ME/CFS
Severe → somewhat betterIll 1 year before improving or writingNeeds ongoing treatment
Bedbound with ME/CFS for almost a year, now somewhat better after aggressive rest
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 1 year
- Last post
- Feb 2025
In their words
- Condition: ME/CFS
I was diagnosed in 2023, with post-viral CFS and POTS (long covid).
In context ↗ - At worst: Severe
I was bedbound for almost a year, unable to even make tea or refill my water jug
In context ↗ - Now: Somewhat better
Over the past few months I have improved. I was bedbound for almost a year, unable to even make tea or refill my water jug, and now I can communicate online with random strangers.
In context ↗ - Began after: COVID
since a covid infection nearly 2 years ago
Read from 40 of their posts and comments; links to the 23 this page draws on
Summary
After a COVID-19 infection in early 2023 they were bedbound for almost a year with severe ME/CFS and POTS, unable to make tea or refill a water jug. Improvement came gradually, which they credited to aggressive rest, but an elective aneurysm operation in autumn 2024 caused their worst regression. By February 2025 they were still mostly bedbound but able to read and type, and reported saffron helped.
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What they tried
Also tried
acupressure· HelpedPEA· Helpedshaking meditation· Helpedsitting in the sun· Helpedmelatonin· Helpedhigh fruit diet· Helpedan NSAID· Helpedlow dose aspirin· No changerelaxing massage· Worsebenzos (lorazepam)· WorseOther surgery (adrenal, lung, venoplasty)· Worseindustrial strength blood thinners· Not saidLoops earplugs· Not saidprogressive relaxation· Not saidVitassium or Saltstick capsules· Not saidMagnesium· Not saidpsilocybin edibles· Not saidCBT· Not saidantibiotics· Not saidBupropion (Wellbutrin)· Not said
Their words about each treatment
- low dose aspirin · No change
I started low dose aspirin last Sept, because I'm aging. I also have long covid. I saw no change after starting.
In context ↗ - industrial strength blood thinners · Not said
I'm also now on industrial strength blood thinners due to an aneurysm stent install a few months ago. I guess I've been less foggy in the past few months
In context ↗ - Loops earplugs · Not said
Loops. I use them in all public settings, restaurants especially.
In context ↗ - progressive relaxation · Not said
lay on the floor/yoga mat/bed,, and do a progressive relaxation technique
In context ↗ - relaxing massage · Worse
I once asked for a relaxing massage... I was so relaxed I was unable to stay awake more than 30 minutes at a time for a couple days
In context ↗ - acupressure · Helped
I also get acupressure from time to time, and ask for it to be "energizing" rather than relaxing. Way better, feel awake after and a minor bit of symptom remission.
In context ↗ - PEA · Helped
I took 400 mg three times a day for a few weeks. I did feel an initial bump in energy after about a week, nothing drastic or life changing
In context ↗ - shaking meditation · Helped
I can easily trigger the shaking myself while relaxing as well. I have done this intentionally and it does feel somewhat of a release.
In context ↗ - aggressive rest · Helped
It's been almost 2 years of extreme severity, with aggressive rest as my only real therapy. Been working though, because I can look at a screen, read, and type now.
In context ↗ - Vitassium or Saltstick capsules · Not said
I take 3g of salt daily in the form of Vitassium or Saltstick capsules.
In context ↗ - Magnesium · Not said
I take a 300 mg Magnesium pill after dinner daily.
In context ↗ - benzos (lorazepam) · Worse
every time I've taken benzos I've passed out. ... I wake up 10 hours later, completely unrefreshed, with a hangover and brain fog
In context ↗ - psilocybin edibles · Not said
I have been microdosing mushrooms every month or two for the past 6 months. ... consume psilocybin edibles in a dose as small as 75 mg and as large as 500 mg.
In context ↗ - nattokinase · Helped
I felt better after taking it for about a week or so, 400 units 3x daily, and was planning on upping the dose when the blood thinners started.
In context ↗ - weed · Helped
weed. gentle massage.
In context ↗ - sitting in the sun · Helped
on days I sit in the sun, i feel better, like i'm solar powered lol.
In context ↗ - melatonin · Helped
I'm starting to use melatonin. Very low dose, 0.5 - 1 mg. Planning on taking it most nights.
In context ↗ - CBT · Not said
So, CBT. You just laid down to rest, and your magpie brain needs to know the answer to a question.
In context ↗ - high fruit diet · Helped
I've always eaten a high fruit diet. ... always better if I eat fruit in a day.
In context ↗ - an NSAID · Helped
Most of the migraine assist things seem to help me with it: bit of caffiene, an NSAID, ice pack on the neck/skull base
In context ↗ - saffron · Helped
I take 125 mg, dissolved in very sweet ginger tea or hot choco every morning for the past 4 weeks. ... I've felt much more with it and up the past few
In context ↗ - antibiotics · Not said
I just finished antibiotics for one caused by rewearing my Loops without washing in between.
In context ↗ - Bupropion (Wellbutrin) · Not said
Also, horrendous insomnia, and a very flat affect, all emotions were blunted.
In context ↗ - Other surgery (adrenal, lung, venoplasty) · Worse
After an aneurysm surgery in the fall that caused epic fucking regression
In context ↗
Approaches: Anticoagulants · Other drugs and medicines · Radical rest · Supplements
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 |
|---|---|---|
| 2023 | COVID-19 infection, never recoveredas soon as I got covid, I knew it would be lastingIn context ↗ | |
| 2023 | bedbound for almost a yearI was bedbound for almost a year, unable to even make tea or refill my water jugIn context ↗ | |
| 2024 | gradual improvement, less foggy and slightly more energyI've also had a slight increase in energy and decrease in all other symptoms, and was generally very gradually improving over timeIn context ↗ | Radical rest |
| fall 2024 | crashed after elective aneurysm surgeryI had an elective aneurysm surgery in the fall. Worst regression since I was diagnosedIn context ↗ | |
| December 2024 | able to read, type and post online againOver the past few months I have improved.In context ↗ | Radical rest |
| February 2025 | still mostly bedbound, more up after daily saffronI've felt much more with it and up the past few, enough to tolerate a visit from family with minimal PEM afterward.In context ↗ | Saffron |
Adverse events
- Massage“I was so relaxed I was unable to stay awake more than 30 minutes at a time for a couple days, nodding off every other blink, and unable to hold urine.” In context ↗ Made symptoms worse
- Acupressure, ear seeds and auricular devices“and it gave me mild/moderate PEM every time” In context ↗ Made symptoms worse
- Lorazepam (Ativan)“every time I've taken benzos I've passed out. ... I wake up 10 hours later, completely unrefreshed, with a hangover and brain fog of utter stupidity.” In context ↗ Made symptoms worse
- Melatonin“I've used larger doses of melatonin before (5-10 mg) and it was effective but omg the hangover. Groggy for at least one day afterward, and rebound insomnia the next day.” In context ↗ Side effects
- Bupropion (Wellbutrin)“Also, horrendous insomnia, and a very flat affect, all emotions were blunted.” In context ↗ Insomnia from treatment
- Bupropion (Wellbutrin)“a very flat affect, all emotions were blunted” In context ↗ Mood or psychiatric effects
- Other surgery (adrenal, lung, venoplasty)“After an aneurysm surgery in the fall that caused epic fucking regression” In context ↗ Made symptoms worse
- Earplugs and ear defenders (Loop)“I just finished antibiotics for one caused by rewearing my Loops without washing in between.” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogHeadaches & migraineLight & noise sensitivityPOTS & dysautonomiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
it gave me mild/moderate PEM every time
In context ↗ - Brain fog
I guess I've been less foggy in the past few months
In context ↗ - POTS & dysautonomia
with post-viral CFS and POTS (long covid)
In context ↗ - Sleep problems
I struggle to fall asleep most nights, and I wake up multiple times a night
In context ↗ - Light & noise sensitivity
Loops. I use them in all public settings, restaurants especially.
In context ↗ - Headaches & migraine
I wonder sometimes if it's just some kind of long, shallow migraine.
In context ↗ - Anxiety & low mood
still having intrusive thoughts and anxiety about it
In context ↗
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