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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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Have you lost, gained or stayed the same weight?

Since the onset of illness my weight has:

  • Decreased more than 10 pounds

    Votes: 10 19.2%
  • Decreased less than 10 pounds

    Votes: 2 3.8%
  • Stayed the same

    Votes: 4 7.7%
  • Increased less than 10 pounds

    Votes: 4 7.7%
  • Increased more than 10 pounds

    Votes: 18 34.6%
  • has fluctuated over time

    Votes: 14 26.9%

  • Total voters
    52

Kyla

ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ
Messages
721
Location
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

Senior Member
Messages
3,657
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
 

PennyIA

Senior Member
Messages
728
Location
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.
 

ahmo

Senior Member
Messages
4,805
Location
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

ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ
Messages
721
Location
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
 

Revel

Senior Member
Messages
641
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!
 

Gingergrrl

Senior Member
Messages
16,171
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.
 

August59

Daughters High School Graduation
Messages
1,617
Location
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"
 

daisybell

Senior Member
Messages
1,613
Location
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.
 

Tammy

Senior Member
Messages
2,176
Location
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

Sally Burch
Messages
900
Location
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.
 

SOC

Senior Member
Messages
7,849
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.
 

daisybell

Senior Member
Messages
1,613
Location
New Zealand
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.
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...
 

redviper

Senior Member
Messages
145
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.
 

rosie26

Senior Member
Messages
2,446
Location
NZ
I lost close to 25 pounds (11kg) at severe onset. I have not regained it entirely back yet.
 

Ruthie24

Senior Member
Messages
219
Location
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!!
 

Richard7

Senior Member
Messages
772
Location
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%.
 

Keela Too

Sally Burch
Messages
900
Location
N.Ireland
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...

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!
 

eafw

Senior Member
Messages
936
Location
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
 

lansbergen

Senior Member
Messages
2,512
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.

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.