How do you deal with weight gain when suffering CFS?
Posted , 9 users are following.
After years of struggling, I was finally diagnosed as having CFS earlier this year. Despite exhaustion, I was for years largely able to keep my weight in check by eating healthily and walking or doing yoga when I had good days. But my symptoms have got a whole lot worse the last 18 months and I currently have days when I struggle to get out of bed. I'm doing my best to keep eating nutritiously, but right now any form of exercise is out of the question. As a result, I'm losing muscle and gaining fat. It's hard enough staying upbeat with this condition, but it's incredibly depressing to watch myself get fat and find my clothes don't fit. Does anyone else experience this? How do you cope with it?
0 likes, 32 replies
jane_0000 Jo12875
Posted
that was the thing that did my head in and still does. I have an eating disorder and have had to deal with that as well. I changed my eating.. got very expensive supplements. spent lots of money. got flabby as as no yoga. hill walking etc. it has been suggested by a alternative practitioner to eat very slow cooked food
always hot. warm foods is best for our poor bodies. the adjustment has been harsh... I'm used to the flab now but when your whole body feels so sore and fatiqued then gain gain is a huge shock. I'm learning to live in management mode. I've stopped ALL SUPPLEMENTS ..they didn't work ( for me) . I had to work out how I could work so now part time(another huge adjustment). be kind to yourself.
Jo12875 jane_0000
Posted
Gosh Jane you've done amazing dealing with an eating disorder and this. I do wonder if I've had some of this going on. My body has always seemed to want to be heavier than I want it to be. Now I've had to allow it to get there and beyond. But, as you say, adapting to a bigger body, which is also tired and sore, is tough.
Like you, I'm also adapting my work life. I'm self-employed and have had to take time off in the last month or so because I hit a complete energy wall. But I'll have to go back at some point as I need the money. Trying to figure what that looks like too.
Thanks and take care
jane_0000 Jo12875
Posted
I know it's so confusing.. after my time off i went part time with rest days so dealing with less wages took a while. all I know is if I try and work more I collapse and if I do feel slightly better I'm very careful I don't overdue it. as small things can trigger days in bed.
I really feel for you and hope u get some nice times ahead.
k
Jo12875 jane_0000
Posted
I hear you, Jane. It sounds like, although you've cut back what you do, you've got a bit of a handle on things.
Thanks for your empathy and understanding. Sending good wishes to you too.
jane_0000 Jo12875
Posted
take good care of yourself jo.. here if u need an ear.
Jo12875 jane_0000
Posted
Thank you so much. You too 😃
CherylGH Jo12875
Posted
yes I have also found I have gained weight, this is largely due to me eating sugars to give myself a quick burst of energy as I'm so tired all the time. I know this is not what I should be doing as it makes fatigue worse long time but I sometimes feel I need it, along with laying in bed this has also made me gain a stone in 4 months. This condition is very tricky so dont be to hard on yourself, I know weight gain is not another thing we want to add to this horrible condition but seems slightly inevitable due to the lack of energy we now have as we cannot exercise like we did before. However healthy eating I'm sure would help go along way and I know I need to do this too. Keep your chin up, let's pray one day they find a cure for this terrible illness.
Jo12875 CherylGH
Posted
Thank you, Cheryl. I know, it's so tempting to eat quick sugars to try to get a burst of energy!
It's a bummer putting on weight. But, as you say, there is a certain inevitability about it.
This has got to be one of the least understood or supported areas of medicine. It's weird there is such a lack of remedy or even solid information. Hence, we're all finding our own way through, by the feel if things.
Take care
elaine62759 Jo12875
Posted
I noticed you said that you've felt worse the last 18 months and wondered if you can think of anything that might have triggered the worsening of your symptoms? Has something changed in your life that could account for you feeling worse such as trying to do more than normal, additional stress from any source, a change in eating habits or hormonal changes? I can manage walking and occasional gentle yoga on good days which are helpful towards keeping the weight under control. I did too much recently so am now in relapse so struggling to do either! I was thinking if you could get to the root of why you feel worse you're energy might pick up again and you might be able to become more active again at some point. I think it's a about getting the balance of activity and rest right.
You could try keeping a diary of what you've done and how you feel afterwards and also a food diary of everything you eat and drink to see where the calories are coming from. Try and concentrate on eating smaller nutritious meals and snacks and see your food as fuel. I put on a lot of weight when first ill but have gradually lost some by healthy eating and activity when I can manage it. Soups, smoothies, lots of vegetables (sweet potatoes in particular seem to give me a boost), wholegrains, oats and try have some form of protein with every meal or snack such as nuts, eggs, chicken, fish, dairy or soya. Try and limit junk food to treats but don't cut them out all together as you need something nice to look forward to!
I just completed a stress control course (hence the relapse!) but I found it really useful. One thing I picked up on was the impact that feelings of stress, anxiety and low mood can have on your body. If you have these feelings it puts your body into fight/flight response which affects your body in all sorts of ways such as muscle tension, weight gain, dizzy spells and exhaustion. Even if you think you are lying in bed resting if your mind is not switched off you can be in fight/flight mode without even realising it. It can be helpful to find ways to switch off the fight/flight response by finding ways to make your body and mind feel completely relaxed such as guided meditations, listening to relaxing music or whatever makes you feel completely relaxed. I realise this last bit is not to do with your original query about weight gain but thought it might be helpful. Will stop waffling and go now! Hope you find something that helps.
Jo12875 elaine62759
Posted
Hi Elaine,
Thanks for that super long message.
Thinking about it, so much changed 18 months ago. My partner's job changed meaning he started getting up at 5am 2-4 times a week to commute into London. That wakes me up, plus for financial reasons we share a car meaning I end up driving him to the station most such mornings. I also took on 2 pieces of freelance work that were very stressful. I think this would test anyone, but I guess with ME/CFS it's magnified. Oh and his mother had died after a long illness the year before. So it's no wonder I've recently got worse.
I've had to walk away from the work at least for now. Did that late August and it has at least stabilised things. Someone I spoke to offline suggested I make lists of the people, places, things (including my own behaviours) that deplete me and energise me, so that I can gradually back off one and do more of the other. That's proving interesting! I suspect I need to make many lifestyle adjustments (understatement).
Your stress course sounds fascinating. Of course, permanent flight/fight is associated with weight gain - intellectually I knew that but hadn't joined the dots. I suspect that if I focus on calming my mind/body down, I'll make more progress than by only paying attention to food. Which is not to say nutrition isn't important, but that it's not the only factor at play.
So, time to do more meditation etc, I think. BTW, on the subject of anxiety, a friend suggested I get a weighted blanket. I've been trying it for only a couple of days, but it's so soothing. Seems to act like a hug on the autonomic nervous system.
Anyway, now I'm wittering! Thanks again and take care.
elaine62759 Jo12875
Posted
That's a lot of extra pressure you've had lately so it's no wonder you've been struggling. Taking a break from work is one of the best things you could have done for the moment. It will give you time to recharge your batteries and get back on track again. I struggled to keep my job going for years and eventually lost my job which I now see was the best thing that could have happened at that time. I managed to have time to try different things and get proper good quality rest for a change without the constant pressure of being well enough to go to work. I did improve quite a lot and hoped to try and get back to work but the got worse again (hormones!) but feel like I'm coming through the other side and am starting to see some improvements again.
I did something similar in the past by writing down energy savers and energy givers and found it really useful. It's not just physical things that drain your energy but strong emotions such as anxiety, frustration and anger can do it too as well as certain people! The stress course I did recently also reminded me of how your emotions can affect you physically. One thing the course mentioned was try and be less like a meerkat (hypervigilant) and more like a sloth. Visualize both and think which creature looks more relaxed! Another thing you can try for motivation is say to yourself 'I'll just do the task for 5 minutes' and give it a go. Often we don't attempt things as we feel it's beyond us but often you could manage to do the task for 5 minutes which would be better than doing nothing at all and you might even manage to do it for longer once you get going!
I was reading something recently about weighted blankets being good for calming you down so it's good to hear you're finding it helpful. Might think about trying one myself. I really hope you start to pick up soon. Remember - you can't give from an empty well so put yourself first for a change!
Jo12875 elaine62759
Posted
Morning Elaine.
Yes, it's only been a few weeks but I'm definitely glad to have taken the pressures of work off myself. Like you, I'd struggled for years. It must have been something of a relief when you lost your job. And hormones aside (I know, been there too!) time away from work sounds like it has done you good.
I love the meerkat vs sloth analogy. My hypervigilance button seems to have been pushed to permanently on at the moment, so I could definitely benefit from channeling more of the latter!
Yeah, give the weighted blanket a try. So far I'm enjoying mine.
Anyway, thanks for a great chat here and for your support. Take care!