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ME/CFS myalgic encephalomyelitis/Chronic Fatigue Sydrome

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beth1999
beth1999

Hi, I'm 18 and I have ME/CFS. I've had it since I was about 13, and wasn't diagnosed until I was almost 16. 

I suffer from migraines, fibromyalgia, IBS,  Reynauds, of course chronic fatigue and constant flu symptoms etc. 

I am frequently at the hospital/doctors and I have never found a solution for on going symptoms like many other with the condition. However, after moving to Dundee and living away from my parents for studies,  I am able to change my diet and have a better routine suited to myself and monitored by my flat mates.  But I don't know how to plan a good diet. 

Tonight I am just back from the hospital after receiving a new set of antispasmodic because I've been rolling on the floor in agony for 12 hours unable to go to the toilet. I don't know what causes the flare ups. 

I'm wondering if anyone can provide information on what might be causing the flare ups, not only to avoid them but any replacements you are aware of or have found effective (preferably not to expensive haha). I am also wondering if there are any medications that have made a difference for you, I've had omeprazole, buscopan, movical and other laxo powders, currently trying Colofac. 

Secondly, if anyone suffers badly from fibromyalgia and has any tips, I suffer severe pain in feet, knees, hips, wrists and get bad costrochondritis. I take tramadol and solpadol but try desperately to avoid this as it flares my IBS too. If anyone has tips for pain relief and avoiding flare ups of fibro that would be helpful! 

Thanks all!! 

 God bless x

0 likes, 3 replies

3 Replies

  • jackie00198
    jackie00198 beth1999

    Posted

    Beth--I'm so sorry you're suffering with all these symptoms. Have you tried cutting out dairy? Or wheat? A lot of people can react badly to both. When I first got ME, I had a lot of stomach issues. Here's what hugely helped me. I was guided in the following by a knowledgeable nutritionist. I first went on an elimination diet. The first few days, I did get bad headaches and felt worse. Then I started feeling better. After this diet, I went on a 4-day rotation diet, where I didn't eat the same food in 4 days. You can Google both these diets.

    • beth1999
      beth1999 jackie00198

      Posted

      Thanks for replying Jackie!

      Yeh I know it's not dairy but I haven't tried wheat because I had a colonoscopy 2 years ago and they told me it's probably not like coeliac or anything but I think I need to do it again- just so hard when you're tired and want a quick and easy snack! But I will defineitly try both those diets and look into them!

      Thank you & I hope you're keeping well. 

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