Avoiding going out with ME/CFS, now somewhat better; nerve pain medication helped
- Condition
- ME/CFS
- At worst
- Not stated
- Ill before improving or writing
- Not stated
- Last post
- Oct 2026
In their words
- Now: Somewhat better
as im getting better through therapy and have sparks of wanting to live
In context ↗
Read from 8 of their posts and comments; links to the 6 this page draws on
Summary
A Reddit user with POTS, MCAS, EDS, IST, Sjögren's and mild sleep apnoea whose neurologist suspected ME/CFS described a baseline that worsened every year despite exercise or reconditioning, while family suggested drinking water and taking walks. By 2026 they avoided going out, used a shower chair, weighed getting a wheelchair and found eating tiring. A high-dose medication helped nerve pain; trauma therapy continued.
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What they tried
What they credit
Their words about each treatment
- exercise or reconditioning · Worse
no matter what exercise or reconditioning I do my body feels like it’s failing
In context ↗ - shower chair · Helped
I do have a shower chair don’t think I could take one without it and not be exhausted lol
In context ↗ - CPAP · Not said
I have never been able to use a CPAP because my nose septum is too deviated.
In context ↗ - pregabalin · Helped
I’m taking a high dose and I’m fine. It helps with nerve pain and makes you sleepy potentially.
In context ↗ - trauma therapist · Helped
as im getting better through therapy
In context ↗
Approaches: Trauma & somatic work
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 |
|---|---|---|
| 2026-03-17 | baseline worsening each year, avoiding going out, weighing a wheelchair, eating tiringwhen I crash it’s been getting bad recently to the point where it feels like eating is tireing.In context ↗ | Moderate |
| 2026-10-19 | getting better in trauma therapy but still cannot live the life they wantas im getting better through therapy and have sparks of wanting to live my like i cantIn context ↗ | Moderate |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
when I crash it’s been getting bad recently to the point where it feels like eating is tireing.
In context ↗ - Mast cell (MCAS) & allergies
For context I am already diagnosed with MCAS/IST/EDS/POTS/Sjogrens.
In context ↗ - Neuropathy & tingling
It helps with nerve pain and makes you sleepy potentially.
In context ↗ - Temperature regulation
I feel all feverish after a nap
In context ↗
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