I was a weightlifter, artist, singer, very active, travelled at least 5 times a year.
then I got sick in december 2023 and never got better,
I now have cfs/me (chronic fatigue syndrome), pots, mcas, light and sound sensitivity, dizziness, debilitating brain fog, joint and muscle pain, tinnitus, and the list goes on.
spend all day in my home but mainly in bed.
can’t work, can’t leave my house without someone pushing me in a wheelchair, and barely function.
AMA
26F perfectly healthy to chronically ill and 95% bedbound AMA
r/AMA
Comments
what does the dr say about this?
What kind of sickness triggered your illness? What treatment are you receiving? I have mild/moderate ME/CFS and my worst fear is becoming severe. I hope there will be some improvement for you!
Sorry not a question but omg haha you sound just like me!! December 2023 for me too! Fellow potsie here now haha. Hope you’re doing okay 🙂 Sending you a hug x
Have you been tested for Lyme disease?
Whos your caretaker? Besides good health, what do you miss the most?
i’m really sorry youre going through this and i pray u get better soon!
have u tested for certain viruses/parasites that may have been activated after ur infection with covid? some infections are opportunistic, which means they live dormant in your body and do nothing until your immune system weakens (covid in ur case) then take over
or maybe even autoimmune?
Check out GBS (Guellain barre syndrome).
Sounds like MS
What are some small things that help improve your day?
Have u been tested for lyme disease? I had both at same time and had to beg md for test. No tick or rash found btw.
Try branch chain amino acids, creatinine mono, super greens supplement and NAC, mix into one liter of juice or flavored water, refrigerate for taste and let resolve. 1 to 2 weeks if not sooner you will have everything back ✌🏻.
Chronic illness sucks ass, I’ve been there, still am ;(.
What sort of things have you tried to get better?
try a tablespoon of pure organic coconut oil every 4-8 hrs, I’ve seen this reverse alzheimer’s in people, it might be worth a try
What happened to your work and social lives?
[removed]
Did you get a covid vaccine?
Go carnivore then I gain to lose and it’s helped a whole lot of people get better for many of the things you mentioned. Look up YouTube Michaela Peterson.
Have you been genetically tested for things that could predispose you towards post viral illnesses?
This happened to me after my first Covid infection. I’m still sick 4 years later
What was your concept of what long covid/MECFS was like before you got sick? Is it what you imagined?
Im in a similar situation and timeline. Got sick likely because of mold exposure summer of 2023 and have been bedridden for most of the time. Just got diagnosed with Chronic Inflammation Response Syndrome (CIRS). It’s a rare but treatable illness. Have you ever looked into that? Might be worth looking into.
Edit: just rereading and your symptoms sound like they fit the criteria for sure.
Check out Makayla Peterson. She had to go to the lion diet. She had a lot of summer things you have.
I’m sorry this happened to you 🙁 I’m 30m and I’ve had what I suspect is long-term post viral illness since I was 8 years old with most of the symptoms you mentioned. Growing up was a nightmare because of it, nobody believed me that I felt sick all the time
I’ve got sick back in October, 2023. While my Long COVID case isn’t as bad as yours, it’s also turned my life upside down.
I’m in a similar boat. What keeps you going?
Have you looked into DNRS? It’s a brain retraining program and a lot of people in the classes with me had CFS/pots/chemical sensitivity. It changed my life (from severe food intolerances) and I met people who really improved their symptoms! A friends mom went from having such bad chemical sensitivity she had to live alone/away from her family and DNRS completely cured her. It’s worth watching some YouTube videos!!
Long hauler here also 3 years …
I was bedbound unable to walk or talk with 80 symptoms. Significant improvements through diet overhaul, rest and gut healing now down to 4 symptoms.. I did an AMA also 👍
Stay strong friend. Lighter days are coming
https://www.reddit.com/r/covidlonghaulers/s/7W5skzFo8i
What kind of games do you play? Always looking more more people to game with who are available during normal work hours and may not have good enough hands to keep up with the kids these days. Being in stuck in bed too tired to move gets BORING.
What tests did they do that got you to this diagnosis?
I am almost in the same boat as you. Chonic issues and now I have been sick for 10 months, all medical tests came back negative. Mri, ct, bloodwork, stool test, sibo test… I have debilitating headaches with fatigue, brain fog and food sensitivities, cannot study, cannot work, no social life, can hardly have conversations. Since all tests are ok they suspect it is a migraine, but no drugs helpes so far. I wish you all the best and keep fighting.
Not sure about the state (or country?) you live in, I looked but didn’t see it mentioned. As far as managing the pain, I’m not sure if you’ve tried ketamine treatment, infusions specifically, though they can be pricey to do the initial series to get you started (4-6 infusions then they get spaced out).
I’ve been dealing similar pain issues since 2012 and was bed bound for a few years. Diet helped me tremendously reduce pain and I was more functional. But then trauma caused my pain to increase in 2019 and I looked to ketamine treatments in 2021.
They’re not everyone’s cup of tea, and they’re pricey and not covered by insurance. I personally couldn’t handle the infusions cause the hallucinations caused panic because the feeling triggered a ptsd thing (ironically it’s often used to treat ptsd). I did much better with the lower dose home treatments, but those are legal in a lot less places than the infusion centers – which I believe most states offer and many countries.
Just thought I’d see if you’d looked into it as far as relief from your pain?
Also, have you tried acupuncture? It was effective for me though again, not covered by insurance and pricey…and something that needs to be maintained on a regular basis to feel the effects.
I’m sorry for what you’re going through, I know it’s hard. Hang in there.
I know this may seem far off, but hear me out…
I suffered an intense stomach bug in 2012 and instead of getting better I got so much worse. Also dx’ed with me/CFS, pots, mcas, horrible migraines, joint pain, gastro issues, bedbound, etc. 8 years later a CT with contrast and a very observant vascular surgeon diagnosed me with Nutcracker Syndrome (left renal vein entrapment). I had only a few miinor classic symptoms, googling the syndrome never would have led me to think this was it, not in a million years
I had a kidney auto transplant (they moved my left kidney to my right pelvis) and everything went away. Doctors didn’t understand why, couldn’t explain why these symptoms that looked like so many other valid labels were presenting this way.
5 years later, all those issues and previous diagnoses are null and void.
Nutcracker is rare and may not be what you have, but vascular abnormalities can cause a crazy host of issues in our bodies. Maybe worth a check?