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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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Weight loss and weight gain poll

Have you had weight loss or gain that cannot be explained by means unrelated to ME/CFS?

  • Very significant weight gain

    Votes: 30 24.0%
  • Some weight gain

    Votes: 17 13.6%
  • Insignificant weight gain or loss

    Votes: 17 13.6%
  • Some weight loss

    Votes: 11 8.8%
  • Very significant weight loss

    Votes: 30 24.0%
  • Significant fluctuations in weight

    Votes: 20 16.0%

  • Total voters
    125

alkt

Senior Member
Messages
339
Location
uk
i am constantly asked if i am hungry think it might actually be a good thing when i can answer yes . when i first got sick i lost two stone=28 pounds over the next ten years i very slowly regained it and over the last six lost it again. i actually miss having muscles even though they gave me pain all day every day. ha ! they still do although their is much less actual muscle tissue.
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
at the beginning of my severe relapse 8 years ago I lost a lot of weight - around 28lbs. I had an apetite and tried to eat to stop the weight coming off, but I couldn't stop the weight loss. three years in I started to gain weight back, then couldn't stop gaining weight. I am now 30lbs overweight so I regained the 28 I lost PLUS at least another 25 lbs or so.

I am always hungry and I cannot lose weight no matter what I do - even fasting, detox doet, cutting out sugar and carbs I don't lose. in fact everytime I try and change my diet to lose weight I gain a little more. Very distressing.
 

alkt

Senior Member
Messages
339
Location
uk
at the beginning of my severe relapse 8 years ago I lost a lot of weight - around 28lbs. I had an apetite and tried to eat to stop the weight coming off, but I couldn't stop the weight loss. three years in I started to gain weight back, then couldn't stop gaining weight. I am now 30lbs overweight so I regained the 28 I lost PLUS at least another 25 lbs or so.

I am always hungry and I cannot lose weight no matter what I do - even fasting, detox doet, cutting out sugar and carbs I don't lose. in fact everytime I try and change my diet to lose weight I gain a little more. Very distressing.
sorry to hear that but constantly changing diets can mess up the metabolism which is one reason why frequent dieters quickly regain weight.
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
sorry to hear that but constantly changing diets can mess up the metabolism which is one reason why frequent dieters quickly regain weight.

Thanks - but I haven't been frequently dieting or changing diets a lot - over many years I have tired a few different things - no ability to lose weight. in fact when I gave up sugar (not a diet or big change) I actually gained weight. And I didn't diet to lose weight in the first place - your post appears to infer that my metabolism doesn't work because of dieting, this wasn't what I meant at all. I naturally, without doing anything lost a lot of weight, then withoit doing anything else gained massive amounts of weight. tried a few simple things over the years to lose weight and all that happens is I gain more.
 

Firefly_

Senior Member
Messages
235
Location
Oklahoma, USA
I'm in justys boat. Lost 40 lbs rapidly at onset of illness then got started on a low dose of Dexamethasone, got up out of bed and was ravenous all of the time. Gained back the 40 and recently 10 more. Sometimes I feel like I've got something chemically lacking in my brain because I can eat till my stomach hurts and don't feel satisfied. I just stop when my plates empty but I'm always kind of picking. Especially at night. Have to severely limit my caloric intake to lose anything at all and that's not sustainable so for now just trying to keep the damage to a minimum.

Part of my problem too I think is boredom. Used to be always busy, so would forget to eat sometimes, now that's about the only thing I DONT forget lmao. :bang-head:
 

wonderoushope

Senior Member
Messages
247
Gain weight. My symptoms come in waves. So when I am at my worst, my appetite goes crazy. Uncontrollable hunger (gnawing feeling) that does not go away despite having hearty meals. This last episode I tracked my calories and forced myself to stay within calories, because I was putting on weight rapidly and I had already been through the episode before so knew what would happen. Even with strict calorie counting it was hard for weight not to go up, eventually symptoms died down and appetite went back to normal and went back down, but still very hard for me to lose weight. My weight wont budge below 70 kg though.
 

wonderoushope

Senior Member
Messages
247
One thing I have noticed is that when I am going through a flare-up with digestive issues, my weight fluctuates daily by a 1-2 kg (it's like this for a couple of months) and this is when I am eating really strict (so really shouldn't be fluctuating that much). I certainly am not losing any weight at this time. At this time the scale constantly changes, but when my symptoms die down, my weight stays the same on the scale every day (and I am not on such a strict diet and eating foods that would make more sense for weight on scale to change). I think it could have something to do with my cortisol levels. My cortisol levels would be much more elevated when a flare-up is happening (usually, I can't sleep at this time and have a buzzed on edge feeling constantly).

It's just strange, because I remember the last time this happening I was so stressed because my diet was "so clean" and yet my weight was going up and fluctuating. If I was eating the foods that I am eating now during a flare-up I would certainly put on weight.
 
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Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
Lower activity means I have a tendency to put on a bit of weight that I didn't have before - which I have to moderate with a calorie restricting diet occasionally. But I've been more or less in the 'healthy weight range' my whole life.
 

Lolinda

J'aime nager dans le froid style Wim Hof.. 🏊‍♀️🙃
Messages
420
Location
Geneva, Switzerland
Hi all on this thread,
Using a few tricks, I am now able to eat up to 4000kcal a day and up to 500g of meat. Here I posted all the details of what I do. Maybe some people on this thread can use one or another of the ideas. - As I struggled all my life with being underweight and not being able to eat enough, I am so so happy!! :)
 
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PatJ

Forum Support Assistant
Messages
5,288
Location
Canada
I think my ideal weight is around 150lbs. I was overweight (180lbs) around the time CFS/ME hit. Within a few years I was down to 140lbs. As my condition worsened, so did the weight loss until one summer I weighed 95lbs. I'm now 110-112 lbs and can't seem to go any higher, no matter what I eat. I'm bedbound much of the day and the only exercise I get is from walking around my house, I can eat high fat, high protein, high carb, and yet can't gain any weight.
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
I put insignificant weight loss or gain. I do weigh 40 lbs. more than I did when I got ME/CFS 31 years ago. I am assuming I would have gained the weight as I aged, even had I remained healthy. My mom did that and I have a physiology similar to hers.
 

arewenearlythereyet

Senior Member
Messages
1,478
I put significant weight gain. Before becoming ill I was 185 lb which is normal for my height (6"). Within 2 years I was 215lb since then (2 years) I have stabilised at between 203-215. I am overweight. I try to keep to an 1800 calorie restriction diet but can't seem to keep the weight off. I put on easier than I lose which I put down to overeating for my unpredictable and variable calorie burn. I have lost muscle mass but replaced this with body fat. I eat a healthy low sugar low processed food diet. I can put on a stone in 3 weeks if I eat say on average 2500 calories. Simple maths ....I can't move more so I need to eat less, but predicting my calories to do this is as variable as my energy levels. I don't do any "cardio"exercise other than gentle walking below my cardio threshold.
 
Messages
12
I am naturally quite skinny. Just before I got ill I was on a weight gain meal plan from my doctor, which was totally ineffective - but after my symptoms started I began to gain weight. I actually ended up gaining 10kg!! I really don't feel like me anymore, it's quite upsetting.
 

Wishful

Senior Member
Messages
5,740
Location
Alberta
I did manage to lose weight while trying out different diets, but that was clearly due to dietary change. My 'comfortable weight' seems to have remained the same.

I did experience weight gain before my problems started. I stopped the gain and reduced it a bit by simply eating less per meal. Then severe Type IV food sensitivity stuck, which resulted in CFS. A link there? Possibly.
 

mirshine

Senior Member
Messages
469
Location
Dublin, Ireland
I used to be fit and run 4 or 5 times a week. Now i can barely walk. I suppose considering I can do no exercise I haven't put on a ridiculous amount of weight but I'm still a lot bigger than I was. I don't feel good about it at all.
 

overtheedge

Senior Member
Messages
258
I have gained weight from this illness but in an unexpected way. I found that powdered nutrients of any kind but especially protein powders relieve my symptoms so I started taking four scoops of whey protein per day and on some days eating protein bars instead of taking the powder as an experiment though the bars never did anything for me. i ended up gaining 20 pounds in a month. something to note if you want to try something like this to gain weight, high levels of protein can be difficult for your liver and kidneys to process so if you have problems with either of these organs steer clear. I still take powdered nutrients of one kind or another on days where I'm not testing some sort of supplement and still get good effects from them, wonder if it means my gut has absorption issues.