Mostly housebound with ME/CFS, now somewhat better with pacing and meds
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 6 years
- Last post
- May 2025
In their words
- Condition: ME/CFS
I’m diagnosed with CFS
In context ↗ - At worst: Moderate
I was moderate, mostly housebound since 2019.
In context ↗ - Now: Somewhat better
I’m not healed, I’m not recovered, but I am improving
In context ↗ - Began after: injury or surgery
my CFS journey started after a pulmonary embolism and taking Eliquis for several months
Read from 24 of their posts and comments; links to the 18 this page draws on
Summary
Fjord 28977 was diagnosed with ME/CFS in 2019 after a pulmonary embolism and was mostly housebound, able to sit only an hour and rating themselves at 5% of earlier capacity. Over six years a specialist-guided mix of pacing, aripiprazole, low-dose naltrexone, valacyclovir, pregabalin and other medications, plus a shower chair, Q-collar and compression boots, brought them to roughly 10-15% of their old capacity. They remain mostly home-resting and say they are improving but not recovered.
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What they tried
What they credit
Also tried
Their words about each treatment
- physical therapy · No change
I would attend twice a week, and had no issue with the exercises themselves, but I would sleep extensively between therapy sessions.
In context ↗ - pacing · Helped
After years working with a specialist, pacing, the right combination of medications, and experience managing exertion I’ve expanded my energy envelope significantly.
In context ↗ - Aripiprazole · Helped a lot
Initially several of my symptoms cleared up, Christmastime was probably the best I’ve felt in two years.
In context ↗ - Trazadone · Helped
I took Trazadone for a while but it lost its effectiveness.
In context ↗ - Lorazepam · Worse
Then I tried Lorazepam, it was very very good for helping me sleep but it made me suicidal.
In context ↗ - Clonidine · Helped
I’m taking a combination of Clonidine and melatonin now. It does the job but it’s inconsistent.
In context ↗ - LDN · Helped
It took me about 3-4 months before I saw any results.
In context ↗ - Eliquis / blood thinners · Not said
I’ve taken blood thinners religiously for the past two years without incident.
In context ↗ - Pregabalin · Helped a lot
Pregabalin has been amazing for my pain. The days I forget to take a dose are like hell for me
In context ↗ - Famotidine · Helped
For me it’s been the combination of all of them together that seems to have contributed the most and each seems to target a different symptom.
In context ↗ - Bupropion · Helped
Bupropion has been the one that works best for me, but everyone is different.
In context ↗ - shower chair · Helped
Showering more frequently for less energy has actually been really really helpful.
In context ↗ - pneumatic compression boots · Helped
when I use this in the evenings it helps me sleep easier, reduces my pain, and reduces later PEM.
In context ↗ - ice packs · Helped
I use ice packs on my abdomen and the back of my neck, the areas that tend to overheat.
In context ↗ - Q-collar · Helped
it’s reduced my PEM symptoms significantly
In context ↗
Approaches: H2 blockers · POTS medication · Proton pump inhibitors · Alternative therapies · Antivirals · Beta-blockers · Other antidepressants · Other drugs and medicines · Pacing · Supplements
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 |
|---|---|---|---|
| 2019 | ME/CFS onset after pulmonary embolism; mostly houseboundI’d say I was at 5% of my original capacity in 2019In context ↗ | Moderate | |
| August 2020 | able to sit at a desk for a few hoursA year ago I could only sit for an hour max before needing to lay down for a few hours to recover, but today I’m able to sit at a desk for a few hoursIn context ↗ | Moderate | |
| December 2020 | best they had felt in two years after starting aripiprazoleInitially several of my symptoms cleared up, Christmastime was probably the best I’ve felt in two years.In context ↗ | Moderate | Low-dose Abilify / aripiprazole |
| May 2023 | health improving, testing new limitsmy health has been improving recently and it made sense for me to test my new limitsIn context ↗ | Moderate | |
| April 2024 | energy envelope expanded with specialist-guided pacing and medicationsI still spend most of my time at home resting, but I’m able to do so much more right now.In context ↗ | Moderate | Pacing and the energy envelope |
| May 2025 | still improving, using Q-collar and compression boots to cut PEMThird is a Q-collar. It’s pricey (~$200), but it’s reduced my PEM symptoms significantly.In context ↗ | Moderate |
Adverse events
- Lorazepam (Ativan)“Then I tried Lorazepam, it was very very good for helping me sleep but it made me suicidal.” In context ↗ Suicidal thoughts or attempt
- Pregabalin (Lyrica)“The days I forget to take a dose are like hell for me” In context ↗ Withdrawal problems
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
What triggers my PEM though is when my heart rate goes above 120 for longer than 2 minutes.
In context ↗ - Brain fog
my brain fog is nearly non-existent right now except after some level of exertion
In context ↗ - Headaches & migraine
I used to have horrible migraines almost daily. They stopped when I started taking Abilify
In context ↗ - Sleep problems
I’ve gone nearly full nocturnal since my diagnosis.
In context ↗ - Pain & fibromyalgia
Pregabalin has been amazing for my pain.
In context ↗ - POTS & dysautonomia
I’ve been diagnosed with POTS, Fibromyalgia, and Ulcerative Colitis.
In context ↗ - Temperature regulation
Temperature regulation sucks, and it’s easy to get overheated.
In context ↗
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