The Power and Pitfalls of Omics: George Davey Smith’s storming talk at ME/CFS conference
Read about the talk that stole the show at a recent ME/CFS conference in Simon McGrath's two-part blog.
Discuss the article on the Forums.

Have you lost, gained or stayed the same weight?

Discussion in 'General ME/CFS Discussion' started by Kyla, Mar 28, 2015.

?

Since the onset of illness my weight has:

  1. Decreased more than 10 pounds

    10 vote(s)
    19.2%
  2. Decreased less than 10 pounds

    2 vote(s)
    3.8%
  3. Stayed the same

    4 vote(s)
    7.7%
  4. Increased less than 10 pounds

    4 vote(s)
    7.7%
  5. Increased more than 10 pounds

    18 vote(s)
    34.6%
  6. has fluctuated over time

    14 vote(s)
    26.9%
  1. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

    Messages:
    721
    Likes:
    4,222
    Canada
    I am curious because some diagnostic criteria (CCC and ICC) have "weight changes" as a symptom, while some others don't and a bunch of ME or CFS guides consider it a "red flag" or exclusion.
    Wondering what the norm is, or if this is maybe a subgroup thing?
    I hope this isn't too personal as some might be sensitive about body changes, but there is no judgement here, just want to know if this is a symptom.

    I have personally lost 20 pounds in the past year (and I am certainly not trying - haven't been able to do anything that might qualify as exercise in quite some time)
    For me the weight change didn't start until a while after my ME onset, and tends to ramp up with POTS flares
     
    barbc56 likes this.
  2. barbc56

    barbc56 Senior Member

    Messages:
    3,652
    Likes:
    5,006
    Very interesting, as I have also lost 20 pounds since last March.

    Mine is most likely due to another health problem that started at the same time. Like you, I was not trying to lose weight.

    I had always been skinny, weighted 92 pounds twenty years ago but gained another 15 pounds over the years before getting sick.. I am only five feet tall.

    However since getting sick, I've gained another twenty pounds possibility due to medications and inactivity.

    I'm now only two pounds heavier than what it says on my drivers license. I was too embarrassed to change that.:lol:

    Barb
     
    Kyla likes this.
  3. PennyIA

    PennyIA Senior Member

    Messages:
    719
    Likes:
    1,663
    Iowa
    I know the first time I was bedridden I rapidly gained 20 pounds. It didn't change much until I went into remission... dropped the whole 20 pounds without even trying. I gained back 10 pounds this last time I crashed.
     
    Kyla likes this.
  4. ahmo

    ahmo Senior Member

    Messages:
    4,340
    Likes:
    6,528
    Northcoast NSW, Australia
    I initially lost, too much, and had difficulty regaining. Prior to this, I'd had to eat carefully and exercise to maintain my weight. During the past 3 years since I began GAPS diet, methylation protocol, and stabilized on the correct form of thyroid, I seem to have settled on an appropriate weight.
     
    Kyla likes this.
  5. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

    Messages:
    721
    Likes:
    4,222
    Canada
    This is very interesting! Not sure if it is only people with weight change who might be more likely to reply, but it certainly seems like drastic weight change can be a symptom
     
    WillowJ and Gingergrrl like this.
  6. Revel

    Revel Senior Member

    Messages:
    406
    Likes:
    2,447
    I used to weigh 120 pounds. Now I am static at 90 pounds and have been for about a decade.

    I have had ME/POTS for over 40 years and used to lose weight with every relapse, but I was always able to regain most of it each time my health improved.

    This dramatic weight loss was sudden and coincided with a worsening of POTS symptoms. I don't think I have managed to gain more than 2-3 pounds since then. It takes a huge effort to do so and then I will lose this tiny gain practically overnight for no apparent reason - so frustrating!
     
    Kyla and Gingergrrl like this.
  7. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,416
    Likes:
    24,340
    USA
    When this all started I weighed in the 130's (which was too much for my height) and I had tried to lose weight my whole life. I currently weigh around 106 and struggle to maintain it b/c with ME/CFS I am never hungry and have so much shortness of breath that it is hard to eat. I also tend to feel worse after I eat (very full and even worse breathing.) Now with recent allergies to food dyes I am fearful to eat that I may get an allergic reaction which adds a new factor. I am only 5'0 so this weight is good for my height but I have absolutely zero muscle and am incredibly weak.
     
    Kyla likes this.
  8. August59

    August59 Daughters High School Graduation

    Messages:
    1,617
    Likes:
    624
    Upstate SC, USA
    Most of my weight fluctuation was due to different medications that I have been placed on in the past 9.5 years since becoming ill. I was around 205 lbs. at onset and gained up to around 225 lbs. I'm now at 198 lbs and I contribute this medication discontinuation and a "carb watching" (not calories) diet. I would like to get down to 185 lbs., but that will not happen unless I become more active and boost my metabolic rate. Main reason for wanting to drop more weight by increased activity and boosting metabolic rate is to decrease fat in my "fatty liver"
     
    Kyla likes this.
  9. daisybell

    daisybell Senior Member

    Messages:
    1,601
    Likes:
    7,362
    New Zealand
    I've gained, partly due to thyroid issues and partly due to inactivity. I'd love to lose a few pounds, but can't shift them.... Well, I probably could if I ate practically nothing but funnily enough that thought doesn't appeal! My metabolic rate feels very low.
     
    Kyla likes this.
  10. Tammy

    Tammy Senior Member

    Messages:
    1,070
    Likes:
    1,401
    New Mexico
    Initially........I lost about 20 pounds...... was around 93lbs at my worst. I gradually overtime regained a healthy weight...........although now I probably need to shed some pounds.
     
    Keela Too and Kyla like this.
  11. Keela Too

    Keela Too Sally Burch

    Messages:
    900
    Likes:
    3,985
    N.Ireland
    Initially I lost weight quite rapidly... but I wasn't too sad with that, as I'd gained a few pounds over the preceding years. Now that my appetite has returned, and my activity levels been lowered so much, I've regained a few of those pounds.

    I'd rather stay at this fairly optimum weight for me, so am making a determined effort not to put any more weight back on.
     
    Kyla likes this.
  12. SOC

    SOC

    Messages:
    7,802
    Likes:
    16,462
    Initially I gained a lot of weight, then when my energy improved I started losing weight even though I didn't change my activity level or eating habits. Later, I became somewhat more active and started eating more and continued to lose weight.

    I may be different than others in my weight gain/loss pattern because I don't have GI issues, so eating and digestion has never been a problem for me. I suspect my problem was more an energy production problem. My body was not using the energy from food, just storing it as fat. Even when I ate very, very little I didn't lose weight and sometimes gained a bit. My current guess is that high-dose CoQ10 (among other things, no doubt) may be allowing my body to better utilize energy from food so I'm losing weight even though I'm now consuming more calories.
     
    Kyla likes this.
  13. daisybell

    daisybell Senior Member

    Messages:
    1,601
    Likes:
    7,362
    New Zealand
    That sounds much like me! I am currently retrying CoQ10, so fingers crossed it might help me to lose those few extra pounds! Plus on days when I feel worse, I am sure I retain fluid as I am nearly always heavier. When I have a good day, my weight is usually down a bit again...
     
  14. redviper

    redviper Senior Member

    Messages:
    145
    Likes:
    265
    I was in the best shape of my life when I was struck with the viral illness, so I have certainly gained 25-50 pounds (depending on the time of the year) since the onset of my illness.

    My body is ravaged with pain so it makes exercise or any sort of physical exertion difficult, but it's something I can at least tolerate and occasionally push through during the summer.
     
    Kyla likes this.
  15. rosie26

    rosie26 Senior Member

    Messages:
    2,407
    Likes:
    5,133
    I lost close to 25 pounds (11kg) at severe onset. I have not regained it entirely back yet.
     
    Kyla likes this.
  16. Ruthie24

    Ruthie24 Senior Member

    Messages:
    201
    Likes:
    415
    New Mexico, USA
    When I first became ill, I lost 20 lbs rapidly, without trying. Stayed that way with small increases that came with remissions. Unfortunately I have gained 25 pounds since last fall and keep gaining despite all my attempts to stop it or lose the weight.

    It's ironic because I started doing a little better around that same time and have been slightly more active. My sleep has also improved in that same time frame but my GI symptoms have gotten worse. All of those seem like they should be helping me lose weight, not gain it. Very Frustrating!!
     
    Kyla likes this.
  17. Richard7

    Richard7 Senior Member

    Messages:
    536
    Likes:
    956
    Australia
    I had real problems with dysbiosis right from the beginning and put on about 9 or 10 kilos in the first six months and kept going to about 127 (a gain of 18 kilos) I then had an improvement that got me down to about 121 or 122 or something and then things got worse when I was on sandomigran (for migraine) and I don't even know where I topped out.


    I have lost some weight since and am somewhere in the low to mid 130s. I eat when I want to eat and eat as much as I want to eat and it seems to average out at about 1700kCal and I appear to be on a gradual downward trend.


    Of course the absolute measurements are not very useful when you are comparing people of very different sizes, I have gone from about 15 or 16% bodyfat to about 32%.
     
    Kyla likes this.
  18. Keela Too

    Keela Too Sally Burch

    Messages:
    900
    Likes:
    3,985
    N.Ireland
    That is an interesting observation actually... I usually step on the scales most mornings (just a habit I have) and my weight fluctuates by up and down by a few pounds. I've never thought about how these daily changes could be related to fluid retention, how I feel, and perhaps even be an indicator for PEM .... definitely food for thought I think!

    Good observation Daisybell!
     
    Kyla and daisybell like this.
  19. eafw

    eafw Senior Member

    Messages:
    816
    Likes:
    3,397
    UK
    I've lost over a stone and a half (*) since being poorly - most of it muscle as there wasn't much fat there to begin with. Now very underweight and struggle to maintain it. Would be one of the markers of recovery for myself, if I were to able to build muscle again.

    (*) = over 20lbs / ~10 kg
     
    rosie26 and Kyla like this.
  20. lansbergen

    lansbergen Senior Member

    Messages:
    2,505
    Likes:
    2,710
    First I became skin over bone. After I started to take the immune modulator I got fat. When I had improved enough my belly started to shrink and still does.
     
    Kyla likes this.

See more popular forum discussions.

Share This Page