Does it just get worse?

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Diagnosed almost a year ago, but have been dealing with this for over 10 yrs now. Was on adderall then a few months ago put on nuvigil. Up until a few weeks ago I was great! Then the pills stopped working as well. Now I think I'm allergic to wheat or something. Every time I eat flour I get bad acid in my mouth and really bad gas. I've never been one to eat much flour like bread , i always eat pretty clean. I have my weekly cheat days, but when I did it never bothered me. I made sugar cookies the other day and it wasn't good lol

Not thinking, I made cream of wheat earlier and same thing. I used to eat that all the time.

Anyone else experience this? Or has anyone else developed any kind of food intolerance as this progresses?

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16 Replies

  • Posted

    Food sensitivities are really common with ME/CFS. When I first got ill, I had a big problem with this. I went on a four-day elimination diet. You can Google this. Then I slowly reintroduced the foods, but never eating the same food within 4 days. This really helped. In general, for gut problems, there are some supplements that can help. Probiotics and digestive enzymes can help a lot, but you have to get a good brand, like Metagenics. So food sensitivities don't have to get worse with time.

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    • Posted

      I'll eliminate all the wheat and gluten and see if that helps. I didn't mean food sensitivities getting worse. It's seems like with cfs, or in my case, there's just something new every other week lol

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  • Posted

    Hi Stephanie. I cant believe you had to wait that long to get diagnosed, that is terrible. One of my symptoms is acid reflux/excess acid. I take omeprazole which works quite well otherwise i get it from anything and everything, it is not related to any specific food for me its just all the time.
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  • Posted

    Yes. I strongly recommend going wheat and sugar free. Lots of us with this have food intolerances. There is a great book on CFS but not sure I can put it on here as think the posts get deleted. Google Dr Sarah Myhill and books 

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    • Posted

      Thanks, I will look that up. I've read where some people think cfs is because of gluten and wheat intolerance, but like I said, I rarely eat it. And when I got really sick before being diagnosed, I wasn't eating any at the time. I am,......well I was, an avid gym rat. I love lifting weights so diet is a big part of my life. Sadly that is dwindling away : (.......its so hard to take some times. Makes me feel like less of a person. I just hope they figure all this out soon so we can all live a normal life.

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    • Posted

      I used to enjoy running and cycling but now i hardly do anything. I had to give up my home and move back in with my parents. There is no way i could lift weights, my arms and shoulders are my worse affected areas. It is very frustrating.
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    • Posted

      Yes it is. I've spent the past 13 or more years just going to the gym and working. I slept the rest of the time, no real social life. But I really enjoy my gym time. Now I ant get up in the am and go cause I feel horrible. With the nuvigil I was making it 3-4 times a week. Something is happening again and its only been 2. And that's on the weekend when I can go and come home and sleep and rest all weekend. I don't know....i might have to stop. I'm not ready to give up yet though. Unless I absolutely have to. My nd says just to go on the weekend cuz 2 days is better than none. I feel like the one passion in my life is being taken away and nobody can tell me why or fix it. I'm so frustrated and sad right now. That is who I am and now I can barely do it anymore. Sorry to rant, its just a lot to take

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    • Posted

      Dont be sorry, it is hard to deal with. To be honest i am very suprissed you still go to the gym but if it means that much to you then keep it up as much as you can. It could make your illness worse though so be careful.
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    • Posted

      Yes I know. But I just can't except it yet I guess. I gave up cardio 5 yrs ago. I'll hold on as long as I can.

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  • Posted

    Hi Stephanie,

    Sorry to hear that you are experiencing food allergies, now. I've heard they are common with CFS/ME sufferers. 

    I don't think CFS usually progresses or gets worse. In most cases it stays about the same and many sufferers go through periods where they feel better and then feel worse again. I often feel worse during the winter months or when I'm under a lot of stress. It makes it hard to commit to plans because it's so unpredictable. I have found that my energy levels are worse now since I turned 50. I've had CFS for 25 years. I'm assuming you are much younger, so I hope they find a way to diagnose and some better treatments for it in the next few years. There is a new documentary out there that is supposed to be amazing. A very articulate woman tells about her journey with CFS.

    As far as the Adderall, I have never been able to tolerate it because it makes my anxiety worse. I do know some that benefit from it and are actually more energetic on it. I have read that you can build up a tolerance to it, so I suggest you ask you doctor about either increasing the dosage or taking only as needed, that is, taking it less often.

    Good luck! KPD 

     

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    • Posted

      25 years is a long time to deal with this. I quit taking the adderall, I'm on nuvigil now. But unfortunately its not working as well as before. Guess if it did everyone would be taking it.

      Have a good day and thanks for the reply

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    • Posted

      Hey you know that digestion is so important when it comes to energy. Do you react to carbs? Maybe you have ... They can emit toxins in your bloodstream and wreak havoc causing CFS. I am certain my fatigue is caused by ..., candida to be specific. I would highly suggest you take a high potency probiotic supplement and lay off the carbs for a while, maybe it'll get better. 

      [b]Moderator comment: I have edited this post due to its medically unsubstantiated claims. We do not support these types of claims and we recommend seeking advice from a health professional[b]

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