Long COVID unable to sit up all day, somewhat better with pacing and MCAS treatment

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

In their words

Condition: Long COVIDI have ME/CFS type Long Covid, also POTS and MCAS from LC. In context ↗
At worst: ModerateI’ve had ME/CFS type Long Covid since Novemberish 2022 and have been mostly housebound with periods of being bedbound for a week or two at a time. In context ↗
Now: Somewhat betterI have definitely improved, but also gotten much better at symptom management. If I had to estimate, I’d say overall about 15-20% “recovered”. In context ↗
Began after: COVIDMy last infection was September 2022 and LC started in October. In context ↗
Says they never had: Gut problemsI also have no digestive symptoms

Read from 268 of their posts and comments; links to the 69 this page draws on

Summary

Glacier 65919 developed ME/CFS-type long COVID after a September 2022 infection and was largely unable to sit up or work all day at worst. Pacing, rest, time off work, better sleep, antihistamines and MCAS treatment brought slow gains amid crashes and setbacks. They paid $3,000 for 36 hyperbaric oxygen sessions that may have helped restore their smell and taste but were not worth the money. Around 18 months in they were still working reduced hours with rests.

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What they tried

What they credit

pacing· Helped a lot · main Zyrtec (cetirizine)· Helped a lot · main time off work on medical leave, with a caregiver· Helped a lot surgery under general anesthesia· Helped a lot lymphatic drainage massage· Helped acupuncture· Helped slow yoga and stretching· Helped daily walks and paced activity· Helped melatonin· Helped herbal blend from acupuncturist (aconite, ginger, licorice)· Helped herbal blend from acupuncturist (aconite, ginger, licorice)· Helped herbal blend from acupuncturist (aconite, ginger, licorice)· Helped low histamine diet· Helped quercetin· Helped prescription vitamin D2 and sun exposure· Helped NAC· Helped electrolytes (LMNT) and compression· Helped electrolytes (LMNT) and compression· Helped midodrine· Helped cromolyn· Helped curcumin / turmeric· Helped fermented foods (kimchi, miso, kombucha)· Helped Visible app and armband· Helped LDN· Helped glycine· Helped Mitocore· Helped breathwork· Helped

Also tried

sleep and sleep hygiene· Helpedcoconut water blended with frozen baby spinach· HelpedCBD+CBN+CBG tincture nightly· Helpedcold compresses· Helped Benadryl· Helped L-citrulline malate· HelpedCBD+CBG gummies· HelpedCoQ10· Helped fish oil· Helped HBOT· Helped famotidine (Pepcid)· Helped sauna· HelpedTHC tincture and cannabis gummies· Helpedcutting out sugar and processed grains· HelpedTMG betaine· Helped increased protein intake· Helped creatine· Helped red light panel· Helped CBD· No change anti-inflammatory diet and strict protocol· No change caffeine elimination· No change probiotics (ProBiota Histamine X, Seed DS-1)· No change Paxlovid (Yale PAXLC trial)· No change topical ivermectin (Soolantra)· No changenarcotic painkillers· No changeoxaloacetate (Benagene)· No change stinging nettle infusion· No changesmell therapy with essential oils· No changemontelukast (Singulair)· Worse Valtrex· Worse Celebrex (celecoxib)· Worse B12· Not said NAD+ patches· Not said

Their words about each treatment

sleep and sleep hygiene · Helped8-12 hours of sleep a day (or at least laying in bed trying to sleep) In context ↗
coconut water blended with frozen baby spinach · Helpeddrinking coconut water blended with frozen baby spinach every day In context ↗
lymphatic drainage massage · Helpedlymphatic drainage massage as often as I can afford it (every 3-4 weeks) In context ↗
acupuncture · HelpedAcupuncture and an herbal blend from my acupuncturist did seem to help. In context ↗
slow yoga and stretching · Helped2-15 min slow yoga poses (really just stretching and trying to move my limbs and spine through their range of motion) 2-5x week In context ↗
daily walks and paced activity · Helpeddaily walks (.25 miles to 3 miles) In context ↗
pacing · Helped a lotPacing and 6 weeks off work with people staying with me caring for me. In context ↗
Zyrtec (cetirizine) · Helped a lotI have been taking Zyrtec daily for almost a month now and it (or something) has made a huge difference. In context ↗
CBD · No changeI had not seen a difference with just CBD for a couple months In context ↗
melatonin · HelpedUsually I have good luck with a gummy that is 5mg melatonin + 5mg CBN + 10mg CBD. In context ↗
CBD+CBN+CBG tincture nightly · HelpedI have been taking a CBD+CBN+CBG tincture nightly for about 6 months In context ↗
cold compresses · HelpedCold compresses help that feeling and possibly contribute to shorter crashes. In context ↗
herbal blend from acupuncturist (aconite, ginger, licorice) · HelpedI did experience a boost in energy for 10 days (my only 10 good days in the last 7 months) In context ↗
anti-inflammatory diet and strict protocol · No changeSuper strict diets didn’t work for me. I tried low histamine and anti-inflammatory. In context ↗
low histamine diet · Helpedlow histamine diet for 1 month then slowly adding some foods back in In context ↗
quercetin · HelpedQuercetin 1000-2000mg In context ↗
Benadryl · HelpedBenadryl also helps me sleep when I’m desperate. In context ↗
L-citrulline malate · HelpedI started L-citrulline Malate about a month ago and it seems to shorten PEM period and decrease PEM intensity a little, but too early to say. In context ↗
B12 · Not saidI started B12 less than a week ago and have had some of my best days the past few days, but way too early to tell on that one. In context ↗
CBD+CBG gummies · Helpedthe combo with CBG seems to turn down the volume on muscle aches and joint pain In context ↗
prescription vitamin D2 and sun exposure · Helpedthe supplements are just not working, but the sun exposure is In context ↗
caffeine elimination · No changeI stopped caffeine for 6 weeks and saw no difference. In context ↗
CoQ10 · HelpedI just found out from a doctor at a Long Covid clinic that I should be taking 400mg of CoQ10 instead of 100mg daily. In context ↗
NAC · HelpedI believe NAC + glycine has helped my brain fog significantly. In context ↗
fish oil · HelpedFish Oil 1200-2400mg/day In context ↗
time off work on medical leave, with a caregiver · Helped a lot#1 MOST helpful thing has been taking time completely off work to focus on treatment, seeing doctors, rest, pacing exercises. In context ↗
electrolytes (LMNT) and compression · Helpedtraded out the coconut water for electrolyte drink mixes with a target of 3000mg sodium/day In context ↗
HBOT · HelpedI did 36 sessions and had some improvement, mostly in regaining smell and taste and improved temperature regulation. In context ↗
midodrine · HelpedI’d rank: Cromolyn sodium, midodrine, melatonin, and curcumin In context ↗
cromolyn · HelpedI just started cromolyn and don’t have these symptoms In context ↗
famotidine (Pepcid) · HelpedI take 40mg a day as part of treatment for (long covid induced) MCAS. In context ↗
montelukast (Singulair) · WorseIt made me depression worse In context ↗
curcumin / turmeric · HelpedTurmeric surprisingly. I’ve had an noticeable increase in pain twice when I’ve gone off it and twice it has abated when going back on In context ↗
probiotics (ProBiota Histamine X, Seed DS-1) · No changeI took ProBiota Histamine X when I took them, but I stopped because they didn’t seem to do much if anything for me. In context ↗
fermented foods (kimchi, miso, kombucha) · Helpedonce the MCAS was under control and I started being able to eat fermented foods again (kimchi, miso, kombucha mostly) I felt some improvement In context ↗
Paxlovid (Yale PAXLC trial) · No changeI participated in the Yale PAXLC study which was a 15 day course (I was in the group that got the real drug). It had no effect on my Long Covid. In context ↗
sauna · HelpedIt got rid of my chills from PEM. In context ↗
Visible app and armband · HelpedThe Visible armband has really helped me learn to pace In context ↗
LDN · HelpedIt definitely helps reduce brain fog and PEM severity and duration. In context ↗
topical ivermectin (Soolantra) · No changeI have been prescribed topical (Soolantra) for rosacea (from LC-induced MCAS). It has done nothing for me. In context ↗
glycine · HelpedI started taking NAC and Glycine together on an empty stomach first thing in the morning. In context ↗
NAD+ patches · Not saidI do feel an energy boost for 2-3 days, then usually one lower energy day, then back to baseline. In context ↗
surgery under general anesthesia · Helped a lotI had surgery last week and was under general anesthesia for about 2.5 hours. In context ↗
narcotic painkillers · No changeThe narcotics were great for the surgery pain, but did not help the Long Covid pain. In context ↗
THC tincture and cannabis gummies · HelpedIt helps me immensely with muscle pain and muscle tension, but in small doses (1.5-2.5 mg THC). In context ↗
cutting out sugar and processed grains · HelpedCutting out all sugar and processed grains has helped though. In context ↗
TMG betaine · Helpednow I take TMG Betaine on the day I wear the patch and the day after. I don’t feel worse after anymore. In context ↗
increased protein intake · HelpedI’ve increased protein which has lessened the crashes after eating In context ↗
creatine · HelpedI think I have a little more muscular exertion capacity with creatine than without In context ↗
Mitocore · HelpedI also think Mitocore is helping, but you can never be sure with supplements. In context ↗
oxaloacetate (Benagene) · No changeI tried one Benagene capsule per day (half what the bottle says is a dose) and it didn’t help. In context ↗
red light panel · HelpedI think it’s helped with rosacea and surgical scar healing. In context ↗
Valtrex · WorseI stopped after 8 weeks because there was no change in my tests and I still felt worse. In context ↗
Celebrex (celecoxib) · Worse2 months on Celebrex and Valtrex did nothing for me. If anything I felt worse on them. In context ↗
stinging nettle infusion · No changeI feel like it might help with inflammation, but it hasn’t made a noticeable difference. In context ↗
smell therapy with essential oils · No changeI did the same smell therapy with essential oils for a while which did not seem to help. In context ↗
breathwork · HelpedI started with 4-2-8 (no hold after the exhale) and worked my way up to 4-4-6. In context ↗

Approaches: H1 antihistamines · POTS medication · Alternative therapies · Amino acids and carnitine · Antihistamines & MCAS · Diet · Exercise and activity · Mind-body practices · Pacing · Radical rest · Supplements · Surgery & structural

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
October 2022	Long COVID began after a September 2022 infection; first six weeks barely able to do anythingMy last infection was September 2022 and LC started in October. In context ↗
November 2022	some improvement after six weeks of doing nothing; short daily walks, yoga, massage, acupunctureIt has improved considerably (2 1/2 months post-COVID), but really only after the first 6 weeks of just not being able to do anything. In context ↗
January–April 2023	lowest point, months 4-7 were hardest; mostly housebound with bedbound spellsI think months 4-7 were the hardest for me so far. In context ↗
June 2023	new baseline after starting Zyrtec, then low histamine diet and quercetinThe next day I felt better than I had in a long time. In context ↗
August 2023	crashed after 8 really good days despite staying in her exertion zoneI crashed, not too hard, but I’m back to feeling like I’m swimming in wet cement with every step. In context ↗
September 2023	one outing a day only: 30 min walk with hills or 60 min flatAfter a year, I can walk for about 30 minutes with some elevation changes, 60 minutes completely flat In context ↗
January 2024	return to work 3 hours a week plus a 6-hour round trip to doctors put her below baseline for two weeksI went below my baseline for a couple weeks after those two changes In context ↗
April 2024	sudden improvement with no treatment change, lasting 3½ weeksI had a sudden and significant improvement in some symptoms that was sustained for 3 ½ weeks. In context ↗
December 2024	felt much better and slept better for weeks after surgery, with a friend caring for herI woke up feeling really well rested and in less pain than I’ve had since I got sick. In context ↗	Other surgery (adrenal, lung, venoplasty)
June 2025	best sleep of her life and more energy after the CoRE clinic workup and a low-dose muscle relaxerThe increased sleep quality has led to significantly increased energy levels and greater tolerance for exertion. In context ↗
June 2025	PEM after ramping activity up to 5% of pre-illness capacityI got up to 2 1/2 weeks at 5% and then got PEM. In context ↗
July 2025	crash for a few days after a cold or other acute illness, back to baseline within weeksI got a cold or some acute (non-Covid) illness that caused a crash for a few days and then was back to baseline in a couple weeks. In context ↗
December 2025	stairs, standing showers, cooking and 40-minute flat dog walks without PEM; cannot hike or danceI can walk my dogs for 40 min on flat ground. In context ↗
October 2026	slow upward trend, most of the gain from pacing and symptom managementOverall, I’d put myself at around 2-2.5, but 80% of that is due to pacing and symptom management maybe 20% actual improvement. In context ↗

Adverse events

Cromolyn (Gastrocrom, Nalcrom)“I have noticed stomach cramps twice after taking it, but I was using fridge-cold water to dilute it.” In context ↗ Gut side effects
Paxlovid / nirmatrelvir“So far (I’m on day 4), it also waxes and wanes with how long it’s been since my dose. Peak nastiness is at 1-3 hours after each dose.” In context ↗ Side effects
Everyday exercise and activity“This week I tried, at the advice of a doctor, letting my heart rate go up to 140 and I’ve had a rough few days.” In context ↗ Made symptoms worse
Hyperbaric oxygen (HBOT)“I've had more headaches since I started the sessions, but they are mild and not sure if there is a connection.” In context ↗ Side effects
Hyperbaric oxygen (HBOT)“If I don't eat a big meal before the session, it makes me feel extremely sick.” In context ↗ Side effects
Low-dose naltrexone“The first few days on it, I had mild headaches. Other than crazy dreams that I can’t lucid dream myself out of” In context ↗ Side effects
Hyperbaric oxygen (HBOT)“I ate immediately before one and I almost puked in there.” In context ↗ Gut side effects
NAD+ boosters (NMN, nicotinamide riboside, NADH, ATP)“The first couple times, I felt worse the day after, but now I take TMG Betaine on the day I wear the patch and the day after. I don’t feel worse after anymore.” In context ↗ Made symptoms worse
Montelukast / Singulair“Yes, it worsened my depression almost instantly to a horrifying degree. I stopped it after 5 days.” In context ↗ Mood or psychiatric effects
Everyday exercise and activity“I got up to 2 1/2 weeks at 5% and then got PEM.” In context ↗ Made symptoms worse
Valtrex / valacyclovir“I’ve had no improvement on them, actually feeling much worse energy wise and muscle fatigue wise, but could be the EBV not the medication.” In context ↗ Made symptoms worse

Symptoms mentioned

Anxiety & low mood Brain fog Flu-like symptoms Hair loss Headaches & migraine Loss of smell or taste Mast cell (MCAS) & allergies Muscle weakness POTS & dysautonomia Pain & fibromyalgia Post-exertional malaise Sleep problems Temperature regulation Vision problems

Their words about their symptoms

Post-exertional malaiseI’ve experienced PEM the whole time. In context ↗
Brain fogsevere cognitive issues In context ↗
POTS & dysautonomiaI also have POTS In context ↗
Mast cell (MCAS) & allergiesI’m not cured, but my MCAS is pretty well managed. In context ↗
Sleep problemstrouble staying asleep In context ↗
Pain & fibromyalgiamuscle and joint pain In context ↗
Headaches & migraineNow I would say out of every month, I have 1 severe headache or migraine day and maybe 2-3 milder headache days. In context ↗
Muscle weaknessstill have muscle weakness, but I don’t feel embedded in a cement block In context ↗
Anxiety & low moodNow I just have garden variety depression on and off. In context ↗
Flu-like symptomsa decrease in the intensity of the constant flu-like feeling In context ↗
Loss of smell or tasteMy sense of smell is finally back to 100% (I think) and taste is probably 85%. In context ↗
Temperature regulationmy HR and temperature regulation are all over the map even when I feel ok In context ↗
Hair lossI’ve had a lot of thinning/shedding. In context ↗

Long COVID unable to sit up all day, somewhat better with pacing and MCAS treatment

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What they tried

What they credit

Also tried

Their path

Adverse events

Symptoms mentioned

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