Bedbound with long COVID and nerve pain, now mostly better with more activity
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 2.5 years
- Last post
- May 2024
In their words
- Condition: Long COVID
COVID March 2020 long COVID July 2020
In context ↗ - At worst: Severe
Doing much better than two years ago when I was basically bedbound.
In context ↗ - Now: Much better
I’m an OG long hauler who got sick in March 2020 but am mostly better now.
In context ↗ - Began after: COVID
I believe I had covid in March but never was tested due to restrictions in my area.
Read from 10 of their posts and comments; links to the 8 this page draws on
Summary
Caught COVID in March 2020 and began long-hauling that July after a physically active hiking weekend, and was basically bedbound around that time. Neuropathy in arms and legs, muscle pain and cold hands were the main problems; Lyrica made the nerve pain manageable. By September 2022 they worked full time, walked 7,000 steps a day and paced to keep PEM to 15 minutes, crediting increased physical activity, and by May 2024 they were mostly better.
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What they tried
What they credit
Also tried
Their words about each treatment
- massages and rolling daily with a yoga ball · Helped
I have been getting massages and also rolling daily with a yoga ball, and I’ve seen a big improvement! I’m maybe at about 95% now
In context ↗ - Lyrica · Helped
My doctor put me on Lyrica which does help a lot, it is manageable now.
In context ↗ - pace myself · Not said
Can walk 7K steps per day but just have to pace myself.
In context ↗ - increased physical activity · Helped
Seem to be improving a lot this summer due to increased physical activity.
In context ↗
Approaches: Physiotherapy and rehab
Their path
What they say at each step doesn’t fit the worst point or outcome above on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened | After |
|---|---|---|
| March 2020 | caught COVID, then tingling and buzzing in limbsI believe I had covid in March but never was tested due to restrictions in my area. I was mostly symptom-free afterwards, but had a strange tingling and buzzing in my limbs.In context ↗ | |
| end of July 2020 | tingling turned into nerve pain after an active hiking weekendAt the end of July, I had a very physically active weekend and my tingling turned into nerve pain - legs and feet, arms and hands.In context ↗ | |
| around 2020 (two years before September 2022) | basically bedboundDoing much better than two years ago when I was basically bedbound.In context ↗ | |
| 2022-07-15 | about 75% back to normalAbout 75% back to normal now.In context ↗ | |
| 2022-09-20 | working full time, walking 7K steps, PEM down to 15 minutesWorking full time, mostly from home but going into office 2x/week for 5 hours each time. Can walk 7K steps per day but just have to pace myself. PEM only lasts 15 mins or so, then can resume activities.In context ↗ | Graded rehab and self-made programmes |
| 2024-05-18 | mostly better, worried about COVID exposureI’m an OG long hauler who got sick in March 2020 but am mostly better now.In context ↗ |
Symptoms mentioned
Their words about their symptoms
- Neuropathy & tingling
my tingling turned into nerve pain - legs and feet, arms and hands
In context ↗ - Pain & fibromyalgia
my doctor thought it could actually be muscle pain
In context ↗ - Post-exertional malaise
PEM only lasts 15 mins or so, then can resume activities.
In context ↗ - Temperature regulation
Yes! Really cold feet and hands. Seems to have improved over time.
In context ↗ - Anxiety & low mood
Yes! Anxiety increasing, physical symptoms decreasing but only slightly.
In context ↗
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