The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith's smart ideas for understanding diseases, which may soon be applied to ME/CFS.
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What went wrong? (Please help Please) (+ helpful information for some I guess)

Discussion in 'General ME/CFS Discussion' started by Folk, Nov 11, 2014.

  1. Folk

    Folk Senior Member

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    So I've been dealing with Fibromyalgia for 7 years (wich developed allodynia too). I did lots of things (acunpuntre, pillates, exercise, massage, chiroxpraxy, fisiotherapy, some fast experience with meds) with zero or low success during this period. Then stopped it all and tried to just "live with it". Was hard and depressive.

    This year (2014) I decided to fix it, the best I can so I could live better. I went to some doctors, started taking Amytrill and exercising. A little improvment. Experienced some side effects with Amytril so cut it off and started on Baclofen and Zolpidem for sleep. I was running and swiming. But suddenly my legs started to hurt more and more and one day I was with tighter pants in the class and had an horrible pain. From there it just got worse.

    I got off Baclofen cause I believed it was causing my pain, and start on Cymbalta.

    It did ease a little my pain (and speccially my numbness on the legs wich was getting everytime worse).
    I stopped runing and start some light exercise on water wich helped some days a lot, but this didn't last much during the whole week, and sometimes hurt a little if something went wrong. (I acctually didn't know if in long term it was better or worse)

    Cymbalta had horrible side effects (no libido, couldn't sleep, sometimes brain fog) but I kept going for something like 4-5 months.

    One day I decided to drink Green Smoothies everymorning. It was AMAZING. I got something like 50% better in two days. And it lasted... Speccialy with the allodynia. I could easily use heavy jackets again!!!

    That was it. Stopeed Cymbalta with horrible withdraw effects and changed my whole diet.

    Became vegan, something like 50% raw. No caffeine, sugar, meat, dairy, eggs, gluten, processed food at all!
    The last thing to remove was alcoohol, wich made my pain sooo much better when I drank, but i still i tought it was better to stop.

    Was something like 2 amazing months. I was everytime better. More energetic, a lot happier, a lot less pain, sleeping better (still with Zolpiden but experiencing some days without)

    Suddenly I started getting some ocasional bloating with abdominal pain. I didn't know the reasons...
    I kept going. The bloating and pain got more often and worse.

    I tought it was bananas at first (I got the pain and bloating one time after eating bananas and was eating it almost daily) so I stopped it.

    This situation led to constipation... It only got better with alcohol strangely.

    One day it happened with pineapple, other day with beets, other day with cookies (no gluten no dairy) (It was IMMEDIATLY after eating). Even in small quantities.

    So I cutted it off everything I could figure it out was making me worse. I went to lots of doctors. Endoscopy, ecography, blood tests, everything ok (High PH in the urine only but according to the doctor nothing to worry).

    MY pain got worse, my numbness in the legs got back for a while, I started having problems seeing and concentrating, started eating basically rice and beans, nuts, potatoes and some vegetables. Flaxseed, quinoa and chia seeds. And still eating this basically, wich is what makes me feel better. This week I discovered that avocado, dates and chickpeas are ok too. (I can eat big quantities of food like potato or the ones listed above with feeling little or not much pain, but some specific foods trigger pain.) I got tested for B12 but still not ready.

    I'm with a nutricionist who recomended me suplementing some vitamins and 8000 UI B12 daily, cholrella, Vitamin D (massive doses), NAC, Glutamine. (My numbness stopped for a while, my pain is not out of control but my stomach still hurting, and my vision/ concentration got worse and now is everytime (perhaps worse before eating but don't know)).


    I know this is overwhelming, and too much information but I did the shortest I Could.

    Please please I would really like some views and help, the doctors, as always, aren't helping me at all...

    Thx everybody, hugs.
     
    Christopher likes this.
  2. South

    South Senior Member

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    Southeastern United States
    FWIW, the experiences of 2 people: (one is someone I know, one is someone who maintains a blog I read)

    The person I know had fibromyalgia for years, and then want on a mostly raw diet. The fibro disappeared on that diet, but after a year or so on the mostly raw diet, she then developed some other problems that were different than fibro. She then changed her diet again, this time to include slowly stewed meat/fish/poultry stews, and increased her starch intake by adding potatoes and rice to her diet. The new problems disappeared. Her verdict: a mostly raw diet can clear out a lot of toxins, or whatever you want to call them, but after a number of months on the all-raw diet, the body needs other nutrition to build itself up.

    The person whose blog I read (he never had fibro but had other health issues) also went mostly raw, for years, and although he felt wonderful on it for a year or so, then slowly went downhill - but he chose to remain on the mostly raw diet for another few years. Lost muscle, became somewhat sickly. He too, finally then changed to a diet that included some animal protein, and cooked starches, and regained his health. He made the same comment the first person did - that a mostly raw diet can be healing in the short term, but that it's important to know when that time is over, and to then change the diet so the body can rebuild (or some such terminology)

    If either of these people has an insight to mother nature, then I guess the idea is "there's a time for everything"...?

    On a different direction, there's this thread:
    http://forums.phoenixrising.me/inde...e-been-looking-for.26976/page-103#post-521864

    I hope you feel better soon!
     
    justy, Alea Ishikawa, helen1 and 2 others like this.
  3. Folk

    Folk Senior Member

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    Hey South thanks so much for you reply.

    The thing is I cut off stuff like meat because it made my pain worse. It's right after eating... I get a itchy like feeling in my skin. Like it's coming from below the skin. And I was consuming rice, beans, potato and chik peas when I was on my diet (even though the goal was to go fully raw I didn't get there).

    I'm just really worried cause I have no idea what's going on inside of me... Why it hurts.. I have no vomiting or diarrhea. But strange bloating from time to time. And if it is this what's causing my sight/brain fogness. I also had something like candida on my genitals (wich I was having from time to time, with no aparent reason, disapearing in one day when I used some med...) so I tought that could have some realtion with candida in the gut?

    really really confusin...
     
  4. Valentijn

    Valentijn Senior Member

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    Folk and Alea Ishikawa like this.
  5. Folk

    Folk Senior Member

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    Thank you Valentjin for your reply.

    I don't really think I have a meat allergy. Before I became vegan I used to eat basically meat and vegetables. That was my diet for 4-5 years (of course with some sugar, alcohol, wheat and other stuff ocasionally).

    I just got the felling that eating meat might make my pain worse... Since removing it made it better. But could be all the other triggers and perhaps not the meat it self. I'm thinking about reintroducing it.
     

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