ME/CFS with PEM crashes and POTS, now much better with pacing and a wheelchair
- Condition
- ME/CFS
- At worst
- Not stated
- Ill before improving or writing
- 4 years
- Last post
- May 2025
In their words
- Condition: ME/CFS
I have CFS and POTS brought on by covid infections (4 years in)
In context ↗ - Now: Much better
It’s made a *huge* difference in my energy envelope. I can handle a couple of days of light activity before getting crashy
In context ↗ - Began after: COVID
I have CFS and POTS brought on by covid infections (4 years in)
In context ↗
Read from 30 of their posts and comments; links to the 17 this page draws on
Summary
Stream 71218 developed ME/CFS and POTS after covid infections and spent four years cycling between severe, moderate and near-mild, with PEM crashes that sometimes left them bedbound for a week or more. Trying to exercise their way out of POTS took them from mild to severe. Pacing with the Visible armband and later a wheelchair reduced their crashes, and by spring 2025 they were mild to upper-moderate, able to attend concerts again. PEM and POTS remained.
Ask Miruvor AI
What they tried
What they credit
Also tried
Their words about each treatment
- exercise my way out · Much worse
Figured out the POTS first and tried to exercise my way out, progressivley taking my ME from mild to severe.
In context ↗ - ivig infusions · Helped
right about the 5 weeks mark I've started to have days where I feel significantly better than I have since my last infection over a year ago
In context ↗ - pacing · Helped
I'm functional-ish again after a week of being miserable and bedbound thanks to pacing.
In context ↗ - visible armband · Helped
having the visual and the data and figuring out how to ACTUALLY pace jas really helped
In context ↗ - radical rest · Helped
But RADICAL rest as much as possible, releasing all hopes and responsibilities other than staying alive and resting got me back to low moderate
In context ↗ - Scopalomine patches · Helped
Scopalomine patches help but only so much.
In context ↗ - wheelchair · Helped a lot
this time I do: my wheelchair ... It’s made a *huge* difference in my energy envelope.
In context ↗ - Adderall · Helped
The adderall itself does not cause PEM, so if I pace I can take it and I can actually make progress on seated tasks
In context ↗ - meditation and mindfulness, yoga · Helped
meditation and mindfulness, yoga, the whole shebang ... I've even seen minor improvements from these
In context ↗ - very little carbs · Helped
As long as I eat very little carbs, I don't nececarily get more energy, but I have a wondow of being less symptomatic in all my conditions
In context ↗ - salt · Not said
Rest, salt etc.
In context ↗ - compression garments · No change
using compression garments, bags of ice, fans, etc. ... This would still usually put me out with PEM.
In context ↗ - Dextromethorphan · Helped
Dextromethorphan before, during and after exertion
In context ↗
Approaches: Pacing · Radical rest
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. 1 step has no time and sits in story order between the steps around it. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 2021 | Long COVID after covid infections; ME initially mildI have CFS and POTS brought on by covid infections (4 years in)In context ↗ | Mild | |
| — | exercising to fix POTS worsened ME from mild to severeFigured out the POTS first and tried to exercise my way out, progressivley taking my ME from mild to severe.In context ↗ | Severe | Everyday exercise and activity |
| 2024-09 | started having significantly better days on IVIG studyright about the 5 weeks mark I've started to have days where I feel significantly better than I have since my last infection over a year agoIn context ↗ | Moderate | IVIG / subcutaneous Ig |
| 2024-10 | crashed after cleaning the house on returning from a tripThen when we got home I cleaned the house and crashed myself terriblyIn context ↗ | Severe | |
| 2024-11 | bedbound over a week after a concert, feared they were permanently severeeven with a power wheelchair I fully bed bound crashed myself so bad for over a week that I thought for sure I was permanently severe nowIn context ↗ | Severe | |
| 2024-12-10 | functional again after a week bedbound with pacingI'm functional-ish again after a week of being miserable and bedbound thanks to pacing.In context ↗ | Moderate | Pacing and the energy envelope |
| 2025-03 | got a wheelchairI recently got a wheelchair and it has changed SO MUCH for the better.In context ↗ | Moderate | |
| 2025-04-24 | remission period thanks to wheelchair and warmer weatherMy symptoms would *dramatically* decrease—going from moderate/severe to mild/upper moderate.In context ↗ | Mild | |
| 2025-05-23 | attending live music events with wheelchair, pre- and post-rest, dextromethorphanThis has massivley expanded my ability to attend events and not experience PEM, or reduce it dramatically.In context ↗ | Mild |
Adverse events
- Everyday exercise and activity“Figured out the POTS first and tried to exercise my way out, progressivley taking my ME from mild to severe.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
after my last few PEM crashes where it feels like my baseline is lowering
In context ↗ - POTS & dysautonomia
I have POTS as well, I believe hypovolemic.
In context ↗ - Temperature regulation
The 75° limit! Its SO REAL! I was saying this all summer while the heat was kicking my ass.
In context ↗ - Pain & fibromyalgia
For me I have a lot of aching and pain in general
In context ↗ - Headaches & migraine
especially POTS symptoms and neurological/migrains
In context ↗ - Heart symptoms & palpitations
even sudden sharp chest pain doesn't cause me to have a significant stress response
In context ↗ - Muscle weakness
my muscles did the PEM thing (internal vibrations, all movement feeling like lifting weights, pain soreness tightness)
In context ↗ - Sleep problems
I have been overtaken with hypersomnia (sleeping 15+ hours a day for 2-3 days so far)
In context ↗ - Anxiety & low mood
Ive only just recently come out the other side to being sure life is still worth it, and I am still valuable.
In context ↗ - Light & noise sensitivity
Have tools to reduce stimulation! I keep several sets of earplugs with different blocking levels
In context ↗
Ask Miruvor AI
Similar stories
-
Bedbound at worst with ME/CFS, now much better after giving birth
Creek 59152, a woman in France, had ME/CFS starting six months before a first bedbound crisis at 30, followed by two more crises. In May 2025 she could walk 500 m, but a PEM in September 2025, at five months pregnant, cut that to 300 m a day; she used a…
-
Not enough detail to draw a path
Bedbound at worst with ME/CFS, much better with pacing and low-dose naltrexone
A woman in Germany, she first had ME/CFS at 16 and recovered enough to study and work; it returned at 29 after another virus. A swimming session left her bedridden, and a later laparoscopy made her much worse. Strict pacing, ivabradine for POTS (though…
-
Long COVID with POTS, PEM and joint pain, much better now; rest and pacing helped
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…
-
Housebound and almost bedbound with ME/CFS, now mild-moderate after pacing and propranolol
Hill 34386 fell ill at 12 with a virus, likely COVID, in early 2020 and was mild at first. Pushing through took them to severe, housebound and almost bedbound, until pacing, mobility aids and mental-health support helped. Propranolol for dysautonomia brought…