Has Anyone Who Suffers fro ME / CFS Sucessfully Lost Weight??

[Jacey]

Hi all, I ve not been on here for some time but have decided to come back here for some support and advice as Im STILL really struggling with my weight.

I was diagnosed with ME/CFS {chronic fatigue}about 10 years ago and the last 5 years its become worse and I ve gained weight. I also have an underactive thyroid for which I take medication for.

My problem is that I cannot find a diet that seems to work for me - with most I lose the norm "2lbs" a week for few week then i always regain and always end back at my original starting weight. I ve tried sole sourcing, fad diets, calorie counting, WW, SW etc yet really struggle.

Ive kept food diaries for years, tried slimming pills from my doc and am at a complete loss as to what I can do to shift my excess weight { 5-6 stone}

My GP runs a weight management clinic but because Im unable to exercise and according to them am eating the right foods they told me i needed to eat low cal low fat but drastically reduce my calories to about 750-800 a day, that was the only advice I was given.

Im beginning to think Im destined to stay this size forever, so just wondered really if there is anyone out there who has /have had ME/CFS and successfully lost weight who wouldnt mind sharing how they managed it as im really desperate!!

Thanks Jx

 

[Taz]

I have a friend who had ME/CFS and she has lost some weight. She didn't have a lot to lose but she lost what she wanted to.

As for the not exercising, I was unable to walk for about 5 months and in that time I still managed to lose some with diet alone.

 

[Starlight]

Ive had ME for 8 years but thankfully not had a flare up in a couple. I have as youll see had a bit of success with losing weight and havent found its hindered me

 

[Jacey]

Thanks both for your replies, from what you've both suggested the ME/CFS or lack of exercise in theory isnt the reason Im not losing then.

Im really puzzled I have to say as I just simply dont know what else to do, I ve kept food diaries which my doc says are ok, average calorie intake per day is between 900 & 1200 try to vary it to help with metabolism.

I just genuinly cannot shift it, Im stumped lol x

 

[Jacey]

By the way forgot to add - well done to you both with your weight losses x

 

[IrishMum]

My problem is that I cannot find a diet that seems to work for me - with most I lose the norm "2lbs" a week for few week then i always regain and always end back at my original starting weight. I ve tried sole sourcing, fad diets, calorie counting, WW, SW etc yet really struggle.
So in theory diets DO work for you, you have to work out why they only work for a few weeks? Do you get bored of it, do bad habits slip back in, do you get de-motivated? If you work on why you start to gain again maybe that'll help you figure out a programme for yourself that will work long-term?
I have an underactive thyroid and have been a yo-yo'er and bulimic(recovered- hopefully!) for years. I've tried every diet under the sun too. A few years ago I lost 7 1/2stone by eating a LOT less than I was (7-800cals maybe?) and walking the ass off myself. Of course I gained a bit back when I stopped the exercise, and marriage & kids packed on a few more stones! Anyway, since January I've been religiously writing every bite (and I mean EVERY bite) that goes into my mouth in an online log, and have been doing NO exercise, and I've been slowly losing. I mean slowly...1lb a week most weeks, but its coming off? I'd get a 2nd opinion if I were you, as I think maybe your GP doesn't 'believe' you eat what you say you eat? Another Doctor may see something they've missed? I'd be pi**ed off too if all my effort didn't result in some loss?

 

[Jacey]

Hi Irishmum, thanks for your reply.
With regards to loosing a couple of lbs then regaining, it genuinelly hasnt been down to slipping up, getting bored etc. I have kept a food diary for years but religiously for the last 12 months and was under a weight clinic and also taking weight loss pills at my GP's surgery ,where by I had to keep a note of everything i ate in order to be able to continue with the medication.

My GP knows i can bearly exercise due to the ME so did expect me to take longer than most people in order to show losses and maintain losses but even they were stumped when after each diff diet i followed that the lbs crept back on - its as though my body just doesnt work lol!
I offered to go to a clinic as an inpatient whereby they could completely monitor my food intake to prove i wasnt cheating etc but they said that there were no such schemes that did this, so the end result was to cut back on cals to about 700 or there abouts and try that, however the doc I was seeing for the ME said that wasnt a good idea and since then i ve been kind of going around in circles.

Saw a diff GP yest by coincidence who feels I may either have pcos or some form of hormone imbalance / insulin resistance which could explain some of my weight, difficulties shifting it etc, so am just waiting for some tests now, im at the stage where i think if they told me to eat cardboard to lose weight then i probably would lol!!

I think you did amazing well to have lost 7st you obviously worked really hard at it and although its a slow loss prob due to the thyroid probs at least u have been able to shift weight before and know what works best for you, I agree writing everything down is a massive help, its second nature now for me lol but really helps to prove one way or another if ur sticking to it as without having done mine for so long I agree I dont think any docs would have truely believed me.

Hopefully i'll get a diagnosis, treatment if need be and some proper dietary advice soon and then i can have a good crack at shifting my weight, good luck with ur dieting and as slow as it is u know U CAN do it hun x

Jx

 

[IrishMum]

Aw thanks hun, at least they're still looking for reasons for you not losing? It really sounds like its some kind of medical issue that hasn't been addressed? If you lose then stop losing- it sounds like something is 'triggered' in your system that stops you losing any more? There has to be a solution for that? I really hope they come up with something- not that I want you to have a 'condition', but so that you can finally be healthy AND see some results!

 

[Rachel L]

I've heard that if you are having a lot of sleep problems with ME then you will not loose weight, no matter how much you diet. Also the ME could be distrupting your metabolism, which will again prevent you from loosing. Unfortunately it may be a case of until the ME improves you will have trouble loosing weight. Sorry i'm not much help.
The best exercise, if you can manage it, is a walking (my mum has ME and does a ten minute walk a day) or yoga when you begin to feel better.

 

[Wish]

No advice re the weight, but wondering if you take Melatonin for your ME? My 12 yr old daughter has ME and was prescribed Melatonin, to help her sleep at night. We noticed that she gained weight after being on that, not a huge amount, shes certainly not overweight, but she went from being very underweight to normal within a few months. Just a suggestion really, wish you well with it, ME/CFS is a horrid condition.

 

[Jacey]

Thanks everyone, just in process of blood tests and scans etc so am hoping something comes to light .......i think lol.
Am sort of following low carb low fat diet at the moment as if i do have a hormanal imbalance / condition then low carb eating appears to be what the docs recommend so hopefully i may have some success there

Have also read similar things about lack of sleep affecting weight loss, really hope this isnt true but could be part of the reason maybe, am not on any medication for the ME/CFS so my weight issue isnt stemming from there.

Guess whatever the outcome I have to accept that my weight loss {if i ever get going} will be slower than others and will have to be very impatient and deffo not expect miracles lol

Wish - ME is awful and I truely feel sorry that your daughter is being affected by it at such a young age, I know that some people can recover from ME although it takes a while and I really hope your daugter is one of those lucky ones !

 

[Wish]

Thanks everyone,
Wish - ME is awful and I truely feel sorry that your daughter is being affected by it at such a young age, I know that some people can recover from ME although it takes a while and I really hope your daugter is one of those lucky ones !

Thanks Jacey, yes its horrible for her, shes had it a long while, although only officially diagnosed 12 months ago, she first started with the symptoms after she had gland fever when shes 5-6 yrs old.

I hope you get some answers too and hopefully one day, there will be a cure for horrid disease.

XX

 

[Donnam84]

Hi, I know this post was some time ago but I was wondering how things are now? I have been struggling to lose weight for 3 year after strict dieting. I have recently been diagnosed with CFS and wondered if they are connected?