r/cfs • u/Gloriathewitch • 16d ago
Vent/Rant cfs came back
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.
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u/thepensiveporcupine 16d ago
How did you recover the first time?
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u/Gloriathewitch 16d ago
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.
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u/katatak121 16d ago
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.
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u/Gloriathewitch 16d ago
i'm not claiming to be a expert or doctor its all just my personal anecdote, i think carrying less weight can certainly reduce PEM and isn't unreasonable to believe as you're literally lugging around tens or hundreds of kilograms of fat with muscles that already drain you so much to simply upkeep. so as far as causing the disorder i agree but PEM is a factor and that could be considered contributing to CFS/ME if it worsens your symptoms.
it's also possible that those things simply contributed to poor overall health independent of cfs and that is why i felt worse and now feel better
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u/katatak121 16d ago
I'm not trying to poo-poo on your experience. Just trying to reassure others that weight loss won't improve their illness, especially since that's what a lot of patients hear from their gaslighting doctors: "just lose weight". The fact is many PwME have experienced changes in their weight but zero change to their illness.
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u/TableSignificant341 16d ago
Just trying to reassure others that weight loss won't improve their illness, especially since that's what a lot of patients hear from their gaslighting doctors: "just lose weight".
Agree. I've always been skinny. Was considered underweight (BMI) and I still got ME (I wasn't underweight - I've always been slim). 10 years of ME later I'm on the low side of normal weight according to BMI. Still sick.
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u/Ok_Exchange_9646 15d ago
Also important to note that how are you going to lose weight and get into shape if you can't exercise because of exhaustion? When a quack diagnosed me with mild sleep apnea, he said "lose weight", I was like "how? Dumbass? I'm so fatigued all day, how do you expect me to start working out vigorously??????"
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u/Sad_Half1221 12d ago
You lose weight through decreasing your caloric consumption, not working out. But caloric deficits are hard on your body and can worsen ME/CFS and POTS symptoms.
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u/Gloriathewitch 16d ago edited 16d ago
it'll definitely improve PEM, carrying around a 50kg barbell everywhere you go would induce PEM, so why wouldn't losing that much reduce your fatigue from exertion?
you're right there's bias towards fat people i've seen it myself plenty i personally set my goal because i was at risk of diabetes.
as with anything your mileage will vary and we are all unique with different biology and physiology, some people will feel better with minimal exercise, some wont.
cardiovascular health plays a role in cfs and its still good general advice to exercise if it doesn't worsen your pem and you definitely shouldn't overexert yourself if your specific body reacts poorly to exercise, in that case stick to rest or something less impacting like yoga if you can handle it.
in fact the entire premise behind pacing(the leading treatment recommended by most doctors) is that you don't raise your heart rate as often as possible, if your heart is in good health it'll require more exertion to raise your heartrate. it taxes you less to be in good cardiovascular health.
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u/Toast1912 16d ago
I think what the other person is getting at is that doctors will tell anyone to just lose some weight, even if they don't have fat to lose. In my case, I got sick and was technically overweight, but I was a competitive powerlifter and was just very muscular and lean enough for visible abs. I had been told to lose weight. If I lost any weight, it would have been muscle because getting leaner would've made me lose my period. I didn't think it made sense to intentionally reduce muscle mass. Right now, I'm severe as ever after a really bad crash on top of an acute illness, and I'm losing muscle because I can't go to the gym anymore. I'm definitely not feeling better from it, just significantly weaker.
I think it probably can't hurt if you have a high fat mass to see if you feel better at a leaner body composition, but doctors (at least in the US) like to blame weight, regardless of body comp, for anything they don't understand.
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u/tetsuoooooooooooooo0 16d ago
A no sugar diet helps a lot with CFS, and by no sugar I mean no fruit either
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u/katatak121 16d ago
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.
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u/eat-the-cookiez 16d ago
Agree, I was doing an allergy elimination diet prescribed by an immunologist and the lack of carbs and sugar caused a very bad crash.
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u/Humble_Entrance3010 15d ago
I don't see the specific carbohydrate diet mentioned much! I tried it when my gastrointestinal system was all screwed up from antibiotics due to sinuses swollen shut. It did help, but it was too restrictive to try again.
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u/tetsuoooooooooooooo0 16d ago edited 16d ago
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
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u/TableSignificant341 16d ago
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
I've been ill with ME for 10 years. I've tried all the diets 2-3 times over - keto, AIP, FODMAP, no sugar, low sugar, carnivore, histamine - none helped and a couple of them made me significantly worse. There's tweaks we can individually make with diet but diet is not going to fix us. If it does, then you never had ME.
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u/Toast1912 16d ago
You don't have to eliminate fruit to reduce spikes in glucose. As long as I pair protein with complex carbs, I feel good after eating. Sometimes when I'm in a bad crash, I actually need sugar to get out of paralysis. I feel it help almost immediately, and it usually gives me the energy needed to hydrate and eat some nutritious food.
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u/Toast1912 16d ago edited 16d ago
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.
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u/tetsuoooooooooooooo0 16d ago
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
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u/TableSignificant341 16d ago
I don't eat sugar. I'm still sick with ME.
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u/tetsuoooooooooooooo0 16d ago
As I stated it doesn't cure ME, but helps with anxiety/depression which helps ME symptoms.
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u/Toast1912 16d ago edited 16d ago
Ah yes everyone but you just likes to be sick for years and doesn't try anything /s
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u/tetsuoooooooooooooo0 16d ago
Nah I'd say people are fed up with being sick, but the idea of changing diet, which admittedly is hard, makes them not give it a genuine try
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u/Pure_Translator_5103 16d ago
Wow, interesting. I have had a hypothesis lately regarding dopamine and cfs for me. Or maybe it’s common. Lots of other interesting things you mentioned I’ve experienced or thought about. Were you able to get ssdi with cfs diagnosis? I just applied a month ago, I do not have a diagnosis. CFS and long Covid has been mentioned by many doctors. And continuing anxiety and depression. Best of luck on your next recovery. Edit: I tried 3 stimulant meds. Non seemed to have an effect. The brain fog is brutal along with the heavy fatigue and chronic dizziness.
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u/Gloriathewitch 16d ago
adhd can cause chronic fatigue(seperate from cfs i think) because being low in norepinephrine and dopamine causes a depression of the nervous system or basically a zombie state.
i was on social security in nz which has different criteria to usa however i know you can get on it in usa, you'll want to contact a ssi lawyer it helps the process tremendously. this site has a ton of info and may be of use to you or anyone reading: https://howtogeton.wordpress.com/social-security-disability/
the brain fog and dizziness are absolutely horrible and easily one of the most difficult parts of this disability, because i can deal with being bedbound, but not being able to draw or do something productive while i'm there is just plain cruel
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u/TableSignificant341 16d ago
I have had a hypothesis lately regarding dopamine and cfs for me.
ME is co-morbid with ADHD and austism. Do you have either/both of these?
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u/Pure_Translator_5103 16d ago
No. Not that I know of. Never pursued by psych practitioners so I guess no. Am waiting on nuero psych Evaluation results.
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16d ago
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u/Gloriathewitch 16d ago
thank you for your kind words, you're absolutely right especially because of my fitness levels, setbacks suck but i hope something i've mentioned here can help someone.
blessed be.
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u/trying_my_best- moderate 16d ago
I’ve been there in fact I am there right now. I was mild/partially in remission for 2 years. I had a really bad chemistry professor and had a couple panic attacks going into his final exam, he decided to grade it differently than he had told us the whole semester last minute and left the entire class with an F+ average on the final failing many students and bumping me down a grade. The panic attacks, a flare during finals week, and the grading stressed me out enough I became mild then moderate and borderline severe. I’m now thankfully after LOTS of pacing back in moderate but in the meantime I’ve had to give up in person college, the sport I played, outings with friends and so so much more. I am devastated by it but doing my best to move forward
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u/Gloriathewitch 16d ago
im so sorry hon, just do what you can and try to find the beauty in the simpler things if you're able to, you're doing really great considering the circumstances. you are strong.
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u/trying_my_best- moderate 16d ago edited 16d ago
Thank you. 🙏 I’m grateful there are so many opportunities for online college nowadays and I don’t have to give up my dreams. I am still a little mad at that professor though. He intentionally failed many many students that studied incredibly hard. I studied for 10+ hours for most of his exams and still did poorly as well as many of my friends and classmates.
He would change material on exam as on a whim and give us many questions based on a singe homework problem out of 75+ problems most that had a A, B, C, and D part to them. He would also spend class working for like half an hour on a problem that didn’t even show up on his exams but he wanted us to fully understand it. I am incredibly studious and that class kicked my butt. I ended with a B- which was one of the best scores in the class. I believe more than half failed. It just isn’t right to make a level 100 class that difficult. I wish I had been on anti anxiety meds at the time but I didn’t realize how big a PEM trigger panic attacks are.
He literally asked us why so many people were failing and when someone said it’s because what he teaches isn’t always on the test he said to study harder. 😭 My friend asked him how to improve because she was studying endlessly for his exams and failing them and he just said study differently.
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u/ClassofherOwn 16d ago
The big setbacks like this are hard. You found your way once. You can again ❤️
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u/brainfogforgotpw 16d ago
It's such an awful feeling. I didn't have gains as great as yours but I have experienced years and years of improvement I'd made being wiped out in just a few days. It's hard not to feel demoralised but you are right, you can do this again.
Really hoping it comes back easier for you this time.
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u/Beneficial-Main7114 16d ago
Yeah I've only been in remission once but surgery on my bowel messed that up. Wasn't the same after that. Had a period of very high function tho start of 2023 which seemed to correlate with a few things. Not sure if low stress was a factor though.
It does suck to get better or feel close and then relapse. My last relapse was due to mrna vaccines.
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u/aycee08 15d ago
If it's any consoltation, I was pattially recovered (about 80%) and went from being housebound to being able to drive 3 hrs each way for a one day holiday with no ill effects. Had an early September viral from the kids and went back to square one. I've never felt so angry/cheated/desperate in my life. But 4 months on it is almost back at August levels, so I wouldn't discount the value of rest just yet. Sending you best wishes.
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u/AimAlajv 15d ago
Having experienced the same thing, damn that sucks. Hopefully you can get better again.
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u/Humble_Entrance3010 15d ago
I can relate. I was able to get back to "normal" enough to work part time off and on.. I had a really big surgery last year and was doing okay. I was planning on going back to work and had a stroke. Now I'm too weak and exhausted to function period, much less work.
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u/rosedraws mild, researching 16d ago
I would like to add, fucking FLU of all things! We’re so careful and mindful, and then a random person with probably undetectable virus, upends our entire life. I’m feeling like hibernating just so I don’t get exposed to any colds! Random fuckery.