ME/CFS
Outcome unclearIll for 6 years
Mostly bedridden with ME/CFS, moderate and mostly housebound, credits rest and de-stressing
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 6 years
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
I have the me/cfs subtype
In context ↗ - At worst: Severe
Went steadily downhill for 5 years until mostly bedridden
In context ↗ - Says they never had: POTS & dysautonomia
I don't have pots but electrolytes/water make a huge difference to me
Read from 84 of their posts and comments; links to the 31 this page draws on
Summary
Tulip 91616 was an urgent care worker in December 2019 and declined to mostly bedridden over four to five years. From year five they improved to moderate and mostly housebound, crediting aggressive rest and de-stressing, later helped by a power chair that reduced PEM. In April 2026 they could walk only about 300 feet; by October 2026 they could sit up three hours and drive short trips. A cold once set them back to severe for two months.
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What they tried
Also tried
chewable dhg tablets· Helpedpropranolol· HelpedLDN· HelpedH1 inhibitors· Helpedmotorized wheelchair· Helpedphysical therapy· Helpedelectrolyte pills (Vitassium) and compression garments· Helpedelectrolyte pills (Vitassium) and compression garments· Helpedmarijuana· Helpedmelatonin· Helpedeating less with a vegetable-heavy diet· Helpedsleeping pills (trazodone or hydroxyzine)· HelpedWellbutrin (bupropion)· Helpedice pack to neck and chest· HelpedJohn Hopkins long covid clinic· Helpedbiologic for the food allergies· HelpedCromolyn· HelpedProbiotics· Helped · wore offextra fiber· Helped · wore offFlorinef· Helpedmidodrine· Helpedaggressive rest and de-stressing my life· HelpedH2 inhibitors· No changedigestive enzymes· Not saidCOVID vaccination as treatment· Not said
Their words about each treatment
- chewable dhg tablets · Helped
When I had gastritis symptoms it was a lifesaver
In context ↗ - propranolol · Helped
I take 60mg time release and I've stopped having a racing heart rate at night or while eating.
In context ↗ - LDN · Helped
It works for me
In context ↗ - H1 inhibitors · Helped
I'm on mcas treatment (2 OTC allergy pills, a biologic for the food allergies, and cromolyn) and I see improvement with the mcas symptoms but not with the chronic fatigue.
In context ↗ - H2 inhibitors · No change
h1 and H2 inhibitors (allergy medicine) don't do squat for me
In context ↗ - motorized wheelchair · Helped
being able to use it instead of pushing myself beyond my limits helped reduce pem and I regained some of my abilities, I'm moderate instead of moderate-severe
In context ↗ - physical therapy · Helped
It's helping. It's making a difference, and it's not over-exerting myself.
In context ↗ - electrolyte pills (Vitassium) and compression garments · Helped
I don't have pots but electrolytes/water make a huge difference to me, same with compression garments.
In context ↗ - marijuana · Helped
Weed helps my body relax in a way nothing else does.
In context ↗ - melatonin · Helped
My sleep medicine doctor told me to take my melatonin 4 hours before I wanted to get to sleep ... It made a huge difference.
In context ↗ - eating less with a vegetable-heavy diet · Helped
I feel best when half my food is veggies, I feel worst when I don't eat veggies every day.
In context ↗ - digestive enzymes · Not said
I struggled to figure out which digestive enzymes to buy so I ended up just looking for whichever one has the most types of enzymes.
In context ↗ - sleeping pills (trazodone or hydroxyzine) · Helped
I take sleeping pills for that reason. Still wake up once a week and can't get back to sleep for 2 hours, but it's better than it had been.
In context ↗ - Wellbutrin (bupropion) · Helped
I find it helpful but it makes be nauseas.
In context ↗ - ice pack to neck and chest · Helped
I've started holding an ice pack to my neck and chest and it helps some.
In context ↗ - John Hopkins long covid clinic · Helped
they've given me multiple helpful medications and had me in a memory training program through speech therapy that was helpful
In context ↗ - Cromolyn · Helped
I'm supposed to take it 4 times a day but it causes me headaches so I take it twice a day and it helps like 30%.
In context ↗ - Probiotics · Helped
Probiotics. They fixed me for up to a week but don't work consistently.
In context ↗ - extra fiber · Helped
Extra fiber. Will help for a day or two, but then I go back.
In context ↗ - Florinef · Helped
I took it for a month and it helped me out of a crash, he upped the dose, nothing happened, I stopped taking it, nothing changed.
In context ↗ - midodrine · Helped
I think midodrine helps about 5%.
In context ↗ - aggressive rest and de-stressing my life · Helped
I used to be severe and now I'm back to moderate after de-stressing my life and aggressive rest.
In context ↗ - COVID vaccination as treatment · Not said
I only get novavax because it's the only one that doesn't give me side effects.
In context ↗
Their path
They say too little about how ill they were at each step to draw it on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened | Where they were | After |
|---|---|---|---|
| December 2019 | fell ill with COVID as an urgent care worker; initially mildDecember 2019, urgent care worker.In context ↗ | Mild | |
| 2024 | steady decline to mostly bedridden, 23 hours a day in bedI went downhill for 4 years until mostly bedridden, then started improving year 5 to mostly housebound.In context ↗ | Severe | |
| 2025 | improved from severe to moderate, mostly houseboundI used to be severe and now I'm back to moderate after de-stressing my life and aggressive rest.In context ↗ | Moderate | Radical rest |
| — | crash to severe for two months after a coldI'm moderate, last time I got the sniffles I spent two months severe.In context ↗ | Severe | |
| April 2026 | able to sit up most of the day and take short drives againNow I can sit up for most of the day and not even notice, I almost never need to rest throughout the day.In context ↗ | Moderate | Radical rest |
| October 2026 | up 16 hours a day, sitting upright for hours, driving short tripsI went from 23 hours in bed to 16 hours in bed a day. I can drive to locations under 2 miles.In context ↗ | Moderate |
Adverse events
- Physical therapy / physiotherapy“I've had bad experiences in pt before where I pushed myself too hard before I knew my limits.” In context ↗ Made symptoms worse
- Bupropion (Wellbutrin)“I find it helpful but it makes be nauseas.” In context ↗ Gut side effects
- COVID vaccination as treatment“I only get novavax because it's the only one that doesn't give me side effects.” In context ↗ Side effects
- Cromolyn (Gastrocrom, Nalcrom)“I'm supposed to take it 4 times a day but it causes me headaches so I take it twice a day” In context ↗ Side effects
- Cannabis (THC, marijuana)“Weed helps with this, but now I need to smoke to get to sleep.” In context ↗ Other
Symptoms mentioned
Anxiety & low moodBrain fogGut problemsHeart symptoms & palpitationsLight & noise sensitivityMast cell (MCAS) & allergiesMuscle weaknessNeuropathy & tinglingPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
- Post-exertional malaise
helped reduce pem and I regained some of my abilities
In context ↗ - Brain fog
But it doesn't matter, because brain fog
In context ↗ - Mast cell (MCAS) & allergies
I have mcas symptoms (ibs, runny nose, phlegmy after eating, 2 new food allergies)
In context ↗ - Sleep problems
I take sleeping pills for that reason. Still wake up once a week and can't get back to sleep for 2 hours
In context ↗ - Pain & fibromyalgia
Heating pad with a blanket on top to hold in the warmth helps my muscle pain.
In context ↗ - Gut problems
3 things affect my loose stool, although not consistently.
In context ↗ - Light & noise sensitivity
it is *so much more comfortable* to always have glaring white and blue lights cut down
In context ↗ - Heart symptoms & palpitations
I've stopped having a racing heart rate at night or while eating
In context ↗ - Muscle weakness
I still can't walk out stand worth shit
In context ↗ - Neuropathy & tingling
I get a mild buzzing when I'm in pem.
In context ↗ - Temperature regulation
I feel like My body doesn't have the energy to keep me warm.
In context ↗ - Anxiety & low mood
now that I'm not actively going downhill I don't have a lot of the fear and the dread that I used to
In context ↗