Please be kind. Will delete this if comments get cruel. I‘m not in a good physical or mental state at all
TLDR: I‘m severely ill and can’t lose any weight, makes me hopeless
I (45 f) am mostly bedbound and completely housebound with ME/CFS. I can still get up to go to the toilet, but I have to eat and brush my teeth while lying, having a shower is rarely possible. I can’t cook anymore either other than warming up things in the airfryer or microwave.
My whole life I had an abnormally good metabolism, at least until I came down with ME/CFS 10 years ago after my child was born. My metabolism was like that even without exercising a lot. Had no hyperthyroidism either.
I had a gradual onset with this illness, so I started out mild, but I get a bit worse every year, it’s progressive.
The past ~ 5 years I had put on more and more weight. I haven‘t been eating sugar for years now, and only limited amounts of fruits. Used to have carb sides though and I didn‘t eat low fat either.
I tried eating moderate carb and altogether starved myself for 6 weeks in 2023 - as a consequence I deteriorated a lot and didn’t get back to my prior baseline. All I lost in weight was 200 g (= nothing).
I also had noro virus in 2024 - you know what this entails lol. Hardly ate for a week. I should have lost at least water. Again I didn’t lose any weight.
Instead I slowly put on more and more. Beginning of the year I could get someone from a lab to do a housecall. The tests showed I have insulin resistance. Makes sense.
TSH was in range, ft3 & ft4, other hormones weren’t tested, but will do so in summer.
Been eating low carb since beginning of February of this year, keto since beginning of March.
I don’t have any cheat days, but had 4-5 times when I was more low carb than keto. Yesterday was my birthday and I didn’t cheat even then, other then one small vodka with diet soda. I usually have neither, this was my only treat.
It’s true, I‘m not eating in a perfect keto way. It’s sometimes lazy keto, but I have to eat what my husband/caregiver prepares for me.
I purposefully did not weigh myself when I started eating this way, cause I knew if I didn’t lose weight it would make me feel even more hopeless. I thought if I really lost a noticeable amount, I‘d see it in the way my clothes were getting lose.
I‘m 5.51 ft tall and I‘m guessing I must have had around 189 lbs (168 cm, 85 kg).
It’s very hard to keep on living with ME/CFS and this whole issue is making it so much harder, especially mentally.
I take care of drinking/supplementing electrolytes the way it is recommended.
Exercise is strictly impossible. Unless I want to hasten my demise.
I feel also physically worse since starting low carb / keto. I can do less daily steps.
I‘ve been a severe chronic insomniac since childhood (might be a factor in my insulin resistance), but also my sleep is worse.
My mood is worse, depression and anxiety through the roof. I don’t think it’s keto that causes it, just my lack of results and my despair over it.
I can’t do OMAD or even just intermittent fasting, because I‘m crashing hard from it, it’s too dangerous.
I don’t know if I‘d tolerate Ozempic or metformin because I have a history of severe adverse reactions to many meds.
I don’t have MCAS and antihistamines do nothing for me.
I noticed my face getting a bit slimmer and a teeny tiny bit on my body, but not much. This frustrates me more than words can say.
Can’t even read low carb success stories anymore. Triggers me too much, the contrast is too stark.
Gluten is not the culprit either - i‘m eating gluten free by way of keto.
I frankly cannot give you the exact macros I‘m always ingesting. I managed to check 3 days in a row. I had around 960 calories (a day), but I believe I‘m often around 1200. Daily carbs were between 20-26 g, I had a bit less fat than recommended.
I had an eating disorder as a teen. But since starving (or fasting) has the potential to irreversibly make my ME/CFS worse, I can’t go down that road. I‘m trying to stay alive so I can be with my kid as long as possible.
Other than trialling meds I don’t know what else to do. As I mentioned, it’s possible I can’t even tolerate those.
Low carb/keto helps some ME/CFS sufferers tremendously, some a little bit and it makes others worse - I‘m sadly not part of the former group. I don’t have any better idea though.
Tbh I won‘t manage to eat keto in combo with strictly low fat. I‘m eating a tiny bit less fat than what keto would normally entail, but I need this amount, otherwise I get nasty hunger crashes and stop having any deep sleep — counterproductive
Any idea what to do here?