Long COVID
Severe → relapsedIll 18 months before improving or writingNeeds ongoing treatment
Bedridden with long COVID, slowly improved then relapsed after stress
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 18 months
- Last post
- Jul 2026
In their words
- Condition: Long COVID
My long covid is almost entirely hyperPOTS at this point.
In context ↗ - At worst: Severe
I became bedridden in April-May of 2023
In context ↗ - Now: Relapsed
I was bed ridden, then eventually worked remotely for 2 years and now I’m back in a flare again.
In context ↗ - Began after: COVID
After getting covid February 2022, within 6 months, I went to see a psychiatrist for intrusive thoughts.
In context ↗
Read from 129 of their posts and comments; links to the 42 this page draws on
- Apr 2026
- Jan 2025
- Jul 2023
- Mar 2025
- Aug 2023
- Aug 2023
- Aug 2023
- Aug 2023
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- Oct 2023
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- Aug 2025
- Apr 2026
- Jul 2026
- Mar 2024
- Oct 2023
- Aug 2024
- Feb 2026
- Oct 2023
- Aug 2023
- Aug 2023
Summary
A nurse in their thirties developed long COVID after a February 2022 infection, and after a January 2023 reinfection they became bedridden by spring 2023 with hyperadrenergic POTS. Over two years they slowly improved with time, exercise, water and salt, working remotely and starting a master's while still largely housebound. A stressful practicum in January 2026 triggered near-total insomnia, managed only with Xanax, and they faced losing their job again.
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What they tried
What they credit
Also tried
baking soda bath· Helpedmeditation· Helpedgrilled/Mediterranean diet, no alcohol, no smoking, berry and spinach smoothies· HelpedXanax, Valium and Klonopin· HelpedXanax, Valium and Klonopin· HelpedXanax, Valium and Klonopin· Helpedtherapy· Helpedsalt packets, water and LMNT· No changeturmeric· No changevitamin d· No changeprobiotics· No changesupplements· No changeEffexor· Worsepropranolol· Worsedexamethasone· WorsePPI medications· Worseacupuncture· Worsevitamin K· Worseguanfacine· Worseivabradine (Corlanor)· Worsedoxepin· Worseazelastine spray· Worsetrazodone· Worsestellate ganglion block (right side)· Worsecipro and erythromycin· Much worsecipro and erythromycin· Much worsevaltrex· Much worsepacing· Not saidsonata· Not saidmagnesium glycinate· Not said
Their words about each treatment
- Effexor · Worse
I tried Effexor and that made it worse.
In context ↗ - working out, walking and the rowing machine · Helped
It’s mainly just time and exercise that has helped me.
In context ↗ - cipro and erythromycin · Much worse
I tried taking cipro and erythromycin and it set me back to square one.
In context ↗ - valtrex · Much worse
I took valtrex and it made me have some weird thoughts and basically spiral. I think I almost had full blown psychosis.
In context ↗ - propranolol · Worse
Propranolol actually made my anxiety way worse and turned my face beet red.
In context ↗ - salt packets, water and LMNT · No change
I have pots and tried salt packets. I don’t think they helped that much.
In context ↗ - turmeric · No change
I take turmeric and vitamin d every day and try to do blueberry smoothies.
In context ↗ - vitamin d · No change
I haven’t really found anything to help. I take turmeric and vitamin d every day and try to do blueberry smoothies.
In context ↗ - baking soda bath · Helped
I recently started sitting in a bath with baking soda and I can’t believe how much it has helped.
In context ↗ - probiotics · No change
I tried probiotics and all kinds of supplements and it really was just time unfortunately.
In context ↗ - meditation · Helped
What helps me is distracting myself with a hobby, music, meditation.
In context ↗ - grilled/Mediterranean diet, no alcohol, no smoking, berry and spinach smoothies · Helped
I also stopped drinking alcohol and I don’t smoke. I try to eat healthy.
In context ↗ - pacing · Not said
I now have a remote job and pace myself.
In context ↗ - dexamethasone · Worse
I took dexamethasone to be tested for Cushings disease and I felt amazing at first. Then the rest of the week I had severe anxiety.
In context ↗ - PPI medications · Worse
I couldn’t take any PPI medications
In context ↗ - acupuncture · Worse
I tried acupuncture yesterday and today I’m having panic attacks and brain fog like I did in the beginning
In context ↗ - vitamin K · Worse
I even ordered a low dose and the GI upset for me was a problem every time.
In context ↗ - Xanax, Valium and Klonopin · Helped
Xanax is the only reason I’ve slept at all.
In context ↗ - guanfacine · Worse
Tried the regular guanfacine and it gave me dry mouth, irritability, and it didn’t sedate me or stop my surges not one bit.
In context ↗ - ivabradine (Corlanor) · Worse
ivabradine made me clammy and I felt like my muscles were getting stiff
In context ↗ - doxepin · Worse
I’ve tried Doxepin at a 3mg dose, which acts an antihistamine at that dose, and it was HELL.
In context ↗ - azelastine spray · Worse
Azelastine spray did the same exact thing to me.
In context ↗ - sonata · Not said
I’ve tried doxepin, sonata, magnesium glycinate, guanfacine and they’ve either made me worse or done nothing at all.
In context ↗ - trazodone · Worse
The trazodone makes me essentially non functional the next day. I’ve had severe anxiety since taking it as well
In context ↗ - therapy · Helped
Therapy has helped in some ways but has done absolutely nothing to prevent this latest set back
In context ↗ - stellate ganglion block (right side) · Worse
Yes, I did the right side and all hell broke loose. It made me worse.
In context ↗ - time · Helped a lot
Honestly just time. I can’t think of a single thing that actually helped besides trying to do the row machine when I felt well enough to try.
In context ↗
Approaches: Exercise and activity
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, with time counted from when the illness began. Hover or tap a point. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| February 2022 | COVID infection; intrusive thoughts and feeling 'off' beganAfter getting covid February 2022, within 6 months, I went to see a psychiatrist for intrusive thoughts.In context ↗ | Mild | |
| January 2023 | third COVID infection; much worse afterwardsafter my third infection in January 2023… I got way worseIn context ↗ | Mild | |
| April 19, 2023 | collapsed at work with resting heart rate 122, went down and lost their job, became bedriddenI became bedridden in April-May of 2023In context ↗ | Severe | |
| August 2023 | symptoms finally began easingFinally it starting easing up in august.In context ↗ | Severe | Time and spontaneous remission |
| October 2023 | started a remote job after 6 months out of work6 months later I just started a remote job.In context ↗ | Moderate | Time and spontaneous remission |
| December 2023 | crashed after dexamethasone taken for a suppression testI feel like I’m about to have an anxiety attack, coming out of my skin, derealization… the works.In context ↗ | Severe | |
| January 2025 | holding a full-time remote job, watching TV, starting an online master'snow I can hold down a full time job (from home), date (only sometimes, and VERY low level type stuff), watch tvIn context ↗ | Moderate | Time and spontaneous remission |
| August 2025 | still largely homebound but working from home and able to exerciseI’m still largely home bound, but I work from home now and can do some exercising.In context ↗ | Moderate | Time and spontaneous remission |
| late January 2026 | stress of final practicum caused a hard crash and complete insomniaI had a stressful event in late January that made me crash hard.In context ↗ | Severe | |
| April 2026 | stellate ganglion block on the right side made them worseYes, I did the right side and all hell broke loose. It made me worse.In context ↗ | Severe | |
| July 2026 | months-long flare with no unmedicated sleep, facing job loss and medical billsI had almost 2 years of doing decent. ... But I had a stressful event in January that caused me to completely stop sleepingIn context ↗ | Severe |
Adverse events
- Venlafaxine (Effexor)“I tried Effexor and that made it worse.” In context ↗ Made symptoms worse
- “After the surgery I went down at work.” In context ↗ Made symptoms worse
- Ciprofloxacin (Cipro)“I had severe anxiety attacks with cipro” In context ↗ Mood or psychiatric effects
- Erythromycin“the erythromycin gave me gastroparesis that left me bed bound for a week” In context ↗ Gut side effects
- Propranolol (Inderal)“I tried propranolol for pots and had an allergic reaction to it.” In context ↗ Allergic reaction / anaphylaxis
- Valtrex / valacyclovir“I took valtrex and it made me have some weird thoughts and basically spiral.” In context ↗ Mood or psychiatric effects
- “I took accolate, a sister medication, and it really messed me up for a long time mentally.” In context ↗ Mood or psychiatric effects
- Corticosteroid pulses“I took dexamethasone to be tested for Cushings disease and I felt amazing at first. Then the rest of the week I had severe anxiety.” In context ↗ Mood or psychiatric effects
- Acupuncture“I tried acupuncture yesterday and today I’m having panic attacks and brain fog like I did in the beginning” In context ↗ Mood or psychiatric effects
- Guanfacine“Tried the regular guanfacine and it gave me dry mouth, irritability, and it didn’t sedate me or stop my surges not one bit.” In context ↗ Side effects
- Ivabradine“ivabradine made me clammy and I felt like my muscles were getting stiff” In context ↗ Side effects
- Doxepin (Sinequan, Silenor)“it was HELL. It exacerbated my hypervigilance, anxiety, and I was wide awake.” In context ↗ Mood or psychiatric effects
- Azelastine (Astepro)“Azelastine spray did the same exact thing to me.” In context ↗ Side effects
- Clonazepam (Klonopin)“I’m trying klonopin for sleep and it’s making me feel sick as a dog.” In context ↗ Side effects
- Trazodone (Desyrel)“The trazodone makes me essentially non functional the next day. I’ve had severe anxiety since taking it as well” In context ↗ Mood or psychiatric effects
- Stellate ganglion block“Yes, I did the right side and all hell broke loose. It made me worse.” In context ↗ Made symptoms worse
- Alprazolam (Xanax)“I have some withdrawals from the Xanax during the day now too” In context ↗ Withdrawal problems
Symptoms mentioned
Anxiety & low moodBrain fogGut problemsHeart symptoms & palpitationsLight & noise sensitivityNeuropathy & tinglingPOTS & dysautonomiaPost-exertional malaiseSleep problemsTinnitusVision problems
Their words about their symptoms
- Post-exertional malaise
Too much exertion causes awful flares though.
In context ↗ - Brain fog
today I’m having panic attacks and brain fog like I did in the beginning
In context ↗ - POTS & dysautonomia
I have hyper pots (officially dx with tilt table)
In context ↗ - Sleep problems
since January I don’t sleep. I mean I don’t sleep at all without a benzo.
In context ↗ - Gut problems
I’m no longer bed ridden with terrible stomach pains from hell
In context ↗ - Light & noise sensitivity
I still get over loaded in crowded places like loud restaurants
In context ↗ - Heart symptoms & palpitations
Every time I go lay down for sleep: chest pains, shocking sensations in my chest area
In context ↗ - Neuropathy & tingling
The pins/needles sensations still come and go
In context ↗ - Anxiety & low mood
I have POTS, tinnitus, adrenaline dumps that are insane, and severe depression/anxiety.
In context ↗ - Tinnitus
The tinnitus is still kicking hard.
In context ↗ - Vision problems
and saw tunnel vision all the way to my desk
In context ↗
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