ME/CFS
Severe → no benefitNeeds ongoing treatment
Housebound with ME/CFS, POTS and FND, nearly bedbound after a crash
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- Not stated
- Last post
- Feb 2026
In their words
- Condition: ME/CFS
my long covid eventually turned into CFS (last year)
In context ↗ - At worst: Severe
now I mostly use a wheelchair around the house when previously I only needed it when I went out
In context ↗ - Now: No benefit
I feel like going downhill regardless of what I do.
In context ↗ - Began after: COVID
Me/CFS, POTs and FND have taken that away from me (these all happened post covid for me)
Read from 63 of their posts and comments; links to the 31 this page draws on
Summary
Tide 99613 was already disabled by fibromyalgia before catching COVID-19 twice. The second infection put her in hospital with pneumonia and on home oxygen, and her long COVID became ME/CFS, with POTS and FND. Mostly housebound and in between moderate and severe, she paced with heart-rate alerts and used a wheelchair; a crash in 2023 left her nearly bedbound for about a month.
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What they tried
Also tried
therapy· Helped2 beta blockers· HelpedApple watch heart rate alerts· Helpedwheelchair· Helpedearplugs· Helpedpacing· Helpedaggressive rest· Helpedpain killers· HelpedPalexia· HelpedCPAP machine· Helpedstretches in bed· HelpedMagnesium 150mg· HelpedPassionflower 300mg· HelpedHops 400mg· HelpedInositol 12.49mg· Helpedcoffee· Helpedcelecoxib· Helpedcymbalta· HelpedLyrica· Helpedvisible app· Helpedsome supplements· Helpedimplanon· Helpedenergy gummies· Helpedenergy patch· Helpedmigraines medicine· HelpedNeurological physiotherapist· Worsethe patch· Worseozempic· Much worseoxygen· Not saidradio frequency ablation· Not saidtargin· Not saiddiazepam· Not saidPT· Not saidYoga· Not saidthe pill, ring and shot· Not said
Their words about each treatment
- oxygen · Not said
Oh yes I have a portable tank and a O2 concentrator at home.
In context ↗ - therapy · Helped
It's taken me maybe 8+ years of therapy to get this far
In context ↗ - 2 beta blockers · Helped
I'm on 2 beta blockers and even then I feel like I'm running marathons just existing BUT I don't go above maybe 110?
In context ↗ - Apple watch heart rate alerts · Helped
I just have my Apple watch warn me at a certain number rather than staring at it all day.
In context ↗ - wheelchair · Helped
So while I got my wheelchair because of mobility issues it helps me greatly to go out
In context ↗ - Neurological physiotherapist · Worse
I tried a Neurological physiotherapist but I think even that is too much
In context ↗ - ozempic · Much worse
I tried it it gave me a gallstone and my gallbladder is messed up ever since
In context ↗ - earplugs · Helped
it was amazing made going out and restaurants more bearable
In context ↗ - pacing · Helped
It's all about saving energy cost wherever you can :( I hate it but it helps me chug along.
In context ↗ - aggressive rest · Helped
I will aggressively rest and do near nothing 3 days prior
In context ↗ - pain killers · Helped
My GP gave me some guidance (this debacle started LAST Wednesday) to up some of my pain killers
In context ↗ - radio frequency ablation · Not said
I can have radio frequency ablation done I was having that done in the states
In context ↗ - Palexia · Helped
I started an opioid called Palexia recently that's slow release it's been helpful
In context ↗ - targin · Not said
I was getting dependant where the dosage was getting higher and higher so we stopped that one.
In context ↗ - CPAP machine · Helped
I fell off the wagon with my CPAP machine about a year ago while I know it helps ... I did truly sleep better
In context ↗ - stretches in bed · Helped
I have FND so doing stretches in bed help along prevent my legs from waking paralyzed
In context ↗ - Magnesium 150mg · Helped
Magnesium 150mg ▶️ Muscle Relaxant help reduce muscle cramps
In context ↗ - Passionflower 300mg · Helped
Passionflower 300mg ▶️ (sleep support) induce sleep and decrease disturbed sleep
In context ↗ - Hops 400mg · Helped
Hops 400mg ▶️ (Nervous system support) traditionally used in western herbal medicine to soothe and calm the nerves
In context ↗ - Inositol 12.49mg · Helped
Inositol 12.49mg ▶️ balances certain chemicals in the body to help with mental conditions such as panic disorder, depression, and obsessive-compulsive disorder
In context ↗ - coffee · Helped
I'm a huge coffee drinker so I get headaches when I don't and really grumpy lol also helps with my migraines
In context ↗ - celecoxib · Helped
it's never helped me in the CFS department at all. ... If I forget to take my celebrex my whole body feels stiff LIKE IMMEDIATELY.
- diazepam · Not said
I try to reach for my diazepam before I get that far.
In context ↗ - cymbalta · Helped
I was able to do PT 2-3 times a week, manage with cymbalta And Lyrica and pain killers
In context ↗ - PT · Not said
I was able to do PT 2-3 times a week
In context ↗ - Yoga · Not said
Even Yoga (not the bs type everyone else does i followed someone on YouTube it's gentle meant for chronic illness)
In context ↗ - visible app · Helped
There's a free app it helps me kinda try and figure out without the armband.
In context ↗ - some supplements · Helped
he prescribed some supplements that have kept my migraines getting horrid
In context ↗ - implanon · Helped
For me the only BC that's helped me is the implanon.
In context ↗ - the patch · Worse
I did not react well to any other BC I tried the patch (made me bleed like crazy)
In context ↗ - the pill, ring and shot · Not said
the pill was hard to remember to take all the time etc, the ring i found difficult to insert and remove always felt uncomfortable for me, I was doing the shot before the implanon.
In context ↗ - energy gummies · Helped
These energy gummies I've been taking helps me get past that initial mud and helps me get out of bed a bit
In context ↗ - energy patch · Helped
coffee + energy patch (which happens to mask my PEM idk if that's a bad thing) it lets me do a little bit more and not crash as much
In context ↗ - migraines medicine · Helped
my migraines medicine she prescribed helped immediately
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. The chart starts 18 months after onset: the story doesn’t say how ill they were before that. 2 steps have no time and sit in story order between the steps around them. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| June 2023 | crash after overexertion; severely fatigued for two weeksI overexerted myself 2 weeks ago... I feel like it got worse I've been severely fatigued for 2 weeks nowIn context ↗ | Severe |
| 2023 | pushed themselves during a friend's visit; nearly bedbound for about a monthI was severe nearly bed bound where even eating was too much I couldn't even chew my own foodIn context ↗ | Severe |
| 2024 | crawled back to a moderate-to-severe baselineI was able to crawl back to where I am now it's a more moderate to severe kind of thing nowIn context ↗ | Moderate |
| September 2024 | pinched nerve in their back lowered their baselineI feel like even my baseline has lowered because this has also required ALOT of medical adminIn context ↗ | Moderate |
| September 2024 | back to their baseline after nearly two monthsI think finally at my baseline again after nearly 2 months but it only lasted half of the dayIn context ↗ | Moderate |
| August 2025 | still mostly housebound in a very small energy envelopeLately my energy envelope is so small once I make breakfast (which arguably my favorite lol) i end up being so tired ughIn context ↗ | Moderate |
Adverse events
- Graded rehab and self-made programmes“I tried a Neurological physiotherapist but I think even that is too much” In context ↗ Made symptoms worse
- Semaglutide (Ozempic, Wegovy)“it gave me a gallstone and my gallbladder is messed up ever since” In context ↗ Other
- Semaglutide (Ozempic, Wegovy)“my stomach issues started right after I had to stop ozempic because of the shortage as well” In context ↗ Gut side effects
- Semaglutide (Ozempic, Wegovy)“my appetite returned 10 fold and my stomach has been messed up since” In context ↗ Withdrawal problems
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessFlu-like symptomsGut problemsHeadaches & migraineLight & noise sensitivityNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
If I don't do those things I will crash and PEM will take over for far longer then my aggressive rest days
In context ↗ - Brain fog
My mind always wakes up feeling like I'm in a fog or there are days where it feels like trudging through mud to think and or concentrate
In context ↗ - POTS & dysautonomia
I was diagnosed with POTs and ME/CFS after having covid twice
In context ↗ - Pain & fibromyalgia
my joints have been hurting since 2023
In context ↗ - Sleep problems
feeling unrested regardless of how much you slept
In context ↗ - Headaches & migraine
I always low key have a minor migraine running in the background
In context ↗ - Gut problems
my stomach has been horrible since
In context ↗ - Light & noise sensitivity
To minimize the lights making me sick I wore my migraine glasses
In context ↗ - Anxiety & low mood
Which results in a panic attack. I try to reach for my diazepam before I get that far.
In context ↗ - Neuropathy & tingling
I have nerve pain in my legs as well from other stuff
In context ↗ - Breathlessness
I was hospitalized on oxygen together with Pneumonia and went home with oxygen for a few months
In context ↗ - Flu-like symptoms
Idk it happens randomly on somedays but it's never been constant
In context ↗