Bedridden every other week with ME/CFS; FODMAP diet and pacing helped, then relapse
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 5 months
- Last post
- Sep 2021
In their words
- Condition: ME/CFS
I’m so so sick of fucking cfs and all my god d**n allergies and f****ing intolerances!!
In context ↗ - At worst: Severe
I’ve gone from barely being able to get out of bed to use the bathroom or get downstairs to get food, etc., not being able to walk half the time and having to use a cane, falling over
In context ↗ - Now: Relapsed
I was awesome for about almost a month recently but now I’m right back to before with not being able to walk without my cane
In context ↗
Read from 17 of their posts and comments; links to the 12 this page draws on
Summary
A Reddit user was bedridden every other week for months, barely able to get out of bed or walk without a cane, with nerve and joint pain and food intolerances. They credited a gluten-free, dairy-free FODMAP diet plus pacing for a remission that allowed easy walking and a return to work as a nanny in September 2021. Later, wheat, soy and milk at work brought pain, fatigue and migraines, and the cane returned.
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What they tried
What they credit
Also tried
Their words about each treatment
- caffeine · Helped
caffeine used to help and now it makes me sleepy
In context ↗ - a cane · Helped
I bought a cane today and it’s made a world of difference!!
In context ↗ - pacing · Helped
what helped most was changing my diet! Mostly my diet but also pacing!
In context ↗ - more salt into my diet · Helped
Yes I’ve started incorporating more salt into my diet, it is working!!
In context ↗ - gluten free and dairy free diet based on FODMAPS · Helped a lot
I instantly felt better when I clean eat for a couple of weeks
In context ↗ - Acetaminophen · No change
I took 4 600 mg Acetaminophen pain medicine and it didn’t work.
In context ↗ - delta 8 vape pen · Helped
I find it helps more with ignoring it and staying calm more than pain relief.
In context ↗
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 |
|---|---|---|---|
| spring 2021 | onset of fatigue and pain; bedridden every other weekFor about a couple of months I was completely bedridden every other weekIn context ↗ | Severe | |
| mid-2021 | could barely get out of bed or walk, used a cane, fell overbarely being able to get out of bed to use the bathroom ... not being able to walk half the time and having to use a cane, falling overIn context ↗ | Severe | |
| 2021-07-17 | paced strictly for a day and got a burst of energyI really tried to pace today this time. ... Afterwards I had a burst of energy!In context ↗ | Moderate | Pacing and the energy envelope |
| 2021-08-13 | less fatigue and pain, could walk and use stairs with easehaving a lot more energy, less fatigue, and minimal pain where I can walk and walk up and down the stairs with easeIn context ↗ | Mild | |
| 2021-09-07 | back at work with no PEMOne week down of me back to work since remission and I’m still standing.In context ↗ | Near normal | |
| 2021-09-13 | ate wheat, soy and milk at work; pain, fatigue and cane returnednow I’m right back to before with not being able to walk without my cane and being weak and fatigued and exhausted and in painIn context ↗ | Moderate | |
| 2021-09-19 | severe upper back nerve pain, 8 acetaminophen takenI’ve been having severe upper back nerve pain that’s steadily gotten worse since yesterday and today it’s slowly gotten even worse.In context ↗ | Moderate |
Symptoms mentioned
Their words about their symptoms
- Brain fog
No brain fog too!!
In context ↗ - POTS & dysautonomia
I have fallen three times now ... it’s similar to Dysautonomia(POTS)
In context ↗ - Mast cell (MCAS) & allergies
I’m so so sick of fucking cfs and all my god d**n allergies and f****ing intolerances!!
In context ↗ - Sleep problems
I’ve been literally sleeping all day and I got up twice to heat up leftover food.
In context ↗ - Gut problems
Sometimes I just want have a pint of ice cream without getting extreme bloating!
In context ↗ - Breathlessness
out of breath immediately afterwards
In context ↗ - Heart symptoms & palpitations
fast heartbeat and out of breath immediately afterwards
In context ↗ - Neuropathy & tingling
shooting nerve pain in my back to where I couldn’t stand and piercing sharp and stabbing pain
In context ↗ - Anxiety & low mood
I need to figure this out because it’s stressing me out.
In context ↗ - Temperature regulation
I just got really cold. Like my insides feel cold.
In context ↗
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