ME/CFS
Severe → no benefit
Moderate-to-severe ME/CFS, still ill despite a wheelchair for energy and pain
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- Not stated
- Last post
- Apr 2021
In their words
- Condition: ME/CFS
I have moderate to severe CFS. Cycles between semi-functional to bed bound.
In context ↗ - At worst: Severe
I have moderate to severe CFS. Cycles between semi-functional to bed bound.
In context ↗ - Now: No benefit
I suspect I will be back to normal sick me.
In context ↗
Read from 7 of their posts and comments; links to the 4 this page draws on
Summary
A Reddit user with moderate-to-severe CFS, cycling between semi-functional and bed-bound, got a used TiLite manual wheelchair that their husband bought, which they paid for out of pocket, and said it saved them energy and pain; they used it on roughly 40-60% of days. Two COVID vaccine doses brought a day of arm immobility and sleep after the first, and vomiting, one good day, then headache and stiffness after the second. They expected to return to their usual ill baseline.
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What they tried
Also tried
tilite chair· Helpedmelatonin· Helpedfocusing on breathing very slowly· Helpedprescription medications for insomnia· Worsewalking on short trips· Not saidCovid vaccine· Not said
Their words about each treatment
- tilite chair · Helped
I have a manual (tilite) chair! ... it still saves me lots of pain and energy and days when I need it.
In context ↗ - melatonin · Helped
I also take melatonin but it doesnt work every night and eventually your body will get used to it.
In context ↗ - prescription medications for insomnia · Worse
I also have prescription medications for insomnia but I don't like how they make me feel
In context ↗ - focusing on breathing very slowly · Helped
So I switch between holding my breathe and just focusing on breathing very slowly. It does help some to jumpstart that falling asleep process.
In context ↗ - walking on short trips · Not said
I still push myself to walk on short trips, days I feel well enough to, days I feel walking would help my muscles stretch.
In context ↗ - Covid vaccine · Not said
First shot. Was fine the first day. Second day literally could not move my arm. Slept the entire day.
In context ↗
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, in the order they describe; they don’t give enough times to place each step. Hover or tap a point. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| 2020-07-28 | got a used TiLite manual wheelchair, helpful even indoorsI learned it was actually helpful in the house as well.In context ↗ | Moderate |
| 2020-08-07 | isolated, bed and house bound with broken sleepBeing isolated and bed/house bound has been some of the worst experiences of my lifeIn context ↗ | Severe |
| 2021-04-19 | COVID vaccine first dose: arm immobility, slept a daySecond day literally could not move my arm. Slept the entire day.In context ↗ | Moderate |
| 2021-04-19 | COVID vaccine second dose: vomiting, then one good day, then headache and stiffnessThrew up while walking my dog ... Third day headache and more nausea, very stiff muscles.In context ↗ | Moderate |
| 2021-04-19 | settling back to usual ill baselineI suspect I will be back to normal sick me.In context ↗ | Moderate |
Adverse events
- “I also have prescription medications for insomnia but I don't like how they make me feel” In context ↗ Side effects
- COVID vaccination as treatment“First shot. Was fine the first day. Second day literally could not move my arm. Slept the entire day.” In context ↗ Side effects
- COVID vaccination as treatment“Second shot. Threw up while walking my dog, a little nauseous but that was it for the first day.” In context ↗ Gut side effects
- COVID vaccination as treatment“Third day headache and more nausea, very stiff muscles.” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodGut problemsHeadaches & migrainePOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
I would definitely crash and be in pain
In context ↗ - Sleep problems
it takes me hours to fall asleep and then I sleep very little or way too long
In context ↗ - POTS & dysautonomia
I have syncope which worsens with stress
In context ↗ - Pain & fibromyalgia
the actual act of standing up is incredibly painful and wasts a lot of energy
In context ↗ - Headaches & migraine
Third day headache and more nausea, very stiff muscles
In context ↗ - Gut problems
Threw up while walking my dog, a little nauseous
In context ↗ - Anxiety & low mood
worsen the exhaustion, depression, etc.
In context ↗