Severe ME/CFS, could do almost nothing, now somewhat better after wheelchair use and sun
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- Oct 2023
In their words
- Condition: ME/CFS
I started the mini pill before ME
In context ↗ - At worst: Severe
I’m moderate now and when I was severe I could do almost nothing.
In context ↗ - Now: Somewhat better
I’m moderate now and when I was severe I could do almost nothing.
In context ↗
Read from 7 of their posts and comments; links to the 7 this page draws on
Summary
A Reddit user in r/cfs, ill only a short time, described being severe, when they could do almost nothing, and said they were moderate by July 2023. Realising they could use a wheelchair that May was life changing, getting sun helped, and they planned an electric one to get out more. They still had muscle weakness after exertion and sometimes chose activities they knew would cause a crash, taking under a week of rest to recover.
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What they tried
What they credit
Also tried
Their words about each treatment
- mini pill (Degesterel) · Helped a lot
I’m on the mini pill and it’s changed my life!
In context ↗ - wheelchair · Helped a lot
I haven’t been ill for long but realising I can use a wheelchair has been life changing.
In context ↗ - rest · Helped
after enough rest it improved for me
In context ↗ - Combined birth control (pill, patch or ring) · Not said
My emotions were haywire and I was so emotional, like period emotional mixed with anger but over a couple of months.
In context ↗
Approaches: Sex hormones
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. 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 |
|---|---|---|
| — | ME/CFS began, cause not identifiedI haven’t been ill for longIn context ↗ | Not stated |
| — | severe ME, could do almost nothingI’m moderate now and when I was severe I could do almost nothing.In context ↗ | Severe |
| May 2023 | started using a wheelchair and could get outside in the sunrealising I can use a wheelchair has been life changingIn context ↗ | Moderate |
| 2023-07-29 | improved from severe to moderate | Moderate |
| 2023-10-22 | still moderate; progesterone-only pill had changed her lifeI’m on the mini pill and it’s changed my life!In context ↗ | Moderate |
Adverse events
- Combined birth control (pill, patch or ring)“My emotions were haywire and I was so emotional, like period emotional mixed with anger but over a couple of months.” In context ↗ Mood or psychiatric effects
- Combined birth control (pill, patch or ring)“one of the hardest periods I’ve had pain and emotion wise and if I miss a day I have a full breakdown emotionally” In context ↗ Withdrawal problems
- Progestin-only birth control (mini pill, implant or shot)“I had about 3 months of intense mood swings where I was very irritable and emotional.” In context ↗ Mood or psychiatric effects
- Progestin-only birth control (mini pill, implant or shot)“My warning is that coming off it was even more hell than going on it” In context ↗ Withdrawal problems
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
Sometimes I do things that I know will make me crash
In context ↗ - Muscle weakness
I still get muscle weakness after over exertion sometimes
In context ↗
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