ME/CFS with breathlessness and PEM, much better after Mestinon and another medication
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 20 months
- Last post
- Apr 2026
In their words
- Condition: ME/CFS
Recently diagnosed with Myasthenia Gravis, but my main symptoms are CFS.
In context ↗ - At worst: Moderate
I went from moderate to mild but still haven’t been able to walk more than 25 feet.
In context ↗ - Now: Much better
I am doing significantly better after my 3rd dose of Ultomiris. I still use a mobility scooter and am fatigued most days.
In context ↗ - Began after: stress or burnout
Work stress was definitely the main thing happening.
Read from 16 of their posts and comments; links to the 8 this page draws on
Summary
ME/CFS began suddenly on 1 March 2022 after work stress, with breathlessness, PEM, chills and unrefreshing sleep; they could not walk more than 25 feet but kept working from home. Mestinon helped, and a medication started in October 2023 reduced major crashes and let them be out 4-5 hours a day, though they stayed mild-moderate. Prednisone, Mestinon and Ultomiris for myasthenia gravis helped, and they were significantly better by January 2025, though still fatigued most days and using a scooter.
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What they tried
What they credit
Their words about each treatment
- mestinon · Helped
It helps me! ... Less crashes. Helps me breathe better.
In context ↗ - Rapamycin · Helped a lot
I started mid-October and noticed a significant improvement 2.5 weeks later. It has kept me from having severe crashes.
In context ↗ - Lactaid · Not said
I take one Lactaid for every Mestinon dose and always eat it with food.
In context ↗ - Imodium · Not said
I carry Imodium with me all the time.
In context ↗ - D Ribose · Not said
I also recently added D Ribose 5 mg powdered three times a day.
In context ↗ - prednisone · Helped
For the last year, I am on prednisone, Mestinon and Ultomiris — and they do help.
In context ↗ - VYVGART · No change
I tried VYVGART last year and it didn’t work for me
In context ↗ - Ultomiris · Helped a lot
I am doing significantly better after my 3rd dose of Ultomiris. ... But it is helping a lot.
In context ↗ - Garmin · No change
I did try Garmin two years ago and was so discouraged every morning waking up with such a low Body Battery.
In context ↗ - Visible · Helped
I do recommend Visible! ... It helps me prioritize how to spend my Pace Points.
In context ↗
Approaches: POTS medication · Biologics & antibodies · Other drugs and medicines · Pacing
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, with time counted from when the illness began. Hover or tap a point. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 3/1/22 | Sudden onset of ME/CFS after work stress; lowest pointI had sudden onset on 3/1/22 ... I had very little physical energy- it was very bizarre experiencing that for the first time.In context ↗ | Moderate | |
| 2023-05-10 | Went from moderate to mild but still limited to 25 feet of walkingI went from moderate to mild but still haven’t been able to walk more than 25 feet. I can still work full time telecommuting.In context ↗ | Mild | Mestinon / pyridostigmine |
| 2023-12-29 | Rapamycin stopped major crashes; out of the house 4-5 hours a day with a scooterI have not crashed even though I have had signs of overdoing it ... I can be out for 4-5 hours a day but use a mobility scooter while out.In context ↗ | Mild | Rapamycin / sirolimus |
| 2025-01-28 | Significantly better after Ultomiris for myasthenia gravis, still scooter-dependent and fatiguedI am doing significantly better after my 3rd dose of Ultomiris. I still use a mobility scooter and am fatigued most days.In context ↗ | Mild |
Adverse events
- Mestinon / pyridostigmine“I do have tummy issues bc of it. I take one Lactaid for every Mestinon dose and always eat it with food.” In context ↗ Gut side effects
- Symptom-tracking apps and wearables (Visible)“I did try Garmin two years ago and was so discouraged every morning waking up with such a low Body Battery.” In context ↗ Mood or psychiatric effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I do get PEM and chills.
In context ↗ - Breathlessness
My regular symptoms are fatigue and shortness of breath.
In context ↗ - Sleep problems
PEM, unrefreshing sleep, chills, & fatigue
In context ↗ - Temperature regulation
My crash symptoms (chills, drowsiness, overstimulation)
In context ↗ - Light & noise sensitivity
Noisy environments and socializing really wear me out— like I feel ill afterwards if I overdo it.
In context ↗
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