u/BellaPona

Summer 2025 was the first summer in a long time that I could FINALLY enjoy being out during the heat without melting, after doing the work of losing 75lbs. It felt SO GOOD! Then this winter I had to get the “you melt in the heat” illness. How fun. It’s 75 degrees in my house and my HR shoots up like 50bpm just sitting up. I don’t even feel that hot.

Not only is everyone in my life seemingly going through an illness of some sort at the moment (pregnancy related illness, chronic autoimmune, broken limbs), multiple people in my circle are showing signs of post-acute illness and recurring symptoms. I got hit the worst which is why I’m here but my boyfriend and I both got a that mysterious cold that went around some states at the same time. I was already very clearly ill and declining before that but my boyfriend since then has been having minor signs of post-acute illness and even POTS type symptoms, just like I have (though mine are much worse). I also have another friend who has “had strep four times this year” and keeps thinking she has strep. Her doctor prescribes her anti-biotics and then a month or two later the “strep” will come back. I worry about her, though I’m trying not to project my own illness on to her. One thing I’ve noticed across the three of us is this; all of us are displaying the same mental illness symptoms. Where spring here in the US and an increase in sunshine typical brings us happiness and reinvigoration (live in a state with really bad seasonal depression rates) we’re heading the opposite direction. We’re all incredibly stressed and feel like we’re one step away from losing it. This is a dramatic departure from normal. I cried for months initially warning people I thought I was going to get thrown in a mental institution. Now my bf and friend are showing similar rates of stress and anxiety. I’m honestly getting paranoid that something is happening and I just don’t know what. COVID is a huge cause for chronic illness right now so that’s part of it but the mental aspect is a mystery. Anyone else feeling like this right now?

I had what felt like an adrenaline rush last night after not having one for at least a month or two, only my HR was low. I’m currently not on beta blockers BECAUSE I thought the beta blocker was making my BP and HR too low and it predictably went high and stayed high after stopping. However last night I was shaking with adrenaline and sweating like I was having a heart attack, heart hurting, look down at my watch and it says 53 bpm. That’s how low I get while sleeping. One time I tried to sit up and it shot up to 140bpm. It only did that once but it was freaking me out that my bp was so low for like hours while awake. Checked my watch this morning, it stayed exactly at that number all night, until this morning of course when it rises to wake me up. Was my body trying to make me sleep by dropping that low? I haven’t had an episode like that since the beta blockers. I was also insanely well hydrated.

How come there are no celebrities with ME/CFS or Long Covid? Especially Long Covid, with how social celebrity life is. Do they have access to treatments that actually work and for some reason we don’t have access? How are they able to hide it so well?

This may seem like a silly question but I’m newly diagnosed and haven’t had a chance for actual treatment yet. I have convulsive pre-syncope (thanks POTS), PNES induced by stress, and constant tremors/tics/shakes. I also get the PTSD ward veteran like jumping at any sudden or loud sounds. Going to sleep at night means I could be perfectly still then as soon as I close my eyes I’m fighting through a maze of jolts and whole body movements. My question is, for the last couple of days I’ve had neuropathy type sensations in my arms and legs and head, muscle twitching in my limbs, weird random joint pain, and my thighs are super tight/kind of hurt. My limbs feel like lead and are hard to lift but I’m wide awake. So far my FND has seemed nervous system motivated, it truly gets going when I get “excited” in any way that’s too much. Especially negative emotions. The only real break I’ve had from FND was after being given Trazadone in the hospital. Then I got a nice 7 day break of almost feeling normal! Even my POTS symptoms improved. Since I’ve been back I’ve just gotten worse. How common is that kind of pain in FND? I’m honestly afraid I don’t even have it, and just got slapped with the label.

I was doing my nails with gel polish like I always do, and when I got finished with my right hand I noticed it’s significantly more swollen/red at the fingers than my other hand. I was using a heat lamp like they do at the nail salon so I thinking that maybe I just accidentally caused some really bad pooling from the heat? I haven’t had this problem before while doing my nails.

Anybody else notice their crashes are only during the hormone changes that start within the 7-4 days before their period and then during? What’s up with that?

I never thought I’d get labeled as a nut case, or have my family stop believing in me. I believed I’d have support while figuring this out/working towards healing because I see others online receive that from their families. And I’ve never had tension with my family. But no, I’ve essentially had a bunch of my diagnosis changed after a hospital stay despite all the proof of my unstable HR and blood pressure (always low, was told straight to my face that my BP is normal and doesn’t drop upon standing. Watched it happen on monitor with my own eyes. Apparently going from 127/80 while sitting to 105/70 to standing is normal). I’m feeling at my worst pain wise which hasn’t happened for a long time because I’ve been protecting my baseline so carefully but my family has started pushing me. Today I heard the dreaded “you feel worse because you aren’t moving around enough”. How do I make them believe that being pushed just makes me worse? I’m bed bound 99% of the day, in the hospital I was able to focus on spending my energy towards graded exercise because I had a commode but now my parents refuse to get me one. They are getting tired of wheeling me back and forth to the bathroom. I’ve been left out to dry by my health care providers, so it suck’s to see the same happening with the people meant to be my caregivers.

Funnily enough, my boyfriend is experiencing the same symptoms as I am now. We’ll see how much differently he’s treated/how much clearer or murky is treatment goes. I hate being a woman.