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Weight Loss with CFIDS/ME

Posted , 5 users are following.

boni333
boni333

I was dx'ed with ME in 1993. I was bedridden for 3 yrs. Since then I've changed everything about me and was taken out of work. I'm not bedridden any more but I'm down more then up. I never had the symptom of weight loss, in fact I gained 150 lbs from not being active. I had surgery for the weight gain and lost all of it. Of course I did gain back but nothing like before. Now in the last month I'm losing weight for no reason. I haven't changed anything. I also noticed I was sweating alot for no reason to

Does anyone have this symptom? I think everything is ME but I'm not sure with this.

0 likes, 10 replies

10 Replies

  • lau188
    lau188 boni333

    Posted

    Hi boni, I have ME and since becoming really unwell with it I have lost about 1 stone, I am less active now but the weight seems to drop off me. I also get hot sweats throughout the night, I'm 22 so I know it's not the menopause! I think the sweating is common with ME but not sure about the weight rolleyes x
    • boni333
      boni333 lau188

      Posted

      I've seen one of the symptoms is weight loss. I had this 25 yrs and never had this. I gained. I think I saw that the illness keeps changing and I'm hoping that's what it's. I looked up illnesses with weight loss and I don't want that! I'm going to the doc at the end of March and I hope to know then.

      Thank you for getting back to me, it makes me feel better. Of course I'm sorry your sick and I wish we weren't. Thanks

  • sandy53965
    sandy53965 boni333

    Posted

    Hi Boni,  my husband was six feet, one inch and weighed only 140 when he first got sick.  He was too thin for his hieght.  But after being bedridden for about two decades, he of course gained quite a bit (over a hundred pounds).  He can't lose no matter what he does, and is still housebound and down 90 percent of the time.  So I don't know the answer to the weight question but I can tell you, he sweats a LOT, especially when he tries to get up and do things.  Many times it's a "cold sweat with claminess" which seems to happen pretty much whenever he exerts himself.  It used to happen any time he was in an upward position, sitting or standing.  But now it only happens if he tries to do anything other than resting.

     

    • boni333
      boni333 sandy53965

      Posted

      I gained 150 lbs after I got sick. I was in active and could do anything but lay in bed or the couch. I couldn't lose it for anything we figured I'd have to eat only 750 calories a day and I'd lose it. I sweat like your husband and it was awful. 2003 I had weight loss surgery and lost all the weight I gained and then some. Since then I gained back about 60 lbs. I'm no where near where I was and all my other problems are gone. GERD, high blood pressure, hyatal hernia...so I'm happy. But since June I've lost 25 lbs and I'm eating the same and of course not exercising. The sweat comes out of every pore..even my hands. This happens when I'm sitting and resting. It could be menopause, I'm. 61. But I don't know. There are people with ME that lose weight but I never had that. I'm scared it's something serious. I will see my doc in March if it gets worse, I'll go before that. I'll keep you all posted. Thanks.
  • jackie00198
    jackie00198 boni333

    Posted

    With all the possible symptoms of ME/CFS, it's very hard to sort out what's part of the illness and what needs to be checked by a doctor. When I first got ME/CFS, I lost a lot of weight, but I'd also lost my appetite and wasn't eating a lot. If your weight loss is significant and unexplained, it might be better safe than sorry. You might want to see a doctor, preferable an ME/CFS specialist.
    • boni333
      boni333 jackie00198

      Posted

      Thanks Jackie. I'm going to see my Dr. in Match. I'm hoping it's CFIDS/ME. I looked up what it could be on line and there are alot of illnesses with these symptoms, all of which can be serious. The one thing is I don't have any of there other symptoms. So I agree, better safe then sorry. If it gets worse in the meantime, I'll go sooner. I don't know where you are but I'm in the US and we're not as advanced here like other countries. I don't like talking about this illness with my Dr even though he thinks there's something to it, so he might believe.

      I'll let you all know how it turns out. Thanks again.

    • jackie00198
      jackie00198 boni333

      Posted

      I'm also in the U.S., in the Los Angeles area. There's several U.S. doctors and researchers who are at the forefront of ME/CFS research. There's Dr. Cheney in North Carolina, Dr. Klimas in Florida, Dr. Lapp, Dr. Lipkin, Dr Chia (in Los Angeles), Dr. Montoya at Stanford. The list goes on and on. So I don't think we're less advanced than other countries. But that still isn't saying a lot. There needs to be more research and public awareness of ME/CFS throughout the world.

       

    • boni333
      boni333 jackie00198

      Posted

      I'm in New York...upstate on the Canadian border.  Dr. Cheney had his office about 100 miles from me...I knew he moved but I thought he was retired.  Maybe he's still active in CFIDS and just retired from his medical practice.  I've been following alot of the doc's you mention.  I've been sick since 1993 and read alot of what they have been doing.  My first doc was Susan Levine, in Manhattan, she was on the the board with the CFIDS Assoc for years..  I lived outside Manhattan and could see her.  But when I lost my job, home and everything I had to move away...I couldn't afford to live there once I left my job..  so I haven't seen her in years.  And I don't see anything from her from the Assoc.   Now that I live up here on the border I've talked to doc's in Canada and got a much better response from them.  They always called it ME and it is more accepted there.  I've heard the same thing with the UK.  We in the US are still fighting for acceptance in the illness, let alone research.  We do have some great researchers in this country and they are dedicated... and I"m so grateful for all they do.  We're just getting reconized with the CDC and the NIH in the last 10 yrs... but there was a time when $5 million dollars was given to the CDC for research on this illness and they spent it on other diseases.  Thank God for the Assoc. they were watching and blew the whistle on them.  Since then I've seen alot more positive views on this... finally.  We are making progress and I hope we all can find what we need to get better.  

      We're in this together.  Thanks for your message

    • jackie00198
      jackie00198 boni333

      Posted

      It sounds like you're very well informed. I remember when that money earmarked for ME/CFS within the CDC was spent for other illnesses. That was truly infuriating. I highly recommend watching a new film that has just come out: "Forgotton Plague" (not to be confused with The Forgotten Plague, which is about tuberculosis). It can be viewed on ITunes, Google Play, and Amazon.
    • boni333
      boni333 jackie00198

      Posted

      Thank you I will watch it.  I haven't been active in the CFIDS community for a while.  I overwhelmed myself trying to get answers in the beginning that I gave up.  I'm not up on what's going on...so learning about this film is something I want to see.  Thanks
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