Discussion in 'Fibromyalgia Main Forum' started by HeavenlyRN, May 8, 2010.

  1. HeavenlyRN

    HeavenlyRN New Member

    This question may have been asked and answered sometime in the past but I thought I'd ask anyway.......

    Does anyone feel a difference in the aches and pains of FM with the amount of carb intake?
  2. simonedb

    simonedb Member

    yes, crave and feel better w/them

    think its related to serotonin
    and also recently read about porphyria which I think I could have a form of relating to mcs, and sugar and carbs are rec'd for that
  3. hollie9

    hollie9 New Member

    Porphyria runs in my family, has killed or paralyzed aunts and uncles and cousins. I'd love to hear more about its relationship to CFS.

    My cousin had porphyria bad and was cured by eating all carbs and natural honey. She still only eats that.

  4. HeavenlyRN

    HeavenlyRN New Member

    I just googled porphyria. Scary.

    Thanks for the replies. Hoping to hear from some more folks about the relationship to carbs vs how it makes one feel.
  5. simonedb

    simonedb Member

    could you say more details of that carb diet your relative does?
    I like to eat a lot of rice in dif forms, and way too much chocolate.....but also vegies and protein.
    I have been mostly off wheat (8 yrs) and dairy (2 yrs) but have been giving in lately to oats and today really rebellious, gloomy weather has me nihilistic, so bought some really good granola and organic kefir and had 2 bowls of them, mmm mmmm mmm. hope i am ok tomorrow,dairy tends to make me achier the next day i discoverd :( and oats not good if trying to avoid gluten....oh well, its what i do instead of going to the bar when i need to tie one on i guess hah
  6. hollie9

    hollie9 New Member

    She doesn't need to diet, she's naturally very slender...not a weight loss diet at all.

    When she was sick with acute porphyria she was told to eat lots of bread, rice, veggies, fruit and NATURAL honey (she was to eat a lot of tablespoons of honey first thing in the morning and during the day).

    Now that she's not sick she still eats tons of fruit, more fruit than anybody else I've ever seen. She eats some meat/fish but really doesn't like it much. Also eats pasta and soups, she's always making tortellini soup. She is really an expert at picking out good melons. She eats constantly, small bits all day long and even gets up in the night after going to sleep and eats.

  7. scoach1999

    scoach1999 New Member

    Monday, May 10, 2010

    This is purely anecdotal, but I feel better when I avoid all dairy, bread, red meats, sugar, and carbs. It is boring, and I have a hard time avoiding all of those things all of the time, but I have seemed to notice I feel better when I do. I have surmised for myself that it may not be the nutrient content of those foods, but things that have either been processed out of them, or that have been injected into or otherwise added to them, but in any case, I do better with a modified diet -- no matter how difficult or unnatural it feels to me.

    Also, my experiments over time have shown that I do better when taking certain herbs and nutritional supplements than without. Lately I have begun to explore maintaining adequate (as in "good") digestive health as a means to moderate my symptoms. I don't know if it is because I am retaining fewer toxins, or because I am getting better nutritional absorption, but I have noticed that I feel better.

    On the theory that thyroid may be a contributing factor to my overall CFS symptoms I started taking a modest 2.2% iodine supplement (2 drops added to a glass of pure water taken twice a week). WOW! Right away I felt calmer, a sense of feeling more grounded and assured. It was like night and day -- very distinct. I am not one to "project" changes to things I try, so I discount the idea of the placebo effect. I am critical enough to see what happens whether than to decide in advance what I think or want to happen.

    I also used to deal daily with a fairly constant nagging low-level "background" anxiety -- maybe from the stress of living with inescapable pain and fatigue, and the implications and disruptions it has caused over the last 10 years. In any case, I tried 5 HTP (from Costco) and immediately also noticed I felt more calm. It just took off the edge. I take one in the morning and one at bedtime. It is recommended as a 12-hour supplement. I asked one doctor about it and was told, "The research is not conclusive." It is my opinion that if it is effective when you try it personally, then it is conclusive enough!

    I hope that helps.

    I'm still trying to arrive at the happiest medium in terms of living a life without severe limitations, and as symptom-free as possible. I wish doctors had a better clue about what was going on. Unfortunately I have had to turn my experience into an uncharted journey into the unknown. For all my efforts I at least have found that what seems to work for one person does not always work for another.

    Steve (
  8. HeavenlyRN

    HeavenlyRN New Member

    Steve - thank you for your long, informative post. My husband thinks that I feel worse when I eat carbs. And he would me!! :)

    I've tried cutting out the things that he thinks make me feel worse, but you're's hard! I seem to have very little will power. And when I'm feeling bad (pain-wise) all I want is "comfort food" - which in turn makes the pain worse. It's a vicious cycle.

    I appreciate the information you've given me. I'm seeing the NP at my rheumy's office tomorrow. She's the only one I trust with my meds, etc., so I will take this information to her and see what she says.

    Thanks again - Jan

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