Long COVID
Severe → much betterIll 5.5 years before improving or writingNeeds ongoing treatment
Long COVID with POTS, PEM and joint pain, much better now; rest and pacing helped
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 5.5 years
- Last post
- Jun 2026
In their words
- Condition: Long COVID
I had long covid for 3 yrs before getting pregnant.
In context ↗ - At worst: Severe
got a wheelchair, paced and was (with the help of the wheelchair) really selective about where I spent my energy
In context ↗ - Now: Much better
my PEM has basically gone ... two years post partum and I would say I’m doing better than before pregnancy in some ways, not in others
In context ↗ - Began after: COVID
I had long covid for 3 yrs before getting pregnant
Read from 12 of their posts and comments; links to the 11 this page draws on
Summary
Scottish woman who developed long COVID in early 2021, with burning joint pain, POTS and PEM, needing a wheelchair and unable to work. Aggressive rest and pacing brought slow, partial improvement over two years; painkillers did little. A pregnancy cleared most symptoms until three days after the birth, when they returned. Two years on her PEM has largely gone but joint pain and fatigue remain.
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What they tried
What they credit
Also tried
heated electric pads· Helped‘vegan’ collagen formation complex· Helpednew glasses· Helpedanti inflammatories (NSAIDs)· Helpedinositol· Helpedcompression clothing· Helpedice water· Helpedgentle supported stretching on the floor and using a gym ball· Helpedvideo games, crochet, drawing· Helpeddaily naps and a regular bed time routine· Helpeddihydrocodeine· No changegoing to a pool and walking around in the water· Not saidparacetamol· Not saidomeprazole, pantoprazole· Not said
Their words about each treatment
- dihydrocodeine · No change
took up to 120mg twice a day of prescribed dihydrocodeine and (really did fuck all for a year and a half
In context ↗ - wheelchair · Helped
got a wheelchair, paced and was (with the help of the wheelchair) really selective about where I spent my energy to prevent flair ups
In context ↗ - pacing · Helped a lot
if I’m conscientious about about how much energy I spend and resting I can keep all of my long Covid symptoms at bay
In context ↗ - aggressive rest · Helped a lot
This, after 2 years, has been the biggest factor in my improvement.
In context ↗ - heated electric pads · Helped
Heated electric pads really helped soothing pain too
In context ↗ - ice packs · Helped
at some points ice packs helped too
In context ↗ - going to a pool and walking around in the water · Not said
I also did some sessions of going to a pool and just walking around in the water
In context ↗ - paracetamol · Not said
just take paracetamol for flair ups that come in specific joints/areas
In context ↗ - ‘vegan’ collagen formation complex · Helped
it did wonders for my skin, I wouldn’t go without it now
In context ↗ - new glasses · Helped
literally the only thing that can be ‘cured’/‘helped’ is the vision thing just with new glasses
In context ↗ - anti inflammatories (NSAIDs) · Helped
Rest, pacing, anti inflammatories with pantoprazole
In context ↗ - omeprazole, pantoprazole · Not said
you HAVE to take something to protect your stomach (omeprazole, pantoprazole) if you’re taking NSAIDS longer than a few days
In context ↗ - vitamin D and K · Helped
Taking vitamin D and K after finding out I was low
In context ↗ - omega 3 · Helped
Taking vitamin D and K after finding out I was low, omega 3
In context ↗ - inositol · Helped
taking inositol for that has helped periods and decreases sugar craving
In context ↗ - anti inflammatory diet · Helped
going on an anti inflammatory diet
In context ↗ - garmin watch · Helped
Getting a watch that monitors Heart rate variation and heart rate (garmin) really helped me monitor hr and autonomic nervous system stress
In context ↗ - compression clothing · Helped
Things that help pots symptoms in the moment you are having them; ice water can reduce heart rate when it’s high, compression clothing
In context ↗ - ice water · Helped
ice water can reduce heart rate when it’s high
In context ↗ - gentle supported stretching on the floor and using a gym ball · Helped
Gentle supported stretching on the floor and using a gym ball.
In context ↗ - video games, crochet, drawing · Helped
Getting into video games helped me cognitively, crochet, drawing
In context ↗ - daily naps and a regular bed time routine · Helped
daily 1.5 hour naps and more if needed ... Getting a good regular bed time wake up routine
In context ↗ - cold water ‘swimming’ · Helped
Now I go cold water ‘swimming’ (‘or just walking and standing and floating) really helps my breathing and joint pain.
In context ↗
Approaches: Alternative therapies · Diet · Pacing · Radical rest · Supplements
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 |
|---|---|---|---|
| early 2021 | Long Covid began after CovidI had this exact thing for the first year and a half of having long Covid.In context ↗ | Moderate | |
| 2021-2022 | First year and a half: burning muscle and joint pain, wheelchair for outings, unable to workit has felt like my body was on fire and has slowly cooled downIn context ↗ | Severe | |
| 2023-08-25 | Pacing, aggressive rest and wheelchair-assisted outings; PEM much better, out of the house more, still not workingMy PEM has gotten drastically better. I managed to go for a 40 walk last weekIn context ↗ | Mild | Pacing and the energy envelope |
| late 2023 | Pregnancy; most long Covid symptoms went awayFelt great during pregnancy, most of my LC symptoms went away while pregnant.In context ↗ | Near normal | |
| mid 2024, 3 days post partum | Symptoms all returned three days after childbirthUnfortunately it all came back about 3 days post partum.In context ↗ | Moderate | |
| 2026-04-02 | Gradual improvement; PEM nearly gone but still fatiguedmy PEM is nearly gone, I have an Heds diagnosis (since LC) so most of my joint related symptoms I think are due to that but I still suffer from fatigueIn context ↗ | Mild | |
| 2026-06-30 | PEM gone, can push a little; joint pain, laxity, fatigue and poor temperature regulation remainmy PEM has basically gone so I feel very lucky, I’m able to push myself a little and gain strengthIn context ↗ | Mild |
Adverse events
- “I was taking NSAIDS for long Covid joint pain, and hadn’t been prescribed anything to protect my stomach, eventually resulting in gastritis (specifically, vomiting blood)” In context ↗ Gut side effects
- “eventually resulting in gastritis (specifically, vomiting blood), ending up in hospital” In context ↗ ER visit
Symptoms mentioned
Brain fogBreathlessnessFlu-like symptomsPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseTemperature regulationVision problems
Their words about their symptoms
- Pain & fibromyalgia
I suffer a lot from joint pain and laxity
In context ↗ - Post-exertional malaise
my PEM has basically gone
In context ↗ - POTS & dysautonomia
I have pots, PEM, now PCOS, and a new diagnosis of hEDS.
In context ↗ - Brain fog
Getting into video games helped me cognitively
In context ↗ - Breathlessness
really helps my breathing and joint pain
In context ↗ - Vision problems
literally the only thing that can be ‘cured’/‘helped’ is the vision thing just with new glasses!
In context ↗ - Temperature regulation
I’ve been really struggling in the heat, achy burning joints, fatigue, poor temp regulation.
In context ↗ - Flu-like symptoms
mine would be pain in my hip, or a sore throat, or just creeping fatgue
In context ↗
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