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Long COVID Moderate → much betterIll 4 years before improving or writingNeeds ongoing treatment

Long COVID with chronic pain and fatigue, much better after a combination of medications

Condition
Long COVID
At worst
Moderate (mostly housebound)
Ill before improving or writing
4 years
Last post
Oct 2026
In their words
  • Condition: Long COVIDI've had it since June 2022 In context ↗
  • At worst: Moderatea mast cell stabilizer took me from couch bound to able to walk 30 mins In context ↗
  • Now: Much betterI went from being in pain 24/7 and having constant adrenaline rushes to now working remotely full time, strength training 3x a week and I'm slowly building up tolerance for upright cardio/walking In context ↗
  • Began after: COVIDclearly had this forever for covid 2022 ramped everything up
Read from 12 of their posts and comments; links to the 10 this page draws on

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Summary

Crest 11710 has had long COVID since June 2022, with chronic muscle pain and fatigue on top of underlying hEDS. After four years of pushing through, a combination of propranolol, antihistamines, ketotifen, LDN and Mestinon eased 24/7 pain and constant adrenaline rushes. They now work remotely full time, strength train three times weekly and build up walking, though not in remission. Back-to-back infections in 2024 set them back.

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What they tried

Their words about each treatment
  • pacing · HelpedThe biggest things that have helped with pain for me personally are pacing, not pushing through pain In context ↗
  • LDN / low dose naltraxone · HelpedLow dose naltraxone has really helped with my baseline pain levels. In context ↗
  • physio · HelpedLDN and *slowly* doing physio to strengthen around my joints helped me the most. In context ↗
  • light resistance exercise every other day · HelpedI've also found light resistance exercise every other day helpful In context ↗
  • smart watch · Not saidI use a smart watch to track my HR In context ↗
  • compression and electrolytes · Helpedwear compression, drink electrolytes etc since I have dysautonomia that contributes to my fatigue In context ↗
  • time · HelpedTime and pacing. After my initial infection and reinfection it lasted about a year both times for me. In context ↗
  • propranolol · HelpedI just started propranolol and I've found the adrenaline is quieter day to day. In context ↗
  • ketotefin · Helped a lota mast cell stabilizer took me from couch bound to able to walk 30 mins In context ↗
  • antihistamines · HelpedI only noticed a subtle difference with antihistamines In context ↗
  • pepcid · HelpedThe combo of antihistamines, pepcid, ketotefin, LDN, propranolol and mestonin has supported me to feel better In context ↗
  • mestonin · HelpedThe combo of antihistamines, pepcid, ketotefin, LDN, propranolol and mestonin has supported me to feel better (though not in remission). In context ↗

Approaches: H1 antihistamines · H2 blockers · POTS medication · Antihistamines & MCAS · Beta-blockers · Pacing · Physiotherapy and rehab

Their path

Very severeSevereModerateMildNear normalRecovered2.5 y3 y3.5 y4 y

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. The chart starts 2.5 years after onset: the story doesn’t say how ill they were before that. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.

Show as a table
WhenWhat happenedWhere they wereAfter
June 2022long COVID after infection, on top of hEDSI've had it since June 2022. In context ↗Not stated
2024back-to-back cold, norovirus and a virusIt has been a year since these back to back infections and I am still crawling my way back to my previous baseline. In context ↗Moderate
2026pain 24/7, constant adrenaline rushes, quit the gym, couch boundI went from being in pain 24/7 and having constant adrenaline rushes In context ↗Moderate
March 2026adrenaline quieter on propranololI just started propranolol and I've found the adrenaline is quieter day to day. Now I'm just tired (yay?) In context ↗MildPropranolol (Inderal)
May 2026improved once on the right medicationsThings improved for me once I was able to access the right medications. In context ↗MildKetotifen (Zaditen)
September 2026working full time remotely, strength training, building walking tolerancenow working remotely full time, strength training 3x a week and I'm slowly building up tolerance for upright cardio/walking In context ↗Mild

Adverse events

Symptoms mentioned

Their words about their symptoms
  • Pain & fibromyalgiaI had chronic muscle pain prior to infection because of the underlying heds In context ↗
  • Post-exertional malaiseContinued to push through, what I now know to be, rolling PEM. In context ↗
  • Brain fogI still get it, but mostly from pots (which is currently unmedicated) and no where near as bad. In context ↗
  • POTS & dysautonomiaI also have diagnosed pots. In context ↗
  • Mast cell (MCAS) & allergiesketotefin for mcas In context ↗
  • Headaches & migraineto manage cognitively fatigue and prevent headaches In context ↗
  • Muscle weaknessnow also muscles that fatigued with little exersion In context ↗

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