Discussion in 'Fibromyalgia Main Forum' started by sunstarsmoon, Oct 1, 2008.

  1. sunstarsmoon

    sunstarsmoon New Member

    Hi my name is helen and i've just been diagnosed with CFS - I have a past history of cancer and truthfully feel worse than i did with the cancer. I can't believe how dopey i am - i seem to be permanently confused and getting worse

    I also can't believe how exhausted i am and how i seem to have a limited about of energy and then that's it. I seem to get more active of a night time (for some reason), and i have a friend whose naturopath told her it had to do with acid. Has anyone heard of this and also has anyone tried the elimination diets they talk of?????, Also if anyone could give me some dietary advice - i'd be most appeciative. I've had to give up work and basically seem to spend most of my life now laying on a lounge - i'm not depressed (except when i can't do what i want), and seem to have days where i have heaps of energy and the next day am exhausted again. Has anyone tried a naturopath??? as this is what has been suggested by my doctor,and i don't know if this will work or not.

    Here in Oz i guess once again CFS is not widely known about - i've managed to find one book on it so far, it's the same as when i had oral cancer.

    All i want to do is get back to living my life again.

    Any advice would be most appreciated.

  2. FMsaddenedspirit

    FMsaddenedspirit New Member

    You aksed what naturopath is . check this web site ... I google every thing.. there is a great place to educate our selfs

    hope this helps

    I am sorry you have this DD ... I to...

    keep fighting ,, never Give up

  3. LittleBluestem

    LittleBluestem New Member

    You say that you have days where you have heaps of energy and the next day are exhausted again. This may be because you are doing too much on the days when you have heaps of energy and are suffering post exertional exhaustion (or post exertional malaise) the next day. One thing that you need to learn is pacing or ‘staying within your envelope’. On your good days, you still need to stop and rest periodically. How often and for how long is something you will have to determine for yourself.

    CFS is a syndrome, so it varies from person to person. No one else can tell you exactly what to do, they can only offer suggestions based on what did or did not work for them. For me, sitting and reading or watching television does not constitute rest. I have found that I also have to pace myself during periods of activity. I need to work at a steady, measured pace rather than go at things ‘full tilt’.

    I think you will find this site informative. Best wishes on getting back to living your life again.
  4. findmind

    findmind New Member

    Helen, have you been tested for the Epstein-Barr Virus (EBV)? It is famous for causing nose and throat cancer (maybe oral also?), so I was thinking that if you have that, it may have led to your cancer and now your terrible fatigue.

    You have days with "heaps of energy" and probably overdo it; so the next day or more you are wiped out. That is classic M.E. (Myalgic Encephalomyelitis).

    For your sake, you must learn what your "envelope of energy" is and adjust your life accordingly. Some days I'm a vegatable, just sitting there; others I can move about or do tough mental work for a few hours, and then I return to being a vegatable, so I don't overdo it.

    When you find your envelope, you'll also find a way to rest up ahead of time in order to do the things that are the most important to you (family, etc.), and know you will probably have to rest afterwards even more.

    I hope you keep on top of any symptoms that are cancer-related and check them out quickly...

    Best to you,
  5. Catseye

    Catseye Member

    If you have a medical doctor that recommended a naturopath, that is one smart doctor! He knows his limitations are only those of his industry, and that help for you is really out there. I am using a naturopathic doctor. I sought one out, happened across his website, did a free short quiz to get a free phone consultation, talked with him briefly, and now he is treating me. I had decided in a few minutes talking with him that everything he said about CFS was consistent with what I already knew. You can find him at becomehealthynow.

    I had found another site, which made it clear that gut dysbiosis was a prime factor in our diseases. I had been treating my guts with the standard things people use: digestive enzymes, glutamine, probiotics and a healthy diet. But I suspected I wasn't doing all I could - something was still wrong. So I got with this doctor, he ordered what I now know to be an extremely important test for us: a comprehensive stool analysis. This, along with a complete blood test, showed how my digestion was or was not working, how much yeast and bad bacteria I had in my guts, how my pancreas, liver and gallbladder were functioning, and he was able to use this info to recommend a treatment plan designed specifically for me. Now I am on a carb restricted diet and lots of supplements.

    The elimination diet should start with eliminating all forms of wheat and dairy. If I explain every little thing to you now, this post will get too long. You can google for "food intolerance" and start seeing why you should avoid wheat and dairy at all costs. It has to do with the fact that they are not being digested properly and this will congest the liver and overwork the immune system - we need these to work properly to get better. Also, eliminating the obvious junk foods, alcohol, aspartame, msg, all the stuff that may be okay for healthy people but is murder on our broken bodies.

    Start eating tons of vegetables. You need them and when you eat veggies, you aren't eating something else you shouldn't. I cut them up very small, the more in one bite, the better the taste. Boil them in chicken broth without msg and eat them all day long. Avoid too many root veggies since they are high in sugar. Things like onions, garlic, bell peppers (all colors), broccoli, cauliflower and zucchini. The more onions, garlic and peppers, the better the taste, also. Raw nuts and seeds, especially when they are sprouted and spiced, are delicious.

    The acid they are referring to is metabolic acidosis. You can google for that, too. Basically, you are low on minerals. You need to get a good mineral supplement, preferably from a health food store, don't bother with grocery store useless vitamins like Centrum. A really great mineral supp which is easily absorbable by the body (which is very important to us, since our bodies are unable to absorb nutrients properly from the food we eat) is Krebs Cycle Chelates.

    You have to pay attention to what forms of nutrients you ingest. For example, most of us do better with magnesium, so you want an easily absorbable form like magnesium malate, taurate or glycinate. If you use magnesium oxide, most of it will pass through you because it is not very absorbable. That's why it's used in laxatives. Magnesium malate is probably one of the best because it has malic acid which can reduce lactic acid buildup, which contributes to post exertional malaise. And you'll probably need extra calcium, too. Your body uses it to help counter the acid balance in your body. If you don't get enough in your diet, it will pull it out of your bones and teeth.

    Another acid to be concerned about is the acid in your stomach - do you have enough? If you don't, you won't be able to digest fats and proteins properly. These are crucial. Without protein, your body cannot make repairs and without the fats, the body cannot make its own hormones. And undigested food particles will congest the liver and confuse the immune system. Betaine hcl is an acid you can use to help digest food in your stomach if you don't have enough stomach acid. I use three 700 mg pills of betaine hcl with each meal containing meats. Betaine hcl is different from betaine. The former is a beet-derived form of the acid found in the stomach for breaking down fats and proteins, and the latter is TMG or trimethylglycine, which is an amino acid - this one you take on an empty stomach but you can't do that with betaine hcl.

    You can take the supplements that the body uses to make energy. They are the mitochondria fuels, things like magnesium, coq10, carnitine and ribose. There is an excellent article explaining how they work called Heart Disease Secondary to Mitochondrial Malfunction. It doesn't matter if you have heart disease, if you don't get enough energy, your heart will be stressed.

    I have detailed my test results, treatment and progress here in this thread:

    "toxic guts, toxic body, why do a comprehensive stool analysis"

    And I talk about what to do about post exertional malaise and energy here:

    "Mitochondria's role in PEM (crash) and how you can reduce it"

    You are the only one who is really in charge of getting yourself better, so start reading and getting familiar with all of these things. You can fix yourself, it's just a matter of time, diet change and figuring out which supplements you need. Dr. Farr at becomehealthynow can help, I'm getting much better. And my what worked for me is extremely long and detailed and is on page 3.

    You've got a lot of homework ahead of you!

    good luck