Chronic pain for 20 years, ME/CFS and POTS worse after COVID, some improvement with CPAP
- Condition
- ME/CFS
- At worst
- Not stated
- Ill before improving or writing
- 4 years
- Last post
- Feb 2026
In their words
- Condition: ME/CFS
got a cfs diagnosis in the end
In context ↗ - Now: Somewhat better
some days I can leave the house
In context ↗ - Began after: COVID
I had fibro for 20 years before catching Covid in 2022.
In context ↗
Read from 34 of their posts and comments; links to the 14 this page draws on
Summary
Owl 60705 had fibromyalgia and chronic pain for 20 years before catching COVID in 2022, when ME/CFS and POTS symptoms increased. LDN looked promising in 2023 but a second trial did nothing. Treating severe sleep apnoea with CPAP was a life changer, and by 2025 a combination of LDN, Abilify and Mestinon helped a little, though they could leave the house only some days.
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What they tried
What they credit
Also tried
Their words about each treatment
- CPAP · Helped a lot
Got a test and found out I had severe sleep apnea. CPAP is a life changer.
In context ↗ - Paxlovid · No change
Got paxlovid, was still sick for 8 weeks and got increased POTS and ME symptoms out of it. I wish paxlovid helped more than it did.
In context ↗ - LDN · Helped
I’m on month 2 of LDN and I have to say it’s really promising! ... my normal fibro symptoms have lessened
In context ↗ - Intermittent fasting · Worse
tried intermittent fasting a couple of years back and was constantly feeling sick as a dog.
In context ↗ - physiotherapist · Worse
I went to a physiotherapist for months last year and it was so hard because he didn’t get that even if I tolerated the exercises ok on the day, I could be worse the next day
In context ↗ - propranolol · Helped
I wake up with my heart going at 140bps. Basically walk around eating, drinking frantically and slamming propranolol until I can calm down
In context ↗ - steroid inhaler · Helped
Luckily my doctor gave me some strong steroid inhaler thing, and last time I got sick it seemed to ward off the worst of the cough.
In context ↗ - muscle relaxers · Helped
I got prescribed muscle relaxers, it’s the only thing that helps.
In context ↗ - THC · Worse
I used to use THC but it aggravates tachycardia so have to be really cautious with that now.
In context ↗ - semaglutide · Worse
Semaglutide just made me constipated and have awful bloating and an awful sulfuruous burping issue haha
In context ↗ - abilify · Helped
My combination of LDN, abilify and mestinon seems to help a little.
In context ↗
Approaches: POTS medication · Other drugs and medicines
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. The chart starts 3.2 years after onset: the story doesn’t say how ill they were before that. 2 steps say too little to place on the scale and are only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 2022 | Caught COVID; ME/CFS symptoms followedI had fibro for 20 years before catching Covid in 2022.In context ↗ | Not stated | |
| 2023-07 | LDN started to help fibro symptoms and moodI’m on month 2 of LDN and I have to say it’s really promising!In context ↗ | Not stated | Low-dose naltrexone |
| 2025-03 | Some days able to leave the housebut some days I can leave the house, so I’m not complaining (too much)In context ↗ | Moderate | |
| 2025-10-21 | Small improvement on LDN, Abilify and MestinonMy combination of LDN, abilify and mestinon seems to help a little.In context ↗ | Moderate | Low-dose naltrexone |
Adverse events
- Cannabis (THC, marijuana)“I used to use THC but it aggravates tachycardia so have to be really cautious with that now.” In context ↗ Heart rhythm problems
- Paxlovid / nirmatrelvir“Got paxlovid, was still sick for 8 weeks and got increased POTS and ME symptoms out of it.” In context ↗ Made symptoms worse
- Intermittent fasting“tried intermittent fasting a couple of years back and was constantly feeling sick as a dog.” In context ↗ Made symptoms worse
- Physical therapy / physiotherapy“even if I tolerated the exercises ok on the day, I could be worse the next day and even all week until our next appointment” In context ↗ Made symptoms worse
- Semaglutide (Ozempic, Wegovy)“Semaglutide just made me constipated and have awful bloating and an awful sulfuruous burping issue haha” In context ↗ Gut side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I first realised I got cold symptoms the day after going out to do something when I had to take a Covid test each time I felt ill.
In context ↗ - POTS & dysautonomia
OI and adrenaline surges make me feel so shitty.
In context ↗ - Heart symptoms & palpitations
I wake up with my heart going at 140bps.
In context ↗ - Sleep problems
I had severe sleep apnea.
In context ↗ - Pain & fibromyalgia
I have fibromyalgia (among other things)
In context ↗ - Gut problems
then I’ll feel nauseated from eating and POTS symptoms
In context ↗
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