Mostly at home with ME/CFS, now somewhat better after staying inside energy envelope
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 3 years
- Last post
- Oct 2020
In their words
- Condition: ME/CFS
I don’t have an official MECFS diagnosis, although I meet the dx criteria and have PEM like nobody’s business.
In context ↗ - At worst: Moderate
I do very little in my energy envelope and I’m always at home
In context ↗ - Now: Somewhat better
I’m just glad to have gotten to a point where I don’t constantly feel like I’m dying or wondering if I can get myself home, but it’s likely that’s the case because I do very little in my energy envelope and I’m always at home
In context ↗ - Began after: nothing they could name
this thing called post-exertional malaise has defined my life for the past two years, and intermittently for much, much longer than that
In context ↗
Read from 18 of their posts and comments; links to the 13 this page draws on
Summary
Tundra 18840 had post-exertional malaise for about two years alongside dysautonomia, hEDS, narcolepsy and migraine, while still working. A major crash in January 2020 left them mostly at home and too tired even for therapy. Withdrawing from social contact and staying inside their energy envelope eased their constant feeling of mortal peril, but they still did little and stayed home. They took vitamin D2, B12, protein powder and electrolyte drinks.
Ask Miruvor AI
What they tried
What they credit
Also tried
Their words about each treatment
- B12 supplementation · No change
I’ve taken more B12 than now in the past without *wow* results
In context ↗ - rx D2 and D3 supplements · Helped
my joints hurt less when I take 50 000 iu of rx D2, but not the same of D3
In context ↗ - Provigil · Worse
I thought provig was great until I tried nuvig and realized the other had been body-slamming me for a year
In context ↗ - Nuvigil · Helped
Nuvigil works for me; it doesn’t for some of my relatives.
In context ↗ - Strattera · No change
It didn’t do a whole lot for me on either front
In context ↗ - Xyrem · Helped
when I manage my narcolepsy with meds (Xyrem especially with daytime meds too), I rarely dream, rarely get night sweats
In context ↗ - therapy · Helped
I found therapy helpful when I worked with someone fluent in chronic health issues.
In context ↗ - energy envelope / pacing · Helped
it’s likely that’s the case because I do very little in my energy envelope and I’m always at home
In context ↗ - TriOral ORS, Normalyte and Gatorade · Helped
My daily go-to is TriOral ORS. ... This stuff is such a lifesaver.
In context ↗ - very light PT · Not said
doing very light PT (supine muscle flexes, working with stretchy band) if I feel like it to keep from dislocating
In context ↗ - NeilMed saline sinus rinse · Helped
My regular/ideal routine is NeilMed brand saline sinus rinse in a can
In context ↗ - Flonase Sensimist · Helped
Flonase Sensimist for allergies and boggy ears
In context ↗
Approaches: Pacing
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 |
|---|---|---|---|
| 2017 | post-exertional malaise becomes constant; still workingthis thing called post-exertional malaise has defined my life for the past two years, and intermittently for much, much longer than thatIn context ↗ | Mild | |
| 2019-12 | still sputtering to work, needs pacing guidancecurrently sputtering to work, need guidanceIn context ↗ | Mild | |
| 2020-01 | major crash; unsure they can bounce backEarlier this month, I started a major crash and I’m starting to realize I may not be able to just bounce back.In context ↗ | Moderate | |
| 2020-06 | too fatigued even to get to therapyI got to the point where literally *going* to therapy, not even being in therapy or doing therapy work, was too muchIn context ↗ | Moderate | |
| 2020-07 | withdrew from social contact and stayed inside their energy envelope; constant mortal peril feeling easedA large part of my recovery has been withdrawing from the usual interpersonal interactions and it has been so helpful. ... I do very little in my energy envelope and I’m always at home | Moderate | Pacing and the energy envelope |
Adverse events
- “Regular Ensure gives me tachycardia, but the Walgreens brand treats me ok.” In context ↗ Heart rhythm problems
- Modafinil / armodafinil“I thought provig was great until I tried nuvig and realized the other had been body-slamming me for a year” In context ↗ Made symptoms worse
- Modafinil / armodafinil“after a year I was needing more & more of it to do less & less (also wired and exhausted)” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
post-exertional malaise has defined my life for the past two years
In context ↗ - Brain fog
Had a longer question/background info started but brain fog derailed it
In context ↗ - POTS & dysautonomia
Through my discovery/dx process for dysautonomia & Ehlers-Danlos (hEDS)
In context ↗ - Sleep problems
I’m also highly susceptible to summer insomnia/winter conking out at 4 PM until 8 AM if not medicated
In context ↗ - Pain & fibromyalgia
my joints hurt less when I take 50 000 iu of rx D2
In context ↗ - Headaches & migraine
(hEDS, dysautonomia, narcolepsy yes it’s different from fatigue, migraines, CPTSD, ASD
In context ↗ - Gut problems
I’ve also been having gastro issues and rely on nutritional shakes because actual food makes bad things happen
In context ↗ - Mast cell (MCAS) & allergies
probable mast cell shenanigans
In context ↗ - Heart symptoms & palpitations
Regular Ensure gives me tachycardia
In context ↗ - Flu-like symptoms
Honey in my tea also helps soothe my throat if I get the overdone-it scratchies
In context ↗ - Anxiety & low mood
it took about 2 months of shut down to get over the constant mortal peril feeling
In context ↗
Ask Miruvor AI
Similar stories
-
Unable to walk around house with long COVID, much better after pacing and antihistamines
A Canadian man with long COVID for about three years was unable to walk around the house for the first two years, with constant migraines, brain fog and PEM. From year three, pacing, rest, stress reduction, H1/H2 antihistamines, hydroxyzine for sleep,…
-
Mostly bedbound and housebound with ME/CFS, pacing and rest helped before a relapse
Valley 16092 has had ME/CFS and fibromyalgia for about 25 years; stress and lifelong health problems led to a crash from 60-hour workweeks. They never became severe but have been mostly bedbound and housebound, and pacing, rest and comorbidity medication…
-
Mostly housebound with ME/CFS, now a little better on Klonopin and low-dose naltrexone
Joseph, 47, in Los Angeles, developed ME/CFS in January 2024, about 18 days after a second COVID infection. He declined from mild to the bad end of moderate over six months, becoming mostly housebound. Klonopin, low-dose naltrexone, midodrine and propranolol…
-
Long COVID brain fog, somewhat better with nicotine patch and naltrexone
Pebble 25278 developed long COVID with brain fog, distorted smell, headaches, nerve pain and trouble sleeping. A quarter of a 10 mg nicotine patch restored much of their speech and thinking, and low-dose naltrexone further raised their cognitive and physical…