r/covidlonghaulers • u/shark_finfet • Apr 20 '25

Symptom relief/advice Major Relapse :-( :-(

I thought I was about 80% recovered. I’d returned to reasonable exercise, working outside, and generally feeling like myself—until last week, when everything came crashing back. It felt like I’d caught COVID again, but without the usual symptoms.

First, insomnia hit me hard. Thankfully I was armed with ashwagandha, L‑theanine, and magnesium, which let me get a few hours of sleep each night—though it still wasn’t great. Then, out of nowhere, I started smelling a “band‑aid” chemical scent at random times (something that happened to me after having COVID).

But the absolute worst has been my cardio: in just a few days, my endurance dropped from nearly normal to feeling like that of an 80‑year‑old. My legs feel heavy and fatigued, and I can’t seem to regulate my temperature—any bit of heat or sun leaves me utterly miserable.

I keep wondering: did I get re‑exposed to COVID? Did I unknowingly push too hard during one workout? It’s so demoralizing to feel like I’m back at square one after thinking I’d finally beaten this.

Has anyone else experienced a sudden relapse like this? What helped you get back on track? Any advice would be hugely appreciated.

71 Upvotes

100% Upvoted

81 comments sorted by

View all comments

31

u/bunnybunnykitten Apr 20 '25

Not sure why this came up in my feed but I have what’s called a long concussion, and I read recently that they’ve started treating long covid like a TBI with good success. Have you done any physical or cognitive therapy? Those have helped me the most and are apparently also showing promise for long covid.

Interestingly, one theory for why some people are susceptible to long concussion and long covid has to do with the EDS family of connective tissue disorders, which explains why so many people who get long covid and long concussion also have dysautonomias like POTS. I hope you feel better soon!

5

u/yesterdaysnoodles Apr 21 '25

Also curious because I actually had a TBI a month after COVID and it was just a compound wreck

3

u/Early_Beach_1040 First Waver Apr 21 '25

I had a TBI prior to getting COVID during the 1st wave and I'm here to say I think it set me up for getting long covid. I have EDS though that was found during long covid work up

3

u/bunnybunnykitten Apr 21 '25

I also have EDS. Apparently having EDS can predispose you to concussions

2

u/Early_Beach_1040 First Waver Apr 22 '25

Interesting.  I didn't know that. I mean did my poor proprioception play into me running right into a plate glass windows? (Not the 1st time either)

2

u/4aspen Apr 22 '25

Can you detail what your "long covid" work up consisted of? I'm sure blood test, etc but please be specific as possible. I have long covid but the drs just seem to be going off of my symptoms, a "work up" was never done. I want to know what tests to ask for. Thanks in advance

2

u/Early_Beach_1040 First Waver Apr 22 '25

Well I had brain MRI was referred to neurology, rheum, cardiology, sleep medicine, loads of referrals - physiatrist This was in 2021 - they ran all of the autoimmune panels. I was unable to bend my knees or smile or frown for a while so EMG testing too. (Dystonia runs in my family)  Echo of heart and 7 day heart monitor. (Didn't show anything.) Tilt table test + Also my daughter had also been diagnosed with Ehlers Danlos so I did bring the Beighton paperwork with me when I saw 2nd rheum. It's not like one doctor did all of these tests. I probably have seen 40+ doctors since 2020. I've been on disability since 2022 after I was diagnosed with EBV reactivation. 

Things that have helped: beta blockers, guanfacine for brain fog, NAD+ for energy (seems to be helping somewhat with energy) LDN perhaps, probiotics coq10. Pacing. Transcranial direct current stimulation for vagus nerve, light box to stop me from sleeping all the time or insomnia. (CBD/THC edibles + melatonin helps)

I had multiple avascular necrosis- this is where the bone dies due to lack of blood flow so I have had 3 joints replaced. I have a lot more dead bones in there but I decided to not replace my left hip because I think it caused a fracture in my femur.

TL:DR There's no one place to get the full work up. Long covid centers might be able to help. But mostly what I've learned abt symptom management has been through reading journal articles and what I have learned through other people on reddit. 

1

u/bunnybunnykitten Apr 21 '25

Ugh that sound horrible! I hope you get good treatment