CFS and loss of appetite

Discussion in 'Fibromyalgia Main Forum' started by englishbob78, Jan 12, 2010.

  1. englishbob78

    englishbob78 New Member

    Hi, was just wondering if anyone else has suffered severe loss of appetite with their CFS?
    Strangely I also never get thirsty and have to force myself to eat and drink everyday. I've just registered positive on De Meirleir's hydrogen sulphate test and was wondering whether that might be the cause.
    Any ideas gratefully recieved!
  2. 3gs

    3gs New Member

    I have posted on this before. Yes I have lost my appetite and also have to make myself eat. I get hungry(sort of)but don't want or remember to eat.

    do things taste weird also? this was talked about not to long ago.

    Not familar with hydrogen test,is this a blood test you can request?

    sorry I can't help. Its got me stumped!
  3. englishbob78

    englishbob78 New Member

    It's weird. It's as if my body wasn't getting any of the nutrients from the food I eat. Normal people sit and eat and feel better for it and will then get energy later on. With me, nothing!
    The hydrogen sulphate test determines whether there is an overgrowth of bacteria (i think this might be inhibiting the hunger instinct) in your gut causing the formation of hydrogen sulphate. It's the brain child of kenny de meirleir who believes this hydrogen sulphate combines with heavy metals to make a toxic combination. This in turn affects the immune system causing tiredness. You can request the test online at protea
    All the best
  4. 3gs

    3gs New Member

    by the way welcome to board!

    Understand what you are saying. I will think that maybe if I ate I would feelbetter and have energy, but like you-nada. It used too be. I have noticed if I drink a coke(think its the sugar)it will sometimes perk me up.

    thanks for the info. If I learn anything I'll let you know.

  5. AuntTammie

    AuntTammie New Member

    You said, "It's weird. It's as if my body wasn't getting any of the nutrients from the food I eat. Normal people sit and eat and feel better for it and will then get energy later on. With me, nothing!"

    I wish I lost my appetite - for me it seems that the same "not getting nutrients" thing is happening, but it's like my body recognizes that it isn't getting enough nutrients and is so starving for them that it keeps demanding food to try to squeeze any nutrients out of it that it can (even if they are minimal)

    I have read quite a bit about the H2S theory and it makes sense as a prt of the picture, but if it is the reason for the appetite loss that you are experiencing, then it must somehow have the exact opposite effect on me
  6. karynwolfe

    karynwolfe New Member

    Yes, I never get thirsty and have to eat AND DRINK at intervals or else I'd never think to do "naturally." I tell people my hunger/thirst button is broken. lol

    It's common for us
  7. shari1677

    shari1677 New Member

    When I get a flareup - I lose my appetite.
  8. englishbob78

    englishbob78 New Member

    Hi, do you know if people recover from it? How long have you had it?
  9. Sceptical

    Sceptical New Member

    Why don't you try low dose remeron? Start at 7.5 mg (antihistamin at this level). You will sleep like a baby and eat like a lion. I gained 7kg . Watch your symptoms. It might increase daytime drowsyness right now (before your treatment). I still use it and love it with no side effects. If your blood pressure is low right now you have to wait and do not start it right now.

  10. englishbob78

    englishbob78 New Member

    Am already on 30mg Remeron for depression and it does not increase my appetite at all! Thinking i may have serious problem with anorexia and going to try therapy.
  11. englishbob78

    englishbob78 New Member

    PS. Do you think being on 30mg remeron will make any difference to kenny's treatment?
  12. Sceptical

    Sceptical New Member

    It does not matter, just tell him honestly. Everyone takes something. Before his treatment I also took 30 mg Remeron which was not helpful for me at that time either. However, the treatment will resolve many issues and you`ll be able to decrease Remeron to 11mg (3/4:15mg). It is important bc you just like me are overstimulated and do not need further stimulation. This is probably why you do not eat. Beyond 11mg Remeron is also stimulating. Do not change your dosage right now bc you might need this dosage to stabilize your mood until further treatment.(Kenny).

  13. MsE

    MsE New Member

    My appetite is as good as ever, and because I'm not as active as I used to be, weight gain is a battle. I do get thirsty. I'm no help at all. LOL
  14. MamaT1967

    MamaT1967 New Member

    if medical marijuana would help. It is given to cancer patients (one of the reasons) to help with their appetite and nausea. Just a thought.
  15. Sceptical

    Sceptical New Member

    Stupid idea. He is before his CFS treatment. MM is only for those who have no other option.
  16. spacee

    spacee Member

    Don't think it is the same as yours though.

    I lost 30lbs, severely thin. Could only eat fish and baked potato three times a day...lying down.
    Too tired to eat sitting up. Gastro. doc suggested Ensure. That brought me up 4 lbs but still baked potato and fish. But at least I wasn't still losing.

    Finally, a doc put me on isoptin sr which is a heart med to control my racing heart beat. About 20 docs had missed. That slowly took away the constant nausea and I can still remember sitting up to eat again. That was in 1988. (Got sick in 1986).

    I tried the probiotics Dr.D. recommends. Didn't do anything for me.

    Hope you find something, really soon!


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