Barely able to stand or walk with ME/CFS, somewhat better with pacing and diet

Condition: ME/CFS
At worst: Moderate (mostly housebound)
Ill before improving or writing: 4 years
Last post: Oct 2026

In their words

Condition: ME/CFSI have mild to moderate me/CFS, pots, and mcas like symptoms. In context ↗
At worst: ModerateI basically just work and go home and lay in bed. Don't hang out with friends, don't go out, don't date In context ↗
Now: Somewhat betterMine isnt as brutal as at the beginning but it's chilled out a bit because I'm not flaring myself 24/7 now. In context ↗
Began after: COVIDLC hit me after an infection
Says they never had: Loss of smell or tasteI basically have every symptom other than taste and smell type stuff.

Read from 200 of their posts and comments; links to the 66 this page draws on

Summary

He fell ill with long COVID after an infection, then over months crashed to barely being able to stand or walk, with full-body joint pain and PEM. Repeated reinfections worsened his MCAS and ME/CFS. Quitting alcohol, caffeine, nicotine and sugar from 2024, mostly low-histamine eating, pacing and Celebrex eased his flares. Almost three years on he was still limited, though he said he was better than before.

Ask Miruvor AI

What they tried

What they credit

psilocybin mushrooms· Helped a lot loratadine (Claritin)· Helped Zyrtec (cetirizine)· Helped Pepcid AC (famotidine)· Helped ashwagandha· Helped ginseng complex· Helped 24 hour water fasts· Helped 72 hour water fast· Helped intermittent fasting (two meals a day, 8 hour window)· Helped gluten free diet· Helped low histamine diet· Helped · main pacing· Helped · main sun exposure· Helped vitamin D3· Helped

Also tried

Celecoxib (Celebrex)· Helped a lot · wore offcannabis (THC, CBD and other cannabinoids)· Helpedcognitive health gummy (bacopa monnieri and pine bark extract)· Helped valerian root· Helped magnesium· Helped sea salt in water· Helped taurine· Helpedheart chakra opening session· Helpedcalling out parents / addressing childhood trauma· Helpedfiber rich foods (chia seeds, beans)· Helpedhigher protein intake· Helped aspirin· No change vaping nicotine· Worse ibuprofen· Worse Tylenol (acetaminophen)· Worse alcohol· Worse caffeine· Worsesugar and sweets· Worsefermented foods· Worsephysical therapy· Worse light stretching· Worse fentanyl· Worse exercising through symptoms (skateboarding, cardio)· Much worse Benadryl· Not said St John's wort· Not said curcumin· Not said amino acids· Not said tart cherry· Not said garlic· Not said fish oil· Not saidhemp seed oil· Not saidvitamin C (ascorbic acid)· Not said 5-HTP· Not saidpapaya complex· Not saidGABA· Not said beet root extract· Not said multi vitamin· Not said melatonin· Not said guaifenesin· Not said probiotic and yogurt· Not said

Their words about each treatment

cannabis (THC, CBD and other cannabinoids) · HelpedA fat glob of RSO just melts away my crushing fatigue, joint pain, spinal inflammation, and nerve pain. In context ↗
vaping nicotine · WorseI was vaping nicotine the first 3 years or so of my long COVID. I don't think I'll ever go back. It was definitely flaring me to some extent In context ↗
loratadine (Claritin) · HelpedThe marks on my arms disappeared when I started taking loratadine 2x in the day and 2x at night so I knew this stuff really works. In context ↗
Zyrtec (cetirizine) · HelpedI ran out of loratadine so I bought Zyrtec. Added in Pepcid AC. I think the combo is working. In context ↗
Benadryl · Not saidI take Claritin or Benadryl all day depending on what I have on hand. In context ↗
Pepcid AC (famotidine) · HelpedAlso taking Zyrtec and 2x Pepcid ac 2x a day helps. In context ↗
Celecoxib (Celebrex) · Helped a lotOne measly 200mg pill saves you from any pain after the surgery. It also cuts thru all my fatigue, joint, and muscle pain. In context ↗
ibuprofen · WorseI was maxing out doses of Tylenol and Ibuprofen for a year or so til I got a brutal ulcer. In context ↗
Tylenol (acetaminophen) · WorseAcetaminophen and ibuprofen can't even touch it at max doses for months. In context ↗
aspirin · No changeHell even ibuprofen, Tylenol, and aspirin daily for months didn't do much either. In context ↗
St John's wort · Not saidAlso been taking st John's wart In context ↗
amino acids · Not saidamino blends, amino heavy foods In context ↗
ashwagandha · HelpedI've gotten better effects out of loratadine, ashwaganda, eating bananas, sun exposure and ginseng complex In context ↗
cognitive health gummy (bacopa monnieri and pine bark extract) · HelpedI def feel some mental clarity taken alongside THC d9, cbd, gingko complex, valerian root, Benadryl, and beet powder with nitrates on an empty stomach In context ↗
ginseng complex · HelpedI take ginseng complex now and I feel a lot better In context ↗
beet root extract · Not saidbeet root extract In context ↗
multi vitamin · Not saida multi vitamin In context ↗
valerian root · HelpedMelatonin, magnesium, and valerian root help. In context ↗
melatonin · Not said5mg kinda makes me feel weird. In context ↗
sea salt in water · HelpedI've been adding sea salt to my water. I notice a difference for sure In context ↗
24 hour water fasts · Helpedit went away after a 24 hour water fast and writing a long text to my parents calling them out on a lot of stuff. In context ↗
72 hour water fast · HelpedI decided to do a 72 hour one on a whim that I think influenced a change in gut health. In context ↗
intermittent fasting (two meals a day, 8 hour window) · HelpedI'm to the point now where I just eat two meals a day and it mostly keeps me out of flaring. In context ↗
gluten free diet · HelpedI've been doing mostly gluten free for two months now and I feel like it's helping to be honest. In context ↗
low histamine diet · HelpedI went overboard and quit alcohol, caffeine, nicotine, sweets, eating out, and went mostly low histamine. It worked really well. In context ↗
alcohol · WorseI became alcohol intolerant and was flaring symptoms like crazy. In context ↗
caffeine · WorseI stopped caffeine two years ago. It was flaring me a bit so I decided to cut it out. In context ↗
sugar and sweets · WorseI became intolerant like overnight. Fruit is the only thing that won't wreck me. In context ↗
fermented foods · WorseI started noticing anything fermented will give me brutal PEM so I made some changes. In context ↗
psilocybin mushrooms · Helped a lotI took like a 200mg capsule of 🍄 and it cut thru my pem, brain fog, chronic pain, and fatigue unlike anything I've ever taken before. In context ↗
taurine · HelpedI feel like ginseng complex and taurine are doing a decent job. In context ↗
guaifenesin · Not saidI bought guaifanesin for something totally unrelated and am at day three of kinda relaxed fatigue and spinal/neck stiffness. In context ↗
physical therapy · WorseThey flared me so badly with their graded exercise therapy. It took me a year to fix my shoulder after that mess. In context ↗
pacing · HelpedI pace hard. Like lay in bed all day if I have nothing to do kinda pacing. It helps a lot. In context ↗
light stretching · WorseLightly stretched last night and I hurt today. In context ↗
exercising through symptoms (skateboarding, cardio) · Much worseI fucked myself up skateboarding like 3 miles a day for a year with long COVID. In context ↗
sun exposure · HelpedI've been forcing myself to sit in the sun at least min a day. It really is great. In context ↗
vitamin D3 · HelpedVitamin D3 is a game changer In context ↗
probiotic and yogurt · Not saidAlso been eating unsweetened yogurt with fresh fruit, hemp seed, sun flower seeds, and cereal. A probiotic as well. In context ↗
fentanyl · WorseI took fentanyl post surgery recently and I would never in my right mind take up opiate addiction. In context ↗
heart chakra opening session · HelpedI have done a heart chakra opening session despite not adhering to that practice and it helped immensely. In context ↗
calling out parents / addressing childhood trauma · HelpedMy month long migraine disappeared that day. In context ↗
fiber rich foods (chia seeds, beans) · HelpedMy gut is like 10x better after I started eating raw chia seeds everyday. In context ↗
higher protein intake · HelpedIve noticed protein and feeding my gut properly is helping with pem. In context ↗

Approaches: H1 antihistamines · H2 blockers · Diet · Other drugs and medicines · Pacing · Supplements

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
August 2022	long COVID after an infection; fatigue first, then joint pain, while still skateboarding and workingThe fatigue came first then the debilitating joint pain. In context ↗	Mild
December 2022	four months of pushing through: could barely stand, ankle locked up, sprained joints, had to quit skateboardingBy month 4 of force exerting myself with fatigue and brain fog, I basically couldn't stand overnight. In context ↗	Moderate
January 2024	reinfection around new year worsened MCAS and ME/CFSI got reinfected around new years and definitely am experiencing new symptoms. In context ↗	Moderate
May 2024	stopped alcohol, nicotine, caffeine and sugar and overhauled his diet; felt better but still far from wellI am in a lot better shape but wow do I have a long way to go. In context ↗	Moderate
March 2025	crashed after hernia surgery: spinal and occipital nerve pain, month-long migraineThe surgery definitely triggered me. In context ↗	Moderate
June 2025	24-hour water fast plus calling out his parents ended the month-long migraine; gut gradually improved with fasting and dietWoke up the next day and my month long migraine ended and hasn't come back in a month or so. In context ↗	Moderate	Extended water fasting (3+ days)
October 2026	still largely housebound and not working, but no longer in constant flares and past the worst nerve pain and gut problemsMine isnt as brutal as at the beginning but it's chilled out a bit because I'm not flaring myself 24/7 now. In context ↗	Moderate	Low-histamine diet

Adverse events

Loratadine (Claritin)“It sedated me so heavily that I napped for like 3 hours.” In context ↗ Side effects
“The derealization and anxiety gets unbearable if I forget to consume any cbd at least once a week when using THC.” In context ↗ Mood or psychiatric effects
“the RSO brand I've tried gives me headaches as if I just smoked a bowl of resin.” In context ↗ Side effects
“it didn't do anything other than dry out my sinuses” In context ↗ Side effects
“I had like 8 rips gummies the other day and have been a fucking mess for two days.” In context ↗ Made symptoms worse
Ibuprofen (Advil, Nurofen, Motrin), Paracetamol / acetaminophen (Tylenol, Panadol)“I was maxing out doses of Tylenol and Ibuprofen for a year or so til I got a brutal ulcer.” In context ↗ Gut side effects
Ibuprofen (Advil, Nurofen, Motrin)“I quit the combo. It was wrecking my stomach.” In context ↗ Gut side effects
Celecoxib (Celebrex)“A side effect was that it made using cannabis quite weird feeling.” In context ↗ Side effects
Guaifenesin (Mucinex)“am at day three of kinda relaxed fatigue and spinal/neck stiffness” In context ↗ Side effects
Melatonin“the 5mg stuff has been great but it normally leaves me broken feeling” In context ↗ Side effects
Melatonin“5mg kinda makes me feel weird.” In context ↗ Side effects
Taurine“I do remember having some insane symptoms the day I first took taurine along with a few new supplements.” In context ↗ Made symptoms worse
Taurine“I felt a sense of impending doom and my vision fading out along with feeling faint.” In context ↗ Low blood pressure or fainting
Taurine“woke up with the gnarliest nerve pain at like a 10 going from my shoulder to my fingertips” In context ↗ Nerve pain
Fentanyl“the side effects were already so bad from the fentanyl” In context ↗ Side effects
“I was experiencing rare symptoms from the anesthetic.” In context ↗ Side effects
“My spine flared up the worst it ever has causing brutal pain more intense than the actual surgery.” In context ↗ Nerve pain
“I had the worst chronic migraine that lasted 18 days on top of it all.” In context ↗ Other
“Its destroyed me and flared my symptoms the worst I've ever seen” In context ↗ Made symptoms worse
“the colonoscopy wrecked my gut health” In context ↗ Gut side effects
Physical therapy / physiotherapy“I just did a month and a half of the lightest physical therapy known to man. I have new shoulder pain now” In context ↗ Made symptoms worse
Physical therapy / physiotherapy“and also unleashed some new persistent joint/tendon pains” In context ↗ Made symptoms worse
Physical therapy / physiotherapy“They pushed me to a flare in my shoulder that's been there since February” In context ↗ Made symptoms worse
Physical therapy / physiotherapy“They flared me so badly with their graded exercise therapy.” In context ↗ Made symptoms worse
Extended water fasting (3+ days)“I've noticed fasting and exerting together have the potential to trigger PEM and symptoms unlike anything I've ever experienced.” In context ↗ Made symptoms worse
“I found it a bit symptom triggering. It would hit a little too hard even at 2.5mg.” In context ↗ Made symptoms worse

Symptoms mentioned

Anxiety & low mood Brain fog Breathlessness Flu-like symptoms Gut problems Headaches & migraine Heart symptoms & palpitations Mast cell (MCAS) & allergies Muscle weakness Neuropathy & tingling POTS & dysautonomia Pain & fibromyalgia Post-exertional malaise Sleep problems Temperature regulation Tinnitus Vision problems

Their words about their symptoms

Post-exertional malaiseI have chronic fatigue and get post exertional malaise In context ↗
Brain fogultra fatigued, and brain fog full strength In context ↗
POTS & dysautonomiaI've got me/CFS, pots, mcas, dysbiosis, dysautonomia type symptoms In context ↗
Mast cell (MCAS) & allergiesPretty sure I have me/CFS, mcas, pots, dysautonomia, and dysbiosis. In context ↗
Sleep problemsCan barely sleep 4-6 hours a night. In context ↗
Pain & fibromyalgiaEvery single joint and muscle in my body hurts and aches. In context ↗
Headaches & migraineI get chronic migraines that last weeks at a time. In context ↗
Gut problemsI've always had gut and oral health problems that got worse with long covid In context ↗
BreathlessnessShortness of breath. In context ↗
Heart symptoms & palpitationsMy heart rate gets all crazy In context ↗
Muscle weaknessMy arms got really weak and I couldn't even flap my bed sheets to make my bed. In context ↗
Neuropathy & tinglingI feel nerve pain kinda like carpal tunnel in both arms. In context ↗
Anxiety & low moodThe anxiety feelings come and go. In context ↗
Flu-like symptomsThe fatigue, brain fog, PEM, sore throat, and joint pain never went away In context ↗
Temperature regulationI'm heat intolerant now. In context ↗
Vision problemsI used to get a ton of floaters for a bit. In context ↗
TinnitusTinnitus is incredibly intense. In context ↗

Barely able to stand or walk with ME/CFS, somewhat better with pacing and diet

Ask Miruvor AI

What they tried

What they credit

Also tried

Their path

Adverse events

Symptoms mentioned

Ask Miruvor AI

Similar stories

Long COVID with brain fog, fatigue and POTS, much better after niacin and antihistamines

Bedbound for years with long COVID, now somewhat better but housebound with pacing

Severe long COVID with POTS and brain fog, now recovered after water fasts and diet

Bedbound with long COVID, now much better on low-dose naltrexone and Valtrex

Do you like cookies?

Ask Miruvor AI

What they tried

What they credit

Also tried

Their path

Adverse events

Symptoms mentioned

Ask Miruvor AI

Similar stories

Long COVID with brain fog, fatigue and POTS, much better after niacin and antihistamines

Bedbound for years with long COVID, now somewhat better but housebound with pacing

Severe long COVID with POTS and brain fog, now recovered after water fasts and diet

Bedbound with long COVID, now much better on low-dose naltrexone and Valtrex