• Welcome to Phoenix Rising!

    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.

    To become a member, simply click the Register button at the top right.

weight Gain

kat0465

Senior Member
Messages
230
Location
Texas
anyone find thierself jut gaining weight for no apparrent reason?? i cut out all sweets, hardly eat any carbs,and really watch what i eat.

But am just steadily gaining:( my dr actually put me on some b12/amino acids/ and a few other things mixed in the shot once a week to help me loose some weight and maybe up my energy.

i just gave myself the 3rd shot monday and weighed today, im 2 weeks i gained 3 lbs:tear:
i know women have a hard time with weight after a hystorectomy but this is insane, at this rate im pushing obese, i was always thin, but not now.

anyone have a clue:confused:

Kat
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Sorry Kat, it makes no sense to me as well.

After becoming ill I piled on the weight and nothing helps it.

Years of chronic vomiting at the start, then years of chronic diarrhea most recently.

My doctor was amazed that after a terrible bout of food poisoning once I even gained weight. When I was well enough to do graded exercise programs, the weight still piled on. Hope we have an answer for this one day.

Avoiding carbohyrates does help but not enough.

XMRV+
 

serenity

Senior Member
Messages
571
Location
Austin
i've tried everything. the only thing that keeps me thin is not eating. obviously that is not good, so i just deal with the extra 10 lbs for now, but if anyone had any ideas i'm willing to try just about anything!
 

Tammie

Senior Member
Messages
793
Location
Woodridge, IL
I have struggled with this, too, inc even when nauseous, vomiting, etc.....one thing that I did notice helped a lot, though, was cutting out dairy.....that is not actually why I cut it out (I just could no longer stomach it), but it did make a difference
 

serenity

Senior Member
Messages
571
Location
Austin
i've tried cutting both carbs & dairy, tried being vegan - i mean i have tried, that last 10 lbs will not budge. it is weight the doc insisted i gain & he was right, i do feel better but i wish i could figure out how to feel better & still be thin!
 

kat0465

Senior Member
Messages
230
Location
Texas
Serenity,
i'd give anything to have that last 10lbs to get rid of.if i told you how much weight i have gained!!! well i wont tell ya,lol
about 8 years ago i had gained a lot, then had some wierd episode of constant(and i mean constant) vomiting fo about a month. i was so terribly ill i lost 50 lbs!!got down to112 again.
and of course they couldnt tell me why i was vomiting and loosing weight at record speed.

i honestly didnt think id live thru that, but after 3 months or so it finally passed.i kept off the weight without even trying for several years,( appetite gone!) but now that 50 and then some is just packing on and packing on
:(
i can also get a stomache virus or not eat hardly at all, and still Gain. maybe EBV and HHV6 likes fat.
 

kerrilyn

Senior Member
Messages
246
Unfortunately I can relate. I've stepped on the WiiFit and 2 minutes later stepped on it again and gained weight (??!!). I think I can gain weight by just breathing air! I haven't stepped on it in months because I'm afraid to hear that condescending little voice say 'That's Obese' and see my Mii look plumper.

Considering I don't exercise or move much I'm actually lucky to not be gaining (more) weight now, but it doesn't come off with diet changes either. I think mine has a lot to do with hormones - at least that's my excuse and I'm sticking to it.
 

kat0465

Senior Member
Messages
230
Location
Texas
Oh geez kerrilyn, i wanted a wii really bad... tll i heard the " Thats Obese" thing,lol. it would probably explode if i stepped on it.
i know i dont get enough exercise, although i push myself till i crash for a week or so, then start the whole thing over again. i do agree about the hormone thing, but i figured after the hysterectomy

when i started bio identical hormone it would help( suzanne sommers said it would) it hasen't even made a den't!!
 

kerrilyn

Senior Member
Messages
246
I want to get back on the Wii (like getting back on the horse), because it was fun, but haven't been up for it yet. It was easy to overdo it and pay for it later. You have to have a sense of humor with the Wii too. Not only will it make your little character appear visually fatter on the screen, but I've done the little tests (coordination etc) to gauge your Wii age and it thinks I'm 20 years older than I really am ....if you don't laugh, you'll cry.

I hoped bio-identicals would do the same for me too. It didn't. The doc I saw said testosterone would give me stamina and muscle strength too. It didn't. But maybe someday soon all the extra lbs will just fall off onto the floor in a puddle :)
 

Anika

Senior Member
Messages
148
Location
U.S.
There is definitely something more to weight than just calories ingested and expended (at least using usual counting methods). How else to explain gaining weight when sick (e.g. the diarrhea) and barely eating, but then sometimes losing weight unexpectedly?

I think I read some anecdotal reports some years ago, by people who treated for anti-phospholipid (hope I have that right). If I recall correctly, some people gained weight with illness and lost it as they began to recover.
 

helsbells

Senior Member
Messages
302
Location
UK
I too have trouble with weight gain especially round my middle, so very big muffin tops and tummy, it doesnt go on in proportion, I have always been curvy but slim put on a lot of weight a few years ago when I was on amytriptiline and zopiclone - came of that time and did actually diet and lose the weight that time - although slill have all the stretch marks as the weight went on so fast. This time I am on zop every other day and rivitril, I wonder if the latter is slowing down my metabolism or just age? I have made dietry changes recently which would normally be enough to have me losing weight but being strict with my diet just seems to mean i don't put more on and yes i had diareah when I moved here and no weight loss!
 

coxy

Senior Member
Messages
174
I to seem to gain weight by just thinking about it! Everything has got a lot chubbier, i seem to look fatter some days than others.

Weirdly though my daughter and son blew up like balloons (my son is at that stage now 4yrs with me/cfs), but my daughter now has the opposite problem, she lost 3st in a year and now only weighs approx 7st. At first we took it as a good sign that she may be getting better, but that hasn't been the case and she is on some very strong anti nausea tablets at the moment as she feels sick most of the time. She does eat albeit at some strange times.
 

serenity

Senior Member
Messages
571
Location
Austin
yeh, i know i shouldn't bitch cuz it could be worse - but i was 110 before the docs insisted i gain weight & it was effortless, i just never ate & never thoguht about it - until dinner when my husband came home & needed to be fed. then the docs insisted i start eating during the day & of course they were right i certainly feel better - but all i eat is healthy stuff during the day & i still put that weight on & can't get it off.
i have tried the Wii but i find i do better with tapes, i can pause an exercise vid when i get tired. i didn't like that the Wii tried to tell me what to do, i need to be in control of it when i exercise. that's why i dont' go to exercise classes either. the last thing i need is to be pushed.

Kat i am so sorry to hear about your bout with throwing up - that is just awful! a diet i wont' be trying! eek!
 

helsbells

Senior Member
Messages
302
Location
UK
I to seem to gain weight by just thinking about it! Everything has got a lot chubbier, i seem to look fatter some days than others.

Weirdly though my daughter and son blew up like balloons (my son is at that stage now 4yrs with me/cfs), but my daughter now has the opposite problem, she lost 3st in a year and now only weighs approx 7st. At first we took it as a good sign that she may be getting better, but that hasn't been the case and she is on some very strong anti nausea tablets at the moment as she feels sick most of the time. She does eat albeit at some strange times.

Oh sorry about your daughter coxy that's a worry for you :( has she seen a gastro?
 

ukxmrv

Senior Member
Messages
4,413
Location
London
I did a quick count at ME support meetings in the 80's and 90's. Of the severely underweight patients (who were often quite yellow in colour) the majority were men. There were of course, some very slim women there as well. Of the very ballooned the majority were women.

Has anyone else noticed this? Of course, these were people who were well enough to attend a meeting.
 

dannybex

Senior Member
Messages
3,561
Location
Seattle
I did a quick count at ME support meetings in the 80's and 90's. Of the severely underweight patients (who were often quite yellow in colour) the majority were men. There were of course, some very slim women there as well. Of the very ballooned the majority were women.

Has anyone else noticed this? Of course, these were people who were well enough to attend a meeting.

Were you at some of our meetings? :)

Seriously, many of you will hate me for this, but I'd KILL to gain some weight (and no, I'm not yellow, but think there is a fat intolerance issue as part of it). I can gain a little weight around my middle, but have lost muscle all over the place, even in my hands and feet! Very scary, and not comfortable, both in bed, and just sitting on chairs with no padding or cushions. It feels just like there's no muscle there at all, even if there is a little...just like sitting on bone.

If I eat "too much" of anything carby -- and we're talking 'good' carbs -- my salivary glands start to swell, like I don't have enough enzymes, and sometimes they sting. If I eat something too fatty, which isn't usally that fatty at all -- then I get a lot of RLS-type symptoms in my legs -- extremely uncomfortable.

I'll shut up...but just wanted you to know there's a flip side to this that's almost never discussed...how difficult it can be to gain weight, and how dangerous it can be to lose too much weight.

:)
 

coxy

Senior Member
Messages
174
Strangely my daughter does have spells of looking very yellow, i've noticed she's had that problem for years. My son and i have Gilberts disease, so does my dad but he doesn't have me/cfs, my daughter was never tested for it but i imagine she would have it to. It doesn't cause any symptoms to anyone, but it is linked to the liver which could explain the yellowing i suppose. Dr Charles Shepherd states in his book that a large portion of me/cfs sufferers haved Gilberts disease but they have no idea why.
She also appears to have lost muscle.
 

kerrilyn

Senior Member
Messages
246
I'll shut up...but just wanted you to know there's a flip side to this that's almost never discussed...how difficult it can be to gain weight, and how dangerous it can be to lose too much weight.

Danny, for a very long time, even though I had many symptoms of ME/CFS, I didn't think I could possibly have it because I was overweight. I honestly thought all PWC were (or had to be) thin. Thinking that delayed me learning more about this illness, but I also tend to live in denial. Hormones have been a problem for me since I was really young, that was the first thing that went off the rails). I was someone who could put on weight easily and since getting sick(er), that's worsened with lack of exercise and further hormone problems. I guess we come in all shapes and sizes :) It isn't good to be underweight either.
 

Tammie

Senior Member
Messages
793
Location
Woodridge, IL
I think there are several reasons why many of us gain weight so easily now, but there is one theory I have that I have never seen mentioned.....it has to do with the mitochondria and PEM

.....when we experience PEM, our bodies pretty much shut down, and that must include our metabolisms, too.....so not only do we have to deal with less activity, but I think that when we do manage to do some activity, it actually backfires in the weight dept, bc the activity causes PEM which shuts our metabolisms down instead of increasing them as activity would do for normal people