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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Dealing with weight gain

HopingSince88

Senior Member
Messages
335
Location
Maine
Rapid Weight Gain Here Too

I gained a significant amount of weight during the first few months of illness. I don't remember the specifics, but I think I gained around 50 lbs within just a couple of months, then went on to gain an additional 30 lbs over the following 6 months. Like so many here, I was an active and athletic person, with many activities/sports, etc...prior to becoming sick. And my eating habits did NOT change.

About 2 years ago I went to a personal trainer. I signed up for The Body Bug, which is an electronic device that measures sweat, pore size, pulse, activity level, and maybe more...I forget :p

In any case the device allowed you to download to a website your activity levels, and there was a log for adding what you ate each day. On average I was eating 1100 calories (low carb, protein adequate, no white diet) and was burning approximately 2400 calories a day through activity. After 4 months I had not lost any weight, so I gave up. I should have been losing about 3 lbs a week.

My weight gain coincided with the sudden onset of my illness. It was like a switch going on (or may be off). I have had my thyroid checked every year for the last 21 years...and that is not the problem. I was taking no meds. I am very certain that my weight gain is due to whatever is causing my other CF symptoms. My primary symptoms are fatigue (sudden onset), short-term memory loss (which was also sudden), weight gain (sudden), and sleep disorders (also sudden onset).

The only real diagnosis I have had is for adrenal insufficiency, for which I took DHEA for about a year. It helped to get my adrenals working a bit, but they are no where near normal.

Getting back to the weight issue, I too avoid mirrors and glass. It is just too painful to be reminded of how awful I look. I have missed every class reunion. When I see someone that knew me when I was healthy (and slim) I avoid making eye contact and try to walk the other way. I feel such shame about this aspect of CF.

I have to admit that before CFS I thought that anyone who was heavy was just being lazy, or was gluttonous. CFS has changed my attitudes about all that. I have become a much less judgmental person, and I always remind myself to 'walk a mile' in someone else's shoes before forming any kind of negative opinion.

I am curious for those of you that have had larger amounts of weight gain, whether you have an 'apple' shape, as do I. I have great concern about the implications for this weight distribution (heart disease, stroke, diabetes...)
 

Kati

Patient in training
Messages
5,497
Hoping since and all the other ones, I can relate to your stories. I am likely an apple shape by now- the skin is getting thicker by the minute and I am ashamed of it, don't like it, and can't work it out. I don't know if I mentioned it here, but if one were to see a new doctor, they'd say it's not hormonal, it's a matter of eating right and exercising. Sheesh, I wish I could exercise it all! Biggest loser, wait for me!!

I am certain there is a metabolic process happening for all of us. The switch is on you lose/ the switch is off, you gain. Add to that thyroidd issues, adrenal issues, mitochondrial issues- A lot can go on. Add to that inactivity. To me, I am guilty of being in my appartment where there is a fridge at sight at all time. I don't eat bad and I don't think my serving sizes are out of this world. But the weight keeps on creeping on me. My meds have been the same all that time, so can't blame it on the meds.

I really wish there was a good explanation from the scientists about what's going on. I also wish a magic pill to make it all go away...( OK, if I had the opportunity to make it go away by exercise, I'd take it too, but with OI and PEM, it is just not possible)
 
D

Denn

Guest
[
Getting back to the weight issue, I too avoid mirrors and glass. It is just too painful to be reminded of how awful I look. I have missed every class reunion. When I see someone that knew me when I was healthy (and slim) I avoid making eye contact and try to walk the other way. I feel such shame about this aspect of CF.

I have to admit that before CFS I thought that anyone who was heavy was just being lazy, or was gluttonous. CFS has changed my attitudes about all that. I have become a much less judgmental person, and I always remind myself to 'walk a mile' in someone else's shoes before forming any kind of negative opinion.

I am curious for those of you that have had larger amounts of weight gain, whether you have an 'apple' shape, as do I. I have great concern about the implications for this weight distribution (heart disease, stroke, diabetes...)[/QUOTE][/QUOTE]
Hoping--

Ditto on the "apple shape" for me. Also, I share your health concerns--especially since exercise is simply not on the agenda right now. I am of an age ;) where these concerns are a bit more pressing. The only good thing is that, most of the time, my depression keeps me from really caring about it! (For the record, my depression came after the onset of the illness and did not cause it!!!) :)

Happy New Year!
Denn
 
S

samatk

Guest
i need to lose weight

I need to lose weight but am conscious that going on strict diets can stress immune system.. also need to eat balanced diet. Does anyone have any experience of things like Slimming World for example? or have any other advice? Idon't have any food intolerances that I'm aware of and mild IBS which is more activated by stress than diet things I've noticed over the years! Can't eat more than one grape though for all that whichis a pity cos I like grapes...

thanks

Samantha:confused:
 
Messages
12
Hi,

I'm new to this forum but not new to illness. I have not been diagnosed with CFS. I'm from Australia and have been diagnosed with POTS -- a form of dysautonomia -- (three years ago -- but have had signs of it all my life and was misdiagnosed for nearly 2 decades with 'Panic Disorder.") I have the symptoms of CFS but to get a doctor in Australia to diagnose it is very hard -- such a stigma of being a 'made up illness.' My weight has increased enormously. I'm not sure that I'm apple shaped (does that mean that your middle is bigger than your chest and hips as my waist is a bit smaller). My measurements are now 46 - 36 -42. I only found out my measurements the other day as I had to be measured for a dress I'm having made. Needless to say, meausring so big was just another kick in the teeth delivered by this illness. At times it seem to take just about everything from us.

I too feel ashamed of being so big. Which on one hand strikes me as ridiculous as if this was my only health problem I'd be so relieved. My other symptoms are so much worse but the weight gain still bothers me a lot. I'd be a happier ill person if I was normal weight than I am at this weight.

Geeze, brain fog is doing it's thing today. I was about to sign off 'Love, Deb.' LOL.
 

klutzo

Senior Member
Messages
564
Location
Florida
I do not think it's vain for us to be concerned about this, as it does have serious health risks.
I was still premenopausal when I became sick and gained 46 lbs. in the first two months, so it just made me into a larger hour glass shape.

It was only after going through early menopause at age 44 that I became apple shaped. Before getting sick, my waist was 23 inches. After gaining that rapid 46 lbs. it was still only 27 inches at 5'7" tall. During menopause, it jumped to 41 inches without any additional weight gain! It moved from my thighs to my stomach. I immediately developed high blood pressure and borderline high blood sugar.

A fat middle is very dangerous and increases the risk of all diseases. From what I've read, the fat around the middle is actually like having an extra endocrine gland that puts out bad hormones.

Fat below the waist only increases the risk of arthritis of the knee and that is all. In fact, contrary to our societal prejudices, women who are slightly overweight and bottom heavy live longer than thin women on average.

BTW, I made myself exercise through all of this, causing 3 leaky heart valves, cervical disc disease and lumbar stenosis in the process of pushing myself too hard. I watched my diet, but discovered I could not lose unless I ate less than 900 calories per day, in which case my hair would fall out and I would become too weak to function.

I had no trouble with disbelieving docs because my husband and I go to the same docs and go in to the exam room together for our appts. He would tell them how I am the most disciplined person he knows and do not overeat and how I exercise regularly, so they could not pull that stuff with me. Instead, they blamed it on genetics, since I am now built exactly like my mother was.

I am slightly hypothyroid, due to fibro, but it is under good control with a small amt. of medication.

I agree that something is basically wrong with our metabolisms in this disease. The very first alternative practitioner I ever went to, 2 yrs. into my illness, was a TCM doctor, who told me that my whole problem was that my metabolism was too slow to get toxins out of my body fast enough to avoid being damaged by them. His acupuncture didn't help me, but I still agree with his conclusions, and here I am 22 years after I saw him, much sicker and much poorer for all the things I've tried to fix it.

klutzo
 

Victoria

Senior Member
Messages
1,377
Location
Melbourne, Australia
Klutzo,

your experiences are similar to mine.

After being incredibly skinny (for the first 30 years of my life), I am now apple shaped too :(.

I have been tested, no thyroid problems (despite all the symptoms) - just slow metabolism (supported by slow rate of barium & follow through test in 2004).

I lose about 4-5 kilos if I stick to grain/dairy free, but now that I cannot exercise, I am getting really flabby around the rear end, but my arms are still skinny.

I might add that even when I did 10 hours of power walking each week, did 30-40 minutes of stretching, toning & back exercises daily, I still weighed the same - just better aerobic fitness & very strong & flexible.

Unless you have severe health problems or the weight exacerbates your symptoms, I suggest the best way to deal with the extra weight is "learn to live with it". I hate looking in a full length mirror these days, so try NOT TO LOOK.

Besides I was trim, taunt & terrific once, so I live on those memories. My face is very, very thin now - almost gaunt. If I lose weight, I look terrible,

If you have a healthy diet, be happy with that. Serve slightly smaller servings or only eat what a smaller plate holds. Cut the carbs. Eat more lean protein.

The more you try to reduce your calories & food intake, the more your body thinks it's starving & tries to hang on to the extra weight.

I used to be a very slim, trim 57 kilos, now I am 90 kilos, but with my height & slim face & arms, I don't look as large as a shorter person (with a plump face & arms). I try to wear dark colours & slimming clothes too.


PS. I never had a 23inch waist - mine was always 26inches. I have a large frame with broad shoulders & broad hips - was never "pencil stick" thin. I always had shape.
 

xlynx

Senior Member
Messages
163
Location
London, UK
I have now had CFS for 6 months. In this time I have lost 12kg. I was 90 kg now sitting at around 78kg. Not sure if I will start piling it back on soon. I have lost a bit of muscle in my legs so that could be the weight that I have lost. Who knows.

Hi da_foles, I am also a weight loser, did you manage to ever find a way to put it back on?
 

coxy

Senior Member
Messages
174
i seem to put on weight when i'm doing more exercise or doing more generally, the exact opposite of what used to happen pre me/cfs. i've recently started trying to do the yoga exercises on the wii fit, just to try and tone up a bit. Everytime i weigh myself on there i have put weight on! In the summer when i was doing very little on holiday i actually lost about 14Lbs. i am completely confused as to what to do, i'm certainly not going to put myself through exercise and lack of energy afterwards to PUT ON WEIGHT!!!
 

talkingfox

Senior Member
Messages
230
Location
Olympia, wa
I've had a really nice (for me anyways) recent side effect of the methyl b and CoQ10 I've recently added to my protocols. It's killing my appetite dead, which means I can stay at 1200 calories a day or less without too much effort and I'm actually starting to drop body fat. I don't go by the scales usually, rather body fat to lean mass ratios. :)

And I feel ya Klutzo. I've always had to eat like a bird and train like a thoroughbred to take off any fat at all, even during phases of mostly remission.
 

Sunday

Senior Member
Messages
733
I'm one of those people who lost weight on this, something happened that, whatever I ate, however I ate, I still lost weight and I was still nauseated. I've been on Freddd's active B12 (methylb and adenosylb and cofactors) for three months now. I had nausea constantly for about 2 months of the protocol. Now I have only occasional nausea, and I actually gained some weight.

Having been a person who's always battled weight gain pre-CFS, it's been interesting to go through this. I was actually pleased to see the weight drop off for awhile, but I was getting to the point where I didn't have much extra left, and I was scared about what would happen if I kept losing weight; I couldn't seem to help losing weight. I admit to being vain enough to be glad that, if I was a floppy drooping brainless thing, at least I had a reasonable shape. Vanity's a strong power.

This new state has only been going on for a few weeks, so I'm not sure what's happening. I seem to be maintaining weight, maybe gaining a little from the food fest I am having since I'm no longer nauseated all the time. I am doing a little more exercise, and it is helping my muscle tone, but doesn't otherwise seem to make much difference (except that I'm so happy to be able to be outside sometimes). But I'm still on TINY bits of yoga and walking, a 15-20 walk is long for me, even at a gentle pace, and something I have to rest up after. But I'm not crashing for the day or two or three after, as I used to.
 

kat0465

Senior Member
Messages
230
Location
Texas
KLUTZO,
i never thought thatthe pushing it thing would maybe cause the heart thing, but im havin major heart problems now.
i pushed myself to work,( and im talking Physical labor) up until a year and a half ago. i honestly dont know how i worked that long, but now my heart os goin wacky! murmers, chest pains and edema. so ill be seeing a cardiologist in febuary.
although i knew i had a slight thickening Mitral valve, this has got to be something more major that that.

How long were you sick before the heart stuff kicked in?? i've been sick almost 20 years now, but the last 6 months have been a rapid down hill slide.

And the Dr's just keep pushing the exercise:(
Kat
 
K

_Kim_

Guest
This was emailed to me today

Recently, in a large city in France, a poster featuring a young, thin and tan woman appeared in the window of a gym. It said:

"This summer, do you want to be a mermaid or a whale?"

A middle-aged woman, whose physical characteristics did not match those of the woman on the poster, responded publicly to the question posed by the gym.

To Whom It May Concern,
Whales are always surrounded by friends (dolphins, sea lions, curious humans.) They have an active sex life, get pregnant and have adorable baby whales. They have a wonderful time with dolphins stuffing themselves with shrimp. They play and swim in the seas, seeing wonderful places like Patagonia, the Bering Sea and the coral reefs of Polynesia. Whales are wonderful singers and have even recorded CDs. They are incredible creatures and virtually have no predators other than humans. They are loved, protected and admired by almost everyone in the world.
Mermaids don't exist. If they did exist, they would be lining up outside the offices of Argentinean psychoanalysts due to identity crisis. Fish or human? They don't have a sex life because they kill men who get close to them, not to mention how could they have sex? Just look at them ... where is IT? Therefore, they don't have kids either. Not to mention, who wants to get close to a girl who smells like a fish store?
The choice is perfectly clear to me: I want to be a whale.

P.S. We are in an age when media puts into our heads the idea that only skinny people are beautiful, but I prefer to enjoy an ice cream with my kids, a good dinner with a man who makes me shiver, and a piece of chocolate with my friends. With time, we gain weight because we accumulate so much information and wisdom in our heads that when there is no more room, it distributes out to the rest of our bodies. So we aren't heavy, we are enormously cultured, educated and happy. Beginning today, when I look at my butt in the mirror I will think: Good grief, look how smart I am!.
 

coxy

Senior Member
Messages
174
Did you find your weight lose suddenly started, did you put on weight when you first got ME? Only my daughter put on quite a lot of weight as the years went on even though she didn't much of an appetite, then suddenly 7 years into the ME she's lost nearly 3 stone in a year! She weighs 8.5 stone now and her height is 5ft 5. She is still a safe weight i guess, but looks so thin compared to what we were used to, i'm scared it's going to keep going down!! She hasn't changed her eating habits or her activity level (which is very low for a 15 yr old girl). I don't wanty to make a big thing about it, but not sure what to do?
I'm one of those people who lost weight on this, something happened that, whatever I ate, however I ate, I still lost weight and I was still nauseated. I've been on Freddd's active B12 (methylb and adenosylb and cofactors) for three months now. I had nausea constantly for about 2 months of the protocol. Now I have only occasional nausea, and I actually gained some weight.

Having been a person who's always battled weight gain pre-CFS, it's been interesting to go through this. I was actually pleased to see the weight drop off for awhile, but I was getting to the point where I didn't have much extra left, and I was scared about what would happen if I kept losing weight; I couldn't seem to help losing weight. I admit to being vain enough to be glad that, if I was a floppy drooping brainless thing, at least I had a reasonable shape. Vanity's a strong power.

This new state has only been going on for a few weeks, so I'm not sure what's happening. I seem to be maintaining weight, maybe gaining a little from the food fest I am having since I'm no longer nauseated all the time. I am doing a little more exercise, and it is helping my muscle tone, but doesn't otherwise seem to make much difference (except that I'm so happy to be able to be outside sometimes). But I'm still on TINY bits of yoga and walking, a 15-20 walk is long for me, even at a gentle pace, and something I have to rest up after. But I'm not crashing for the day or two or three after, as I used to.
 

jewel

Senior Member
Messages
195
To Kim-- You beat me to posting this vignette about the whales vs. mermaids! For those of us who put on the pounds and feel like sluggish (or beached?) whales. I do also really feel for those who lose weight and have wasting with their illness. It is very scary. J
 

MEKoan

Senior Member
Messages
2,630
The much loved pin-up girl Hilda by Duane Bryers

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