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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. F

    Total loss of appetite & weight loss

    Thank you kangaSue - that is another interesting option to explore, particularly as my appetite returned for a few weeks which happened to be around the time I had the endoscopy. Also the one 'good' day when I can manage a small meal being followed by a day when I can't eat anything much at all...
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    Total loss of appetite & weight loss

    Thanks a lot, everyone. I really appreciate your input. I think in this case there is a direct cause to the weight loss, and that is loss of appetite and therefore reduced food intake. My query really is whether a totally new side effect like this can appear, after 11 years on a medication? My...
  3. F

    Total loss of appetite & weight loss

    Thanks, Pat. That definitely sounds worth investigating, although the irony is that I was on omeprazole to lower my stomach acid for years until a few months ago. I stopped them before the endoscopy and realised that they were making absolutely no difference and so never started taking them...
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    Total loss of appetite & weight loss

    The food diary is another great idea Trish, so thanks again. Am pretty sure am managing to get enough fluids though, which you're right is so important. As for the cyclizine, my doctor is reluctant to prescribe it at all and has stressed that I should only take it when the nausea is really bad...
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    Total loss of appetite & weight loss

    Hello Trish, Thanks for your kind reply and I'm sorry you too suffer similar symptoms. I do try to snack on crackers at least once a day but often can't even manage a cup of tea let alone soup or nutritious flavoured drinks - I feel absolutely repulsed by the thought. Mostly I sip hot water or...
  6. F

    Total loss of appetite & weight loss

    Hello, I've never posted before, but am desperate and wonder if anyone can offer some advice? After almost 20 years with CFS/ME I have developed a new symptom - total loss of appetite, to the point where I have lost 35lbs in the last few months. I was carrying a little extra weight to start...