Long COVID with PEM, POTS and pain, somewhat better with pacing and diet
- Condition
- Long COVID
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 2 years
- Last post
- Dec 2025
In their words
- At worst: Moderate
I have to be super stringent on pacing or I get PEM
In context ↗ - Now: Somewhat better
I learnt how to manage it and even have seen some improvements.
In context ↗ - Began after: COVID
before I got Covid my life was finally beginning to flourish ... All of a sudden the structures I built around me collapsed when I got sick
Read from 23 of their posts and comments; links to the 16 this page draws on
Summary
Falcon 22308 fell ill with long COVID in 2023 and was still posting at the end of 2025, describing two years of ups and downs with PEM, POTS, MCAS, insomnia and pain. A severe crash in mid-2025 led them to take time out of computer work; pacing with a Visible armband, a kitchari and congee diet, yin yoga, massage and acupuncture brought gradual improvement, enough to cook a meal and walk 20 minutes. They said they still had a long way to go.
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What they tried
What they credit
Also tried
Their words about each treatment
- vyvanse · Much worse
vyvanse has fucked me up so bad and I am convinced that’s why I have severe LC now.
In context ↗ - saunas · Helped
I’ve had a lot of good results from saunas, red light, acupuncture
In context ↗ - acupuncture · Helped a lot
I did acupuncture and cupping today and the pain literally disappeared. I can move my body freely.
In context ↗ - sunbeds / sunlight · Helped
sunbeds give me energy, pain relief as well as a glow
In context ↗ - botox · Not said
I’m heading to get botox in a minute actually
In context ↗ - TCM · Helped
I’ve had some really good results from TCM too. ... It really has been such a relief esp with all the pain.
In context ↗ - pacing · Helped
I have to be super stringent on pacing or I get PEM but equally as hard as the crash I have experienced a fairly quick recovery.
In context ↗ - Visible armband · Helped a lot
Visible armband changed my life !
In context ↗ - kitchari / daal / congee diet · Helped
I started a diet a week ago where all I ate was kitchari and it has helped loads.
In context ↗ - Yin Yoga · Helped
I’ve found gentle exercise good - like yin floor based yoga. My heart feels so happy and free afterwards and the inflammation goes down.
In context ↗ - self-massage · Helped
doing gentle movements like Yin Yoga and self-massage and I’m feeling better gradually
In context ↗ - compression socks · Helped
Compression socks are super helpful!
In context ↗ - Fexofenadine · No change
I barely felt it. No side effects but a little ineffective I thought as an antihistamine?
In context ↗ - Cat claw · Helped
Cat claw! A traditional Chinese medicine herb
In context ↗ - whoop watch · Helped
I think what helped me was getting a whoop watch which tracks my REM and deep restorative sleep.
In context ↗ - mask and ear plugs · Helped
Basic things like mask and ear plugs help too.
In context ↗ - aspirin · Helped
Aspirin also helps as it is a blood thinner and so it helps with blood flow.
In context ↗ - thai lymphatic draining massage · Helped a lot
Yesterday I tried a thai lymphatic draining massage and wow it blew my mind. So much swelling has gone.
In context ↗ - cupping · Helped a lot
I did acupuncture and cupping today and the pain literally disappeared. I can move my body freely. Like a miracle.
In context ↗ - mobility exercises · Helped
started doing some mobility exercises, going for massages and acupuncture when I’m in great pain
In context ↗ - massages · Helped
going for massages and acupuncture when I’m in great pain
In context ↗
Approaches: Alternative therapies · Diet · Mind-body practices · Pacing · 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. The chart starts 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 |
|---|---|---|---|
| 2023 | fell ill with long COVIDsince I was struck down in 2023In context ↗ | Not stated | |
| 2023-2024 | kept pushing through and repeatedly fell back downI kept pushing through only to fall back down againIn context ↗ | Not stated | |
| 2025-06 | severe crash, had to stop computer work and deleted InstagramI just got done in quite severely in a way I couldn’t imagineIn context ↗ | Moderate | |
| 2025-06 | gradual recovery after crash with strict pacing, Visible armband, daal diet, yin yoga and self-massageI’ve also been eating only daal, doing gentle movements like Yin Yoga and self-massage and I’m feeling better gradually ... able to cook an elaborate meal or walk for 20minsIn context ↗ | Mild | Pacing and the energy envelope |
| 2025-08-12 | some improvements from diet change, mobility exercises, massages and acupuncture, but still a long way to goI have been sick for 2 years now and it feels like I still have a long way to goIn context ↗ | Mild |
Adverse events
- Manual lymphatic drainage“Beware today I feel rough emotionally and physically, but that’s normal - we’re being detoxed.” In context ↗ Herx / die-off reaction
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I have to be super stringent on pacing or I get PEM
In context ↗ - Brain fog
I’ve found that it has cleared my brain frog quite significantly.
In context ↗ - POTS & dysautonomia
found remedies for POTS, MCAS
In context ↗ - Sleep problems
I have had lifelong insomnia which got loads worse due to LC
In context ↗ - Pain & fibromyalgia
Have been in pain for weeks. I did acupuncture and cupping today and the pain literally disappeared.
In context ↗ - Gut problems
I have had constipation since I was struck down in 2023
In context ↗ - Heart symptoms & palpitations
my heart is consistently at 140-160bpm
In context ↗ - Anxiety & low mood
PMS has also got me spiralling to suicidal depths atm
In context ↗
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