ME/CFS
Severe → no benefitIll for 3 yearsNeeds ongoing treatment
ME/CFS with brain fog and PEM, still recliner-bound, no improvement
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 3 years
- Last post
- Jul 2026
In their words
- Condition: ME/CFS
I am in a gray area with ME/CFS right now because I have such terrible PEM which simply cannot be explained away by narcolepsy
In context ↗ - At worst: Severe
I can do most activities for about 45 minutes if I pregame nap. But I'll start to crash
In context ↗ - Now: No benefit
I start college in two months and as of right now I'm going with crushing fatigue that's out of control.
In context ↗ - Began after: injury or surgery
mine was knee surgery at 15, after that I went systemically downhill extremely quickly compared to my consistent joint and headache struggles
Read from 27 of their posts and comments; links to the 17 this page draws on
Summary
A 17-year-old in Alabama who got sick at 14, with severe hypermobile EDS, narcolepsy type 1, POTS and MCAS, and suspected ME/CFS. Treating narcolepsy and POTS controlled micronaps and dysautonomia, but exhaustion, brain fog and PEM worsened, and they dropped out of school. Rib surgery, a feeding tube for severe IBS and ARFID, and wisdom-teeth surgery followed; they remained recliner-bound and unable to work 3+ hours a day.
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What they tried
Also tried
Lo Loestrin· Helped a lotCPAP· Helpedarmodafinil· HelpedH2 blockers· Helpedbeta blocker· Helpedmidodrine· Helpedantihistamines· HelpedNG tube feeding· Helpeddelta 9 sleepytime gummy· HelpedSIBO treatment· No changestimulants· No changesodium oxybates· No changeprogestin-only mini-pill· Worsehydrocodone· WorseSSRI· Not saidtherapy· Not saidPT· Not saidrib surgery· Not saidiron infusions· Not saidwisdom teeth removal· Not saidPercocet· Not saidProgesterone (Prometrium, Utrogestan)· Not saidEstrogen (estradiol)· Not said
Their words about each treatment
- SSRI · Not said
I’ve been on an SSRI for 4 years and have been steadily doing okay until recently
In context ↗ - progestin-only mini-pill · Worse
All three of us had worsened symptoms and moods on progestin only
In context ↗ - Lo Loestrin · Helped a lot
Lo Loestrin has saved my life. I had rapidly developing endometriosis and got on it at 14
In context ↗ - therapy · Not said
I’ve been going to therapy throughout the process but stopped going a bit ago when I was too sleepy to stay awake during sessions
In context ↗ - PT · Not said
I go to PT twice a week
In context ↗ - SIBO treatment · No change
Treated sibo and got no improvement.
In context ↗ - CPAP · Helped
I was diagnosed with moderate sleep apnea and had minimal improvement on cpap
In context ↗ - armodafinil · Helped
and started armodafinil. I still struggle with the all encompassing exhaustion, but I sleep a lot less during the day
In context ↗ - H2 blockers · Helped
they’re actually symptom free since treating narcolepsy and starting H2 blockers, a beta blocker, midodrine and antihistamines
In context ↗ - beta blocker · Helped
treating my narcolepsy has made my POTS symptom free as long as I’m taking my beta blocker and vasoconstrictor
In context ↗ - midodrine · Helped
starting H2 blockers, a beta blocker, midodrine and antihistamines
In context ↗ - rib surgery · Not said
had slipped ribs that collapsed into my stomach and liver (best surgeon ever changed my life in that regard)
In context ↗ - NG tube feeding · Helped
I have severe IBS and finally am symptom free, as well as ARFID
In context ↗ - stimulants · No change
I've tried every stimulant/sodium oxybates and nothing helps at all
In context ↗ - iron infusions · Not said
ferritin at 4 but I get infusions
In context ↗ - delta 9 sleepytime gummy · Helped
the only thing that helped was taking a full dose of a delta 9 sleepytime gummy
In context ↗ - wisdom teeth removal · Not said
I managed to get 2 dry sockets on my bottom row
In context ↗ - hydrocodone · Worse
they prescribe a solid amount of hydrocodone which I had a mast cell reaction to
In context ↗ - Percocet · Not said
they just sent in Percocet
In context ↗ - Progesterone (Prometrium, Utrogestan) · Not said
All three of us had worsened symptoms and moods on progestin only, and all three of us spotted constantly with a ridiculously heavy and long cycle.
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| age 14 | symptoms began after repeated head shots in hockeyI was 14 when I had my first mri after post concussive symptomsIn context ↗ | Mild |
| August 2024 | crashed after finishing a hockey season, dropped out of school and stopped workingas soon as I quit and my body realized it was safe, I crashed harder than anythingIn context ↗ | Moderate |
| December 2024 | rib surgery, then recliner-bound and unable to bend or twist for monthsI’m pretty recliner bound recovering from surgeryIn context ↗ | Severe |
| July 2026 | still crushing fatigue, tube-fed, cannot work 3+ hours a dayas of right now I'm going with crushing fatigue that's out of controlIn context ↗ | Severe |
Adverse events
- Physical therapy / physiotherapy“I’m starting to cry doing PT when we’ve worked up so slowly and I still lay down or sit for my exercises” In context ↗ Made symptoms worse
- “I think the final straw was my recent rib surgery” In context ↗ Made symptoms worse
- Progesterone (Prometrium, Utrogestan), Estrogen (estradiol)“All three of us had worsened symptoms and moods on progestin only, and all three of us spotted constantly with a ridiculously heavy and long cycle.” In context ↗ Side effects
- Hydrocodone (Vicodin, Norco)“a solid amount of hydrocodone which I had a mast cell reaction to” In context ↗ Allergic reaction / anaphylaxis
- Tube feeding (NG, NJ, PEG, TPN)“it was agonizing because my left nostril has a septal obstruction that isn’t visible so she jammed it into a wall up my nose for like 10 minutes” In context ↗ Side effects
- Tube feeding (NG, NJ, PEG, TPN)“After a concert I had to gurgle warm water because it had twisted and I was gagging on it” In context ↗ Side effects
- “I also use benzocaine gel up my nostril if I’m having nerve pain, which burns terribly but completely numbs it” In context ↗ Side effects
Symptoms mentioned
Flu-like symptomsGut problemsHeadaches & migraineMast cell (MCAS) & allergiesMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
I have such terrible PEM which simply cannot be explained away by narcolepsy
In context ↗ - POTS & dysautonomia
I also have dysautonomia. I have POTS
In context ↗ - Mast cell (MCAS) & allergies
I had a mast cell reaction to
In context ↗ - Sleep problems
i still have severe sleep inertia and ongoing exhaustion
In context ↗ - Gut problems
I have severe IBS and finally am symptom free
In context ↗ - Pain & fibromyalgia
my ribs aren’t attached and they’re hitting nerves and my GI tract and wreaking havoc
In context ↗ - Headaches & migraine
my consistent joint and headache struggles
In context ↗ - Muscle weakness
sudden weakness of arms, legs, and neck
In context ↗ - Flu-like symptoms
flu like symptoms, severe brain fog and loss of speech
In context ↗ - Neuropathy & tingling
they’re hitting nerves
In context ↗