ME/CFS PEM left them unable to dress, now much better with gabapentin and low-FODMAP diet
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- Not stated
- Last post
- Jan 2021
In their words
- Condition: ME/CFS
I also was diagnosed with chronic fatigue syndrome and my PEM was so bad that I couldn’t dress myself some days
In context ↗ - At worst: Moderate
I had previously wondered if I’d be basically housebound for life
In context ↗ - Now: Much better
After only a month of PT my PEM was pretty much gone. ... I’m walking close to 2 miles a day now in addition to PT.
In context ↗ - Began after: another virus
I felt like I had a “bobble head” ever since a bad infection.
Read from 5 of their posts and comments; links to the 4 this page draws on
Summary
A Reddit user with chronic fatigue syndrome and POTS had cervical spine stenosis and neck pain, plus difficulty holding up their head that began after a bad infection. Their PEM once left them unable to dress themselves, and they feared being housebound for life. Gabapentin eased their neck pain enough for gentle physical therapy and traction; after a month their PEM was largely gone and they walked close to two miles a day. A low-FODMAP diet drastically improved nearly two years of severe abdominal pain.
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What they tried
What they credit
Also tried
Their words about each treatment
- walking as much as I could · Worse
I was told to walk as much as I could when I was diagnosed & I kept beating myself up when I’d feel so much worse for days after a good health day/ walk.
In context ↗ - low fodmap diet · Helped a lot
as soon as I tried low fodmap I started feeling better
In context ↗ - manual cervical traction · Helped
when I manually lift my head/ create traction, my debilitating neck pain completely disappears
In context ↗ - laying flat during the day · Helped
I also feel significantly better when I make an effort to mostly lay flat during the day & take the pressure off my neck
In context ↗ - gabapentin · Helped
a doctor started me on gabapentin which allowed me to be in less pain and be able to start gentle physical therapy
In context ↗ - gentle physical therapy · Helped a lot
After only a month of PT my PEM was pretty much gone.
In context ↗ - recumbent bike reconditioning · Helped
I started doing that with a recumbent bike at 0 resistance for 1-2 minutes and gently worked up the amount of time I could do week by week.
In context ↗
Approaches: Diet · Other drugs and medicines · 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 |
|---|---|---|
| onset | ME/CFS after a bad infection; PEM so bad they could not dress themselvesmy PEM was so bad that I couldn’t dress myself some daysIn context ↗ | |
| 2020-10-09 | severe abdominal pain and nausea eased on a low-FODMAP dietas soon as I tried low fodmap I started feeling betterIn context ↗ | Low-FODMAP diet |
| 2021-01-28 | PEM largely gone after gabapentin-enabled gentle PT; walking close to 2 miles a day, still reconditioning POTSAfter only a month of PT my PEM was pretty much gone. ... I’m walking close to 2 miles a day now in addition to PT.In context ↗ |
Adverse events
- Everyday exercise and activity“I was told to walk as much as I could when I was diagnosed & I kept beating myself up when I’d feel so much worse for days after a good health day/ walk.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
my PEM was so bad that I couldn’t dress myself some days
In context ↗ - Gut problems
I had been in severe severe abdominal pain with nausea every time I ate due to accelerated gastric emptying/ IBS
In context ↗ - Pain & fibromyalgia
My cervical spine pain was really debilitating
In context ↗ - POTS & dysautonomia
I also had to work on reconditioning myself because I was also diagnosed with POTS
In context ↗
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