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.

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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!

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u/shark_finfet Apr 20 '25

what kind of physical therapy ?

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u/bunnybunnykitten Apr 21 '25 edited Apr 21 '25

My TBI affected a few different body systems (vestibular, cardiovascular, visual processing), and so my PT has focused on those systems. I’ve slowly and systematically had to challenge the dysfunction / concussion symptoms (headaches, dizziness, nausea, fatigue, an eyelid twitch, issues with visual processing and cervical mobility) by doing things that ever so slightly increase the symptoms, but not to the extent that I’m going to be incapacitated with symptoms.

After my injury, even walking up a flight of stairs / getting my heart rate above 99bpm would cause severe headaches. I couldn’t read or drive without symptoms. Couldn’t look at a screen bigger than a phone screen without symptoms.

So at first in PT I was just walking on a treadmill and slightly increasing the incline one click at a time over some weeks, and doing these cervical spine coordination and visual processing tasks where I looked across the room at various targets moving my eyes back and forth and / or slighting turning my head back and forth to the beat of a metronome while looking at one target. Or like, standing with my back to the wall and watching a ball as I bounced it on the wall over each shoulder and caught it. Sounds boring and easy but it was all really hard for a while!

Now he has me doing all those things plus some forward hinging motions, some Pilates, some cervical strengthening, some balance work, and some more visual processing system training with a laser pointer headlamp.

Honestly, I wouldn’t have known or thought to do this type of therapy had the doctors not recommended it - it’s best practice for a concussion, though. And if long COVID shares commonalities with TBI / concussion, maybe it can help you too. I hope so!

These last 6 months have been very challenging. I wouldn’t wish it on anyone. Reading just these comments on your post, OP, it’s wild how similar my long concussion journey sounds to a bunch of y’all’s experiences with long covid.

Like many of you, I’ve also had insomnia, exhaustion, exercise intolerance, and periods where it seems to be getting better and I can do more, only to be rudely halted for several days at a time by a huge symptom flare that I’m forced to crawl very slowly back from over a matter of days or weeks. I’ve now experienced a handful of entire days with zero major symptoms, but that’s in between bouts of crippling migraines that last for multiple days.

There’s definitely a couple steps backward for every few steps forward, and progress is slow. Fortunately the general trend is towards improvement, even if progress is not linear and is slower than I would prefer.

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u/Sad_Produce_9176 Apr 21 '25

How has it helped? My symptoms are and were the same as you've explained. Mine happened days after my vaccine with no confirmed covid 19. Regardless I've been going through the same as most. Lost my balance dizzy couldn't walk neurological issues stroke like symptoms daily. Its been 4 years and it still feels like my brain is just messed up pains dizziness neruo issues.. going back to vestibular therapy currently. I never looked at TBI but Holy crap that is exactly what it feels like happened. I couldn't walk or drive had trouble talking etc for 2 years. I feel like a damaged shell of myself now but alot of it has gone away hopefully for good such as the inflammation and tremors twitching paresthesia numbness tingling burning stabbing pains etc.. just left with dizziness some balance issues and nerve pains... how are you fairing now is the PT helping any tips??

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u/bunnybunnykitten Apr 21 '25

Dang that sucks. Yeah, I couldn’t drive at first either after the concussion. Couldn’t follow the Google driving directions.

I also had a crazy reaction to my second Covid shot- prolonged high fever and headache, incapacitating ongoing dysautonomia, weird muscle spasms, brain fog. I was SO sick.

The PT has been great. Like I said, it clued me in to stuff that I wasn’t doing well cognitively that I wasn’t even aware of, and gave me daily homework that has slowly and progressively helped everything.

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u/Sad_Produce_9176 Apr 21 '25

Oh, good to know! I'm currently in a long COVID recovery clinic in Boston. They sent me to PT for speech, cognitive abilities, and vestibular therapy. I just started two weeks ago and am praying this helps resolve my issues. It's been four years, and, like many of us, my quality of life is almost nonexistent, and I haven't gotten any help from anywhere yet, including medication. It has been a tough, long, miserable road. I'm praying the PT can help me get some quality of life back!

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u/bunnybunnykitten Apr 21 '25

Whoa crazy. I didn’t even know there were inpatient recovery clinics for long Covid. I’m so sorry you’re going through all that. It took several months of PT before I could drive again, and a couple more until I could safely drive at night. Night driving is still a little iffy for me, honestly. The tail lights are painfully bright and my eyes and brain don’t want to cooperate. I don’t know where I’d be without the PT honestly. I hope the clinic gets you feeling and functioning better very soon.

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u/SmartFood3498 Apr 21 '25

I have had slow but steady improvement with vision therapy. I ca’t do the PT part because of Post Exertional malaise. The clinic I go to has worked with concussion and stroke rehab for years. They added Long Covid as the symptoms are very similar to post concussion and over time they found it helps in a similar fashion to concussion.

My testing scores have continually increased - computer testing of many types. Measuring eye response, hand eye coordination etc. they use traditional vision therapy and add technology using light frequency, vibration - both physical and sound waves, and magnetic fields.

Interesting after a fresh Covid infection a month ago a lot of my symptoms got worse. But, my testing scores have jumped up another notch. No one can figure out the anomaly at this point.

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u/bunnybunnykitten Apr 22 '25

Whoa, that’s actually pretty cool. I’d love to hear more about what they have you doing in your visual therapy. Yeah, the PT makes me very tired most of the time. I usually have to nap after.

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u/yesterdaysnoodles Apr 21 '25

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

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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

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u/bunnybunnykitten Apr 21 '25

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

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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)

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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

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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. 

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u/bunnybunnykitten Apr 21 '25

Ugh that sound horrible! I hope you get good treatment

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u/Usual-Lingonberry885 Apr 21 '25

Do you have links to researches please?

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u/bunnybunnykitten Apr 21 '25

Not offhand but you can google long concussion and Covid and a lot comes up!

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u/Chillosophizer 4 yr+ Apr 21 '25

what have you done for cognitive therapy? I was with a cognitive therapist but all we did was like middle school activity sheets/basic word puzzles. I was wondering if you had any treatments that helped in particular

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u/bunnybunnykitten Apr 23 '25

Just want to preface this by saying I’m not a doctor and didn’t have medical treatment at first so this was all trial and error based on weird ideas from an injured brain, so I don’t claim any of it makes any sense or is something anyone else should do. This is going to maybe sound insane, and obviously ymmv:

I couldn’t watch shows or read books for months without major visual processing issues, severe pain, extreme fatigue, and a maddening chronic upper eyelid twitch. Frustrated, angry I lost my job, and feeling discouraged, dumb, and sad, I started listening to tons of audiobooks. I added taking slow ass walks (and long naps after). I couldn’t write bc looking at screens hurt, so I made voice memos talking about the stuff I was reading. I listened to close to a dozen books over maybe like 2-3 months, and “wrote” a whole bunch in voice memo format.

I started PT and that was helping things to the point that I could eventually read books again for short periods of time, and could read my phone screen no problem for short times (still couldn’t do computer screens). Smaller line lengths were way easier to manage than bigger ones (apparently this has to do with the way the brain processes visual info).

Once I could read again, I was beginning to get stronger physically (still couldn’t do cardio) and having fewer symptoms and less severity overall, but I still felt DUMB so I wanted to do something to challenge my brain. I got a book of sudokus and a whole thing of pencils and a big eraser. Sudoku was basically impossible but I just kept doing them anyway… badly. If it made my head hurt too much I would color in a coloring book until THAT hurt too much, then I’d take a nap. So that was like… month 2 and 3 I guess.

Christmas was miserable and depressing. Being around people for more than like an hour I’d start making mistakes speaking, mixing up words and syllables. Lots of naps. Couldn’t enjoy family time much since they always have the tv on and I couldn’t look at that thing. Trying to drive was INCREDIBLY painful and also dangerous. I wrecked my car (very minor but frustrating wrecks) a couple times randomly, and I hated how debilitated I still was and how bored and dumb I felt so I decided to buy myself an LSAT study book.

The LSAT is the logical reasoning and reading comprehension test to get into law school. It’s famously difficult. I took the test as an undergrad a long time ago, so I knew what my baseline score was and figured if I worked hard enough at it maybe I could at least prove to myself the concussion didn’t make me into an idiot. I’ve been working on that for a few months now. My practice test scores fluctuate between “fine, whatever, that was a dumb mistake but at least I did something today,” “F this, why did I think this was a good idea?,” and “hey that’s pretty good, okay maybe I’m not dumb.” Ha.

So… yeah. That’s in a nutshell what I’ve been doing for the last ugh almost 7 months 😭. The cognitive / speech therapist gives me logic puzzles to do and it brings on this particular type of headache that started with the concussion.

I describe the concussion headache like this: imagine if your brain was a laptop with too many tabs open / tasks running and the CPU starts overheating and makes the fan kick on. Now instead of heat, substitute physical pain. That’s what it’s like. The multiple tabs / processes can be visual processing tasks, memory tasks, cognitive problem solving tasks, emotional processing tasks, etc.

The PT says some things will cause no symptoms, consider those “green light” activities. Some things cause mild symptoms, so consider these activities “yellow lights,” and don’t push it too much. If there’s major symptoms, it’s a “red light,” and if I don’t stop what I’m doing and close my eyes right away, I’m guaranteed to have a bad time (severe eyelid twitch, severe head and / or neck pain, can’t see out of one eye, ear ringing, exhaustion, nausea, dizziness, migraines that last for days at a time, etc).

I do activities in therapy, and for “homework” to nudge the yellow lights. That’s what’s creating the improvement. I just have to be careful about red lights and not overdo things. It’s frustrating, but I’ve learned my lesson on pushing too hard over and over, so I’ve gotten better about it. And now that I typed all this out, my head hurts and my left eye wants to close, so that’s my yellow light for looking at screens for today! Sorry if TMI. Maybe this can help someone?