Housebound and often bedridden with ME/CFS, now mild; pacing and POTS treatment helped
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 11 years
- Last post
- Apr 2024
In their words
- Condition: ME/CFS
I got sick with ME/CFS in my teens, and it was severe.
In context ↗ - At worst: Severe
I was housebound for about six years and mostly bedridden for about half of that.
In context ↗ - Now: Much better
I’m now in the mild category, though I continue to have crashes now and then.
In context ↗
Read from 40 of their posts and comments; links to the 21 this page draws on
Summary
She became ill with ME/CFS at 13 and was severe, housebound and often bedridden for about six years before years of forced rest brought her to moderate and eventually mild; she returned to school, later part- and full-time. A long relapse, COVID-19 and an in-person evening class set her back. Heart-rate-based pacing helped, and treating her POTS with electrolytes and midodrine lifted a six-month crash, leaving her mild with occasional crashes.
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What they tried
What they credit
Also tried
Their words about each treatment
- rest · Helped
After years of rest, I got to a place of being moderate and could go back to school.
In context ↗ - Medical Medium protocols · Worse
my family pushed/forced me into a lot of the methods, ideas, recommendations found from medical medium
In context ↗ - Antibiotics · Helped
Antibiotics have helped me a lot several times
In context ↗ - low-FODMAP diet · Helped
a low-FODMAP diet helped some for a while
In context ↗ - no sugar no dairy diet · No change
Yes and did nothing good for me.
In context ↗ - Wellbutrin · Helped
I’ve taken Wellbutrin for over a year, and it was the first medication that helped me. It didn’t cause a massive change for me, but it helps with fatigue and my mood.
In context ↗ - chiropractic adjustments · Helped
Yep, I get chiropractic adjustments pretty frequently. My neck and back get out of whack easily, so adjustments help with that pain and headaches.
In context ↗ - physical therapy · Helped
Physical therapy has helped my back pain in the past, but more recently I haven’t had the energy to devote to it.
In context ↗ - salt and electrolytes · Helped
My fatigue and brain fog started getting better when I began accidentally treating POTS, like with lots of salt, before I knew I had it.
In context ↗ - HR-based pacing · Helped
then I continued improving with HR-based pacing
In context ↗ - therapy · Helped
A turning point for my panic attacks and depression was seeing a good therapist who really listened, was understanding, and challenged me in positive, approachable ways.
In context ↗ - low dose hydrocortisone · Helped
Low dose hydrocortisone helped me for a while too when my cortisol levels were all wonky. Wasn’t a long-term thing for me though.
In context ↗ - midodrine · Helped
Midodrine is helping me with brain fog and fatigue. It’s only been a few weeks, but I function better for longer through the day so far.
In context ↗ - clinician-led EEG-based neurofeedback · Helped
I’ve done clinician-led EEG-based neurofeedback for comorbidities related to my health and life, like chronic pain and anxiety/depression, which has indirectly helped my fatigue.
In context ↗
Approaches: CBT & mindset · POTS medication · Pacing · Radical rest
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. 1 step has no time and sits in story order between the steps around it. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| age 13 (teens) | became ill with ME/CFS in her teens, severeI got sick with ME/CFS in my teens, and it was severe.In context ↗ | Severe | |
| teens | housebound about six years, mostly bedridden for half of itI was housebound for about six years and mostly bedridden for about half of that.In context ↗ | Severe | |
| until age 20 | improved to moderate after years of forced rest and started school one class at a timeAfter years of rest, I got to a place of being moderate and could go back to school.In context ↗ | Moderate | Radical rest |
| a few years before 2021 | mild for several years; could walk miles, run short distances and travelI could concentrate for hours, run short distances, walk for miles, travel a bitIn context ↗ | Mild | Radical rest |
| 2021-10 | went backwards after abandoning pacing and starting in-person classesI’ve been getting worse lately. I thought I was staying decently in my limits, but I’ve been crashing hard.In context ↗ | Moderate | |
| late 2022 | continued improving after a long relapse and COVID-19then I continued improving with HR-based pacingIn context ↗ | Mild | Pacing and the energy envelope |
| 2023 | six month long crasha six month long crash finally began liftingIn context ↗ | Moderate | |
| 2024-03 | six-month crash lifted once POTS was managedonce I got a better idea of how to manage my POTS, a six month long crash finally began liftingIn context ↗ | Mild | Salt, electrolytes and fluids |
| 2024-03 to 2024-04 | mild category, still crashes now and thenI’m now in the mild category, though I continue to have crashes now and then.In context ↗ | Mild |
Adverse events
- Bupropion (Wellbutrin)“I tried 300mg for a couple days, but it resulted in bad anxiety.” In context ↗ Mood or psychiatric effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I still have PEM and treating POTS haven’t fixed everything by any means
In context ↗ - Brain fog
Midodrine is helping me with brain fog and fatigue.
In context ↗ - POTS & dysautonomia
Recently learned I have POTS.
In context ↗ - Sleep problems
even when I was mild it took tons of time to get up in the morning
In context ↗ - Pain & fibromyalgia
My back hurts almost all the time
In context ↗ - Headaches & migraine
so adjustments help with that pain and headaches
In context ↗ - Gut problems
my bloating has mostly been due to SIBO/IBS
In context ↗ - Light & noise sensitivity
Sounds of any decibel would inflate in my brain and be perceived as a loud, jumbled mess.
In context ↗ - Breathlessness
My muscles gave out, leaving me breathless, dizzy, nauseous
In context ↗ - Muscle weakness
Sometimes my muscles would generally refuse to contract.
In context ↗ - Anxiety & low mood
I eventually started having panic attacks
In context ↗ - Flu-like symptoms
with a sore throat, swollen lymph nodes
In context ↗ - Vision problems
my eyes couldn’t focus on any people or objects or walls around me
In context ↗
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