ME/CFS
Severe → no benefit
Often in bed with ME/CFS, dizzy and shaking on bad days; tried going slowly and a heat bag
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- Not stated
- Last post
- Apr 2021
In their words
- Condition: ME/CFS
this always coincides with bad days or crashes
In context ↗ - At worst: Severe
she was worried about me losing muscle strength from spending so much time in bed
In context ↗ - Now: No benefit
i'm not confined to my bed, i just need to sit and lie down as frequently as possible
In context ↗
Summary
Glacier 97186 posted in r/cfs in April 2021 about needing to sit or lie down as often as possible and spending so much time in bed that a doctor worried about losing muscle strength. On bad days and during crashes they became extremely dizzy and a couple of times had brief convulsions with uncontrollable leg shaking; blood tests were normal and blood pressure low-normal. They found that taking things very slowly eased the dizziness, and used a microwaveable heat bag that was pleasant for their neck and shoulders.
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What they tried
Also tried
taking my time (nearly obsessively so)· Helpedmicrowaveable bag things· Helped
Their words about each treatment
- taking my time (nearly obsessively so) · Helped
i find taking my time (nearly obsessively so) alleviates a lot of dizziness-related problems.
In context ↗ - microwaveable bag things · Helped
it doesn't stay hot very long but it's been pleasant for my neck and shoulders
In context ↗
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 |
|---|---|
| 2021-04-03 | extremely dizzy on bad days, with brief convulsions and leg shakingon poorer days where i'm extremely dizzy, there's been a couple times where i've experienced convulsionsIn context ↗ |
| 2021-04-08 | spending so much time in bed that a doctor worried about muscle loss; red tender patches on hipsshe was worried about me losing muscle strength from spending so much time in bedIn context ↗ |
Symptoms mentioned
Their words about their symptoms
- POTS & dysautonomia
on poorer days where i'm extremely dizzy
In context ↗ - Brain fog
maybe feeling a little foggy but overall fine
In context ↗ - Muscle weakness
she was worried about me losing muscle strength from spending so much time in bed
In context ↗