Severe six-month ME/CFS downturn, still limited after prednisone and physiotherapy
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- Not stated
- Last post
- Jul 2023
In their words
- Condition: ME/CFS
‘Envelope’ is about 1min of focus or physical activity - advice?
In context ↗ - At worst: Severe
I timed it. I can do about a minute of stuff before I have to stop, but I’m not sure for how long.
In context ↗ - Now: No benefit
The last 6 months my physical wellness has taken a severe downturn.
In context ↗
Read from 4 of their posts and comments; links to the 4 this page draws on
Summary
A Reddit user with POTS, fibromyalgia and ADHD described a severe six-month downturn from early 2023, able to do about a minute of activity before stopping and needing help with chores. A week of 20 mg prednisone in May cleared their brain fog and pain, but their GP was reluctant to continue it because of long-term steroid risks after the ear inflammation it was prescribed for resolved. By July, aquatic and vestibular physiotherapy had helped pain and vertigo while using up their limited energy.
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What they tried
Also tried
Their words about each treatment
- concerta and adderall · Helped
both concerta and adderall (not taken simultaneously, was taking concerta, switched to adderall) help me significantly because it helps my ADHD
In context ↗ - prednisone · Helped a lot
The only thing that helped was 20mg of prednisone for a week back in May - the brain fog went away completely, and I was pain free for the first time in years
In context ↗ - CPAP · Not said
the apnea I was already on a CPAP for was being effectively treated and not making this worse - everything’s managed there
In context ↗ - aquatic PT and vestibular therapy · Helped
I have aquatic PT for fibro pain ... It has helped both
In context ↗ - pacing · Not said
Sitting can help me make it not worse
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. 3 steps say too little to place on the scale and are only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 2022-07-04 | stimulants helped ADHD and POTS symptoms; symptoms worsened when off themmy symptoms got worse when I was off of it, and helped when I got back onIn context ↗ | Not stated | |
| 2023-01 | severe six-month downturn in physical wellnessThe last 6 months my physical wellness has taken a severe downturn.In context ↗ | Not stated | |
| May 2023 | a week of 20 mg prednisone cleared brain fog and pain, then was stoppedThe only thing that helped was 20mg of prednisone for a week back in May - the brain fog went away completely, and I was pain free for the first time in yearsIn context ↗ | Not stated | Corticosteroid pulses |
| 2023-07-13 | could do about a minute of activity before stopping; brain mud; hygiene at a minimumI can do about a minute of stuff before I have to stopIn context ↗ | Severe | |
| 2023-07-14 | aquatic and vestibular physiotherapy helped pain and vertigo but used up limited energy; numbness spreadingIt has helped both, but I know it’s eating up the little of the spoons I haveIn context ↗ | Severe |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I can do about a minute of stuff before I have to stop
In context ↗ - Brain fog
the brain fog has turned to brain mud
In context ↗ - POTS & dysautonomia
I have ADHD and POTS
In context ↗ - Pain & fibromyalgia
also have fibromyalgia&POTS
In context ↗ - Neuropathy & tingling
about a month ago numbness/loss of sensation started on my left side and has been spreading throughout my body
In context ↗