ME/CFS flares with full-body weakness; college month on Mayo exercise, then relapse
- Condition
- ME/CFS
- At worst
- Mild (working or studying, with limits)
- Ill before improving or writing
- 1 year
- Last post
- May 2025
In their words
- Condition: ME/CFS
I was just recently diagnosed with CFS by my doctor at Mayo
In context ↗ - At worst: Mild
before I went to the Mayo Clinic I would flare every other day
In context ↗ - Now: Relapsed
I was able to be in college for a month straight without missing a single day. I felt fine. Now I’m flaring every other week for a week straight.
In context ↗
Read from 13 of their posts and comments; links to the 10 this page draws on
Summary
A 21-year-old with POTS was diagnosed with CFS at the Mayo Clinic after about a year of flaring every other day with full-body weakness. A Mayo exercise prescription let her attend college for a month straight, but flaring returned every other week and she planned to drop out again. She kept light stretching, resistance bands and nervous-system sessions while severe anxiety persisted, and stopped Lexapro over side effects.
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What they tried
What they credit
Also tried
Their words about each treatment
- exercise prescription · Helped
The doctors at Mayo formed an exercise prescription specifically made for me and it’s helped a lot.
In context ↗ - counting outings as the day's movement · Not said
If I’m going out for an appointment or am out for 1-2 hours during the day I will count that as my movement for the day and not do any extra just incase.
In context ↗ - breathing and meditative techniques · Not said
I also go to a lady who helps me regulate my nervous system with breathing and meditative techniques every other week.
In context ↗ - therapy · No change
I’ve tried so hard in therapy and yoga and other stuff to calm my anxiety but it’s just way too much to handle
In context ↗ - midodrine · Not said
I’ve tried midodrine and they want me to try Mestinon.
In context ↗ - lexapro · Worse
I tried lexapro which lowered my heart rate the first few days but I had to stop because the side effects were too severe.
In context ↗ - heated blanket · Helped
heated blanket is a game changer idk how I ever slept without it
In context ↗
Approaches: Physiotherapy and rehab
Their path
What they say at each step doesn’t fit the worst point or outcome above on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened | After |
|---|---|---|
| 2024 | onset of ME/CFS after POTS; flaring every other day with extreme full-body weaknessbefore I went to the Mayo Clinic I would flare every other day. My flares are extreme weakness all through my bodyIn context ↗ | |
| early 2025 | after a Mayo exercise prescription she attended college for a month straightafter I started exercising after Mayo, I was able to be in college for a month straight without missing a single day. I felt fine.In context ↗ | Graded rehab and self-made programmes |
| March 2025 | flaring every other week for a week straight; may have to drop out of collegeNow I’m flaring every other week for a week straight.In context ↗ | |
| April 2025 | crashed after 5 minutes on the recumbent bike, followed by a panic attackI tried to use my recumbent bike a little today not even 5 minutes and it crashed me really badlyIn context ↗ | |
| May 2025 | able to get to in-person therapy; light stretching and resistance-band routine, constant anxietyI made it to therapy in person and had an amazing session and then got Starbucks afterwards :)In context ↗ |
Adverse events
- Graded rehab and self-made programmes“I have been doing an exercise routine these past 2 days and I know that’s what’s messed me up bad this time.” In context ↗ Made symptoms worse
- Escitalopram (Lexapro)“I tried lexapro which lowered my heart rate the first few days but I had to stop because the side effects were too severe.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Gut problems
my GI and menstrual cramps have become more severe again
In context ↗ - Temperature regulation
I get this but from POTS and let me tell you… heated blanket is a game changer
In context ↗
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