cfs advice for medication and diet

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by mohanan padachery, Sep 14, 2013.

  1. Hi all
    I am happy to see a forum here to share our grievances. My case is also cfs. I have multiple symptoms like muscle pain, disturbed and unrefreshing sleep, loss of energy, short term memory loss etc. I need advice from any experienced patient or specialist what medicine should i take and what nutritional diet should i take. As of now I did not try any allopathic medicine. Am trying ayurvedic medicine. The interesting thing is whoever doctors I cosulted they asked me to go to Phychiartic and I tried some anti depressants but not use. I am totally in a unexplainable condition and not being able to do any job due to this condition. So kindly advice me what to do ?
    Thanks & Regards to all
    Mohan
  2. Soul*

    Soul* Active Member

    Mohan we all are so different so there is no 1 answer to your question. What helped me with pain is finding out what food intolerances I have and sticking to a strict diet.

    What works for me doesn't have to work for you though and what I am intolerant too can be different for you.

    For me sugar and dairy and caffeine will increase my pain. I used to be in pain almost 24/7 hardly being able to walk or even hold a pen. Now I am almost always able to manage the pain level if I don't overdo and don't have the stiffness or extreme muscle weakness to often anymore.

    It hasn't increased my energy level though but I don't feel as sick all the time anymore.
  3. GeminiMoon

    GeminiMoon Member

    My suggestion would be go to the bookstore, the library or Amazon and get as many books on CFS as you can. The more you learn about, the more you will be able to cope with it. There are many good books out there.

    I do take many supplements; I find 400 mg of Magnesium and B Complex 50 are the most helpful. I also use homeopathic remedies that treat flu symptoms when I get a flare up. I take a mild antidepressant that helps me sleep & an anti viral when I feel a flare coming on. These medications enable me to function and go to work every day.

    I have had this illness for over 25 years. It does get better with time but it has never gone away completely. I just have take very good care of myself.

    I hope that helps! This website is great and I am glad you found it.
  4. jaminhealth

    jaminhealth Well-Known Member

    I just heard Dr. Cannell on the radio this morning and he's the Vit D major MD here in the U.S. now....make sure those Vit D levels are optimal.

    He was saying if a person is below 30 or below, the Vit D is being used up all the time, once a person gets to 50, then some "stores" begin to take place and the Vit D is dispersed to all the other body parts.....

    SO MANY are deficient and we've discussed this here for a long time, I came up really deficient when I finally checked in 2006, I was in a depression and once I got my levels UP, the depression lifted....

    He recommended 5K of D3 daily.. jam
  5. Thanks Soul, I also curtailed the coffeine, sugar and dairy products but still there is burning inside my both legs. How can I improve my energy level as presently I am not taking any medicine even I could not found any doctors near to me to take advice.
  6. advice me to take some supplements to improve my overall condition like energy, pain, sleep disturbance, lack of concentration, too much of appetite is also one other problem I am facing but even I eat lot it does not produce any energy.
  7. Soul*

    Soul* Active Member

    I'm sorry Mohan, I wish I could but I do not know what to take as supplements. I have tried all kinds of treatments and supplements but so far they have not helped me energy wise. Maybe others can advise on that or you could run a search on the board on the word energy and see what all everyone tried that may have helped them.

    You could have a bloodtest done maybe to see if there is anything lacking. I had a major B12 deficiency but the B12 injections I got did not help me energy wise though the deficiency was solved that way. Energy wise the only thing that helps me is pacing myself and not pushing on to the point where I am actually getting tired or in pain but stopping an activity well before that. And taking plenty of rest in between and making sure I get enough sleep, get the right amount of the right type of foods. If the body needs to digest all day long I can imagine that takes up a lot of energy too. And if we start gaining to much weight that will take up more energy too.

    Top of the page there is a contact us link. You may want to ask advice there since those are the people who are experienced about the products on here. Good luck to you to find some relief and more energy. Take good care of yourself!
  8. mbofov

    mbofov Member

    Soul - I took B12 for years with no noticeable increase in energy although tests indicated I needed it. Then 2-1/2 years ago I added in 800 mcg. of folate in the form of metafolin (Solgar brand) and within 2 days or so my energy increased markedly. I've taken B complex for years and years so theoretically shouldn't have been deficient in folate. However, almost all B vitamin products use folic acid, not folate. Folic acid is a synthetic form of folate and many many people have a MTHFR gene mutation which interferes with the conversion of folic acid to folate. (although I don't know why our bodies should be required to convert something synthetic into something we can actually use!) Anyways, a folate deficiency causes macrocytic anemia, and, of course, fatigue. Also, folic acid can actually CAUSE a folate deficiency as it competes for absorption with folate. So you might look into this - it's made a huge difference for me. It hasn't stopped my crashing, although I recover from crashes more quickly than before. I can't attribute the quicker recovery time all to the folate as I've done many different things, but know I would still not have the energy I have without the folate.

    Folate and B12 should always be taken together, as taking folate alone can mask a B12 deficiency.

    It's very important to note that suddenly increasing one's stores of folate can cause a sudden potassium deficiency, because as cells start to multiply and heal with the folate they need, their need for potassium will increase. I learned all about this here: http://forums.phoenixrising.me/index.php?threads/active-b12-protocol-basics.10138/

    If I had not been aware of the potential for a sudden drop in potassium levels, I would have stopped the folate because after feeling better for a couple of days, my energy suddenly tanked and I felt horrible. And this new fatigue was remedied within a couple of days by adding potassium. I still take 400 mg. of potassium a day.

    One more thing - look at your MCV (mean corpuscular volume) levels on your annual blood work. A high-normal number, even still in the normal range as mine was, can indicate a B12 AND/OR a folate deficiency. It was years before a doctor pointed this out to me. I had to do my own research on it and learned about folate. So the top of the normal range was 100 or so and my numbers were 97, 98, etc. , still "normal", but definitely abnormal.

    Mary
    Soul* likes this.
  9. mbofov

    mbofov Member

    Mohan - An excellent book which might help you is called "Natural Treatments for Chronic Fatigue Syndrome" by Daivati Bharadvaj, N.D. You can get it on Amazon and used copies are not too expensive (that's what I bought). He mentions the following supplements to take for CFS:

    Folic acid - 800 mcg. up to 10 mg. - however, as I explained above, I think it's very important to take FOLATE in the form of metafolin, not folic acid - see http://forums.phoenixrising.me/index.php?threads/active-b12-protocol-basics.10138/

    Vitamin B12 - 2,500 to 5,000 mcg. - he says to get it by injection but sublingual will work too - I believe methylcobalamin is the best form

    NADH - 5 to 20 mg. daily

    Vitamin C - 1 - 2 grams daily

    Glutathione - he recommends intravenous. I know this would be impossible for most of us. Another form which is relatively inexpensive is sublingual. A good sublingual product is Chem Defense by Source Naturals. A rather expensive form of oral glutathione is called Acetyl-glutathione. It's pricey. Regular reduced glutathione is not expensive but we absorb very little of it, so I think the best route is the sublingual.

    Alpha lipoic acid - 300 - 600 mg. daily

    Selenium - 100 - 200 mcg. daily

    Vitamin E - 400 - 1200 IU daily

    Magnesium (aspartate or citrate or malate or glycinate) - 500 - 1,000 mg. daily (magnesium has helped a lot of people with energy and pain)

    Zinc - 30 mg. daily, up to twice a day

    l-carnitine - 1 - 2 grams daily, up to three times daily for 3 months.

    Co-enzyme Q10 - 100 mg. daily

    Essential fatty acids - 1,000 mg. DHA & EPA daily or evening primrose oil, 3 - 6 grams daily

    l-acidophilus - 1 billion viable bacteria per dose

    I have taken all of these things and they're good - but a few more things helped me too. I had to take supplemental potassium - this was very important. I take 400 mg. a day.

    Also, my adrenals were very weak several years ago. I had to take an adrenal glandular product - a good one is Drenatrophin PMG by Standard Process. I had to take about 3 times the recommended dose for several weeks as my adrenals were so weak. Also 500 mg. pantothenic acid for adrenal health. A chiropractor who does muscle testing helped me with this.

    I also had to start taking hydrochloric acid with each meal as I was low on stomach acid. This was also very important - If I hadn't sorted this out, I would not have been able to absorb any of the other supplements.

    So you can see, it gets rather complicated and we are all different. But I think the above list is a good starting point for probably everyone.

    I do strongly recommend getting the book I mention above - I think it's one of the best out there. And read the posts here about what has helped others with energy etc. Good luck -

    Mary
  10. mbofov

    mbofov Member

    Mohan - re sleep, you might try melatonin and 5-htp, you'll have to read about them. Also magnesium can help.

    Mary
  11. mbofov

    mbofov Member

    Mohan - one more thing, again :) I've found it's best to start with one thing at a time. Otherwise I will have no idea what supplement is causing what reaction, whether it's helping or hurting, etc.

    I think a good place to start is with magnesium malate - this has helped many people with energy and pain. But you should also do reading about everything else.

    good luck!

    Mary
  12. newlifer

    newlifer Member

    I agree with mbofov take it slow