 02/08/2013]
  5. suzi123

    suzi123 New Member

    Hi thank you for your post that's very interesting because before all this CFS started since I was 18 I have had a hormone problem namely Pcos which o have suffered from again there is no cure, I wonder if its linked? I have seen lots of endow but they never help they just say oh you have to live with it I have cysts on my ovaries and suffer all the symptoms I'm now 32 and have cfs
  6. freida

    freida Active Member

    I answered you on your post,
    on the Health board, suzi.

    :)
    Leah
  7. Ronaldo60

    Ronaldo60 Member

    As Dr. Jefferies outlined in his medical textbook, "Safe Uses of Cortisol," back in the eighties, many cases of mild cortisol deficiency are left undiagnosed and untreated. He would routinely prescribe a low sub-replacement dose of cortisol to almost all of his patients with "unexplained chronic fatigue." If lots of your symptoms are inflammatory and hypoglycemic, 5mg. prednisone/day is something you might be able to convince a doc to prescribe for you. This is the equal-strength dose compared to the 20mg. hydrocortisone Jeffries would recommend. Time to think outside the box? Why do so many more women than men have CFS? Why is it caused by some stress/trauma/viruses or pre-disposition that also affect our stress-hormones? Why are so many of your symptoms also similar to a switched-on "fight-or-flight" response (too MUCH adrenaline?). Cortisol and adrenaline are our two main adrenal stress-hormones, and they normally are in a delicate balancing-act...but if they get unbalanced, bad news!
  8. IanH

    IanH Active Member

    suzi, you seem to posting a lot of posts.
    Are you managing to read them? Are any of them helpful at all?