Fatigue and breathlessness with ME/CFS, now about 60% better on Mestinon
- Condition
- ME/CFS
- At worst
- Not stated
- Ill before improving or writing
- Not stated
- Last post
- Aug 2024
In their words
- Condition: ME/CFS
I was told Mestinon takes 2 or 3 months for someone in my condition.
In context ↗ - Now: Much better
Currently on Mestinon (8 weeks) and have probably 60% improvement which I am so, so grateful for.
In context ↗
Summary
Grove 55559 described fatigue and shortness of breath, and testing found preload failure on iCPET and small fibre neuropathy on biopsy, after one cardiologist said their problems were in their head. In January 2020 they had taken Mestinon four weeks without improvement; by August 2024, eight weeks into Mestinon, they reported about 60% improvement, for which they were very grateful.
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What they tried
What they credit
Their words about each treatment
- Mestinon · Helped a lot
I have started taking Mestinon - four weeks, not any better,yet. ... Currently on Mestinon (8 weeks) and have probably 60% improvement
Approaches: POTS medication
Their path
They say too little about how ill they were at each step to draw it on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened | After |
|---|---|---|
| — | ME/CFS with fatigue and breathlessness, suspected autonomic dysfunctionMy fatigue and ‘shortness of breath’ may be due to a dysfunction of the autonomic nervous systemIn context ↗ | |
| 2024-08-27 | about 60% improvement eight weeks into MestinonCurrently on Mestinon (8 weeks) and have probably 60% improvement which I am so, so grateful for.In context ↗ | Mestinon / pyridostigmine |
Symptoms mentioned
Their words about their symptoms
- Breathlessness
My fatigue and ‘shortness of breath’
In context ↗ - POTS & dysautonomia
dysfunction of the autonomic nervous system
In context ↗ - Neuropathy & tingling
Biopsy showed small fiber neuropathy.
In context ↗
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