Long COVID walking limited to 50 m, now somewhat better with nicotine patches and NAD
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 2 years
- Last post
- Dec 2023
In their words
- Condition: Long COVID
I have ME/CFS-like long Covid.
In context ↗ - At worst: Severe
I have been severely ill with bad PEM. At my worst 20 minutes of work once made me relapse for 3 weeks of suffering.
In context ↗ - Now: Somewhat better
over the four months since I’ve been on it I’ve been able to get up to walking around 250m maximum ... It’s also improved me overall I would say about 10-20%
In context ↗ - Began after: COVID
I have ME/CFS from Covid with very sensitive physical PEM
Read from 7 of their posts and comments; links to the 6 this page draws on
Summary
Fell ill with ME/CFS-like long COVID after getting a job in Japan; at his worst he could walk about 50 m and 20 minutes of work caused a three-week relapse. Nicotine patches seemed to suppress his PEM somewhat and improved him 10-20%, taking walking to about 250 m and letting him shop and dance. He still worked only 3-4 hours most days from home; sublingual NAD seemed to help too.
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What they tried
Also tried
Their words about each treatment
- rehabilitate myself · Helped
Horrific PEM but I’ve been able to slowly rehabilitate myself to a level of much improved function
In context ↗ - nicotine · Helped a lot
Nicotine seemed to suppressed PEM in me to a certain extent ... This has made a huge impact in my life, allowing me to go shopping in malls
In context ↗ - sublingual NAD · Helped
I’ve recently started sublingual NAD which I think is helping me too
In context ↗ - psilocybin · Not said
I took psilocybin which did still work completely like normal
In context ↗ - get high · Worse
I get high about once a week. It makes me more exhausted but it’s a psychological escape
In context ↗
Approaches: Physiotherapy and rehab · 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 8 months 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
| When | What happened | Where they were | After |
|---|---|---|---|
| onset | fell ill just after starting a job as CSO in JapanI fell sick just after getting my dream job and one of the most privileged jobs in the world as CSO of a stem cell engineering company in Japan.In context ↗ | Not stated | |
| early 2022 | lowest point: only 50 m of shuffling; 20 minutes of work or 500 steps caused a three-week relapseAt my worst I could only walk about 50 meters maximum and that was shuffling at the slowest possible pace.In context ↗ | Severe | |
| 2022-08-18 | kept the job remotely and could work 3-4 hours most daysFrom that most severe point I now work 3-4 hours most days.In context ↗ | Severe | |
| 2023-10-26 | nicotine suppressed PEM; walking up to 250 m, shopping in malls, went dancing twice, about 10-20% better overallNicotine seemed to suppressed PEM in me to a certain extent, and over the four months since I’ve been on it I’ve been able to get up to walking around 250m maximum.In context ↗ | Moderate | Nicotine patches |
| 2023-12-03 | still unstable with very sensitive PEM; recently started sublingual NAD which he thought was helpingAlso I’ve recently started sublingual NAD which I think is helping me too.In context ↗ | Moderate |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
Very sensitive PEM from physical activity.
In context ↗ - Neuropathy & tingling
Would feel vulnerable, some neural symptoms.
In context ↗
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