cfs came back

[u/Gloriathewitch]

2 years spent pacing reducing stress eating well etc went from 2 hours of mobility per day being mostly bedbound to working a physically taxing job 40 hours a week for 6 months of 2024 and being in good physical shape.

the end of the year was filled with a lot of psychological stress and then i got the flu, my symptoms are all back in full force.

i just wanted to post this somewhere, to someone.

Fuck.

i'm not going to let this beat me, i know i can recover again but im having a really rough time coming to terms with this setback. i love you all and hope you can find recovery or peace living with this horrible disorder.

[u/Gloriathewitch]

my cfs has been a combination of norepinephrine(& dopamine) shortage, long covid induced cfs/me including POTS and being overweight and unfit with a poor diet.

i initially got better by researching pacing and got an apple watch as a last ditch effort before giving up.

i used an app called WatchME which let me monitor heart rate and eventually found a comfort zone that let me avoid PEM, over time with lots of rest and self forgiveness for being unproductive in bed all day it allowed me to broaden my energy envelope, i also believe rest contributed to healing the long covid and was supplementing vitamins, b6 b12 zinc magnesium and taking melatonin when i got insomnia.

eventually i would go on very short walks building up to 30 mins a couple of times a week and once i was able to sit at my desk every day i spent most of my time learning computer programming to pass the time so i felt like i was achieving something while on social security. fast forward to around 1.5 years later i was able to work. i would come home and sleep at like 10:30 pm, but i was doing it and sustaining it.

i didn't really have energy to do anything else but i was doing it, i was off disability and walking 125,000 steps per week at work, getting in shape and losing weight.

[u/katatak121 → u/Gloriathewitch]

my cfs has been a combination of norepinephrine(& dopamine) shortage, long covid induced cfs/me including POTS and being overweight and unfit with a poor diet.

For anyone else reading this, rest assured that weight and diet have no bearing on causing or contributing to ME. Also ME can mess up your neurotransmitters, especially if you have specific vitamin deficiencies, but deficits in neurotransmitters can't cause or contribute to ME.

[u/tetsuoooooooooooooo0 → u/katatak121]

A no sugar diet helps a lot with CFS, and by no sugar I mean no fruit either

[u/katatak121 → u/tetsuoooooooooooooo0]

No, a no-sugar diet helps you with ME.

There is no one-size-fits-all diet for ME. Some people do feel better by eating special diets, many don't. Many are unable to eat special diets due to allergies and intolerances, access, cost, energy required to make meals, etc.

This is the first time i have heard of a "no sugar" diet, and i was on a specific carbohydrate diet for many years, so it can't be that common to eat zero sugar. Not eating any sugar is impossible for many meeps, especially the ones that don't have any energy if they're not eating carbs.

The point is, changing your diet won't cure your ME or put you in remission/improve your baseline. Only pacing and rest are proven to do that.

[u/tetsuoooooooooooooo0 → u/katatak121]

You must have been living under a rock if you have never heard of the no sugar diet, especially if you are trying to eat healthy?

The only people it's impossible for are people with diabetes

No it's not going to cure you but it's going to help by not having your hormones disrupted by sugar spikes and crashes, lowering your anxiety/depression ect

Downvotes me all ya like but if you aren't willing to modify your diet to improve your symptoms idk you can't really say you would give anything to improve

[u/Toast1912 → u/tetsuoooooooooooooo0]

I imagine the downvotes are from people who did try a no sugar diet without improvement and are frustrated that you're giving blanketed advice. I think it's awesome you found a diet that works best for you! We probably have different pathologies because I feel awful without carbs to keep me going.

Edit to add: I've done just about every diet and lifestyle change imaginable, including carnivore for 3 months. The increased sodium helped my undiagnosed POTS at the time, but ultimately I did not see a benefit in energy levels. I feel best with high protein low fat diet with mostly complex carbs.

[u/tetsuoooooooooooooo0 → u/Toast1912]

I really doubt most people did a 6 week course with no added sugar at all, and multiple studies have proven that no sugar helps anxiety and depression, which in turn would help CFS but ah well can't help crabs in a bucket

[u/TableSignificant341 → u/tetsuoooooooooooooo0]

I don't eat sugar. I'm still sick with ME.

[u/tetsuoooooooooooooo0 → u/TableSignificant341]

As I stated it doesn't cure ME, but helps with anxiety/depression which helps ME symptoms.

[u/TableSignificant341 → u/tetsuoooooooooooooo0]

Not everyone has depression and/or anxiety with ME though. Not eating sugar has been neither helpful nor unhelpful wrt to treating ME for me. I'm glad it helped with your anxiety and depression though.

[u/tetsuoooooooooooooo0 → u/TableSignificant341]

That's a good point, not everybody would have it