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ME/CFS Severe → no benefit

Bedbound some days with ME/CFS, no improvement on Mounjaro

Condition
ME/CFS
At worst
Severe (mostly bedbound)
Ill for
Not stated
Last post
Apr 2025
In their words
  • Condition: ME/CFSI have severe ME/CFS and fibromyalgia. In context ↗
  • At worst: SevereI have severe ME/CFS and fibromyalgia. In context ↗
  • Now: No benefitbut it's week 4 and I'm still mostly in bed In context ↗
Read from 1 of their posts and comments; links to the one this page draws on

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Summary

Gull 57093 had severe ME/CFS and fibromyalgia, bedbound on some days despite Adderall for energy. Four weeks before writing they started Mounjaro 2.5 mg and said it brought them to their knees; by week four they were still mostly in bed. Their chronic constipation flared and they had yet to hear when it might improve.

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What they tried

Their words about each treatment
  • Adderall · HelpedI'm on Adderall for energy. Some days it works, other days, I'm bedbound. In context ↗
  • Mounjaro · Much worseI started Mounjaro 2.5 4 weeks ago. It's brought me to my knees. The 2nd and 3rd weeks were the worst, but it's week 4 and I'm still mostly in bed. In context ↗
  • lubiprostone · Not saidmy chronic constipation has flared up. I'm on lubiprostone 16mg daily, but I need to have that increased. In context ↗
  • vitamins · Not saidI take vitamins by the hands full In context ↗

Their path

Very severeSevereModerateMildNear normalRecovered

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
WhenWhat happenedWhere they wereAfter
—severe ME/CFS and fibromyalgia, bedbound on some daysI have severe ME/CFS and fibromyalgia. In context ↗Severe
4 weeks before 2025-04-04started Mounjaro 2.5 mg and was brought to their kneesI started Mounjaro 2.5 4 weeks ago. It's brought me to my knees. In context ↗SevereTirzepatide (Mounjaro, Zepbound)
2025-04-04week 4 of Mounjaro, still mostly in bedit's week 4 and I'm still mostly in bed In context ↗Severe

Adverse events

Symptoms mentioned

Their words about their symptoms

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