Weight loss worries?

Posted , 6 users are following.

Okay, so i've had this condition for years now although only recently had an almost diagnosis. It's taking time, as you all know too well!!

I'm concerned though that something else may be wrong. I've had so many different blood tests etc and nothing every really flags up, but i've been steadily losing weigh now for a year or with no real explanation as to why. I don't eat alot, but i don't eat healthy 24/7 and do very little excercise due to my fatigue and pain. Everyone i speak to says that weight gain is more common in M.E/CFS cases. Has anyone with these conditions every experienced weight loss for no real reason, and should i mention it to my GP?

Thanks lovelies smile

0 likes, 4 replies

4 Replies

  • Posted

    It was weight loss that finally flagged up a referral to a neurologist for me. I went down from 9st to 6st 12lbs. I would deffo tell your GP to rule out any other reason such as thyroid, diabetes and the like.

    My weight has stabilised now that I eat gluten free and take a good probiotic in addition to other supplements.

  • Posted

    Thanks for asking this question, I just asked this too. I was dx'ed in 1993 and I was bedridden for 3 yrs. One I got changed my lifestyle and rest I was able to get out of bed with alot of limitations. Since I was so inactive and had to stop exercising I gained alot of weight! In 2003 I had weight loss surgery and lost all the weight I gained and then some. I have gained back some of the weight but not all of it, thank God. We knew I would I'm still inactive. So now I'm about 25 lbs over weight but I'm OK with it, it's 150 over.

    Over the last 6 months I'm losing weight and I'm not doing anything to try and lose it. It's a complete turnaround. And I thought something else was going on like my thyroid. I found out the weight loss is a symptom of CFS/ME. But in 20 something years I didn't have til now. I have also heard that symptoms change over the years. So for now I'm letting things go and chalking it up to this illness. If it's something else something will let me know.

    Also, one of the markers to DX this illness is all blood tests are negative. It's frustrating and can drive you crazy, but it lets us know we have this.

    Hope this helps


  • Posted

    Unexplained weight loss should always be mentioned to your doctor. I did experience weight loss in the early years of my ME/CFS, but I was also having loss of appetite. Now, for the first time in my life, I've gained weight and am actually overweight. Not good!
    • Posted

      Yes it should always be brought to the doc's attention. And it opens up having alot of tests which hopefully come back negative. It's a marker for a DX. We have to eliminate all other illnesses our symptoms could be. I don't want this illness but its better then having a thyroid problem. When I was getting a DX for the doc I was tested for all kinds of illnesses that have my symptoms. At the time I hadn't heard anything about CFS. I really thought I was crazy and my symptoms were all in my head. When they tested me for MS I was praying it was positive so I could put a name to it. And it would prove I wasn't crazy. It was negative and I was so upset. When I was dx'ed I was happy to put a name to it and thought it's not that bad, it's not MS. That was before I knew how horrible this was and how unaccepted this illness was. That's a whole other story lol


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