Long COVID
Severe → much betterIll 11 months before improving or writingNeeds ongoing treatment
Bedbound with long COVID for 10 months, now much better with pacing and physiotherapy
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 11 months
- Last post
- Sep 2026
In their words
- Condition: Long COVID
I caught covid in November 2024 and developed Long covid around Late December 2024
In context ↗ - At worst: Severe
at my worst i was around under 1000 daily, just got up to pee and shower
In context ↗ - Now: Much better
I think im around 80% recovered ( I still have POTS though which I dont think will ever truly go
In context ↗ - Began after: COVID
I caught covid in November 2024 and developed Long covid around Late December 2024.
In context ↗
Read from 39 of their posts and comments; links to the 23 this page draws on
Summary
A 27-year-old woman developed long COVID in December 2024 following a COVID infection, after earlier EBV post-viral fatigue. Bedbound for 10 months from January 2025 with chest pain, POTS, breathlessness and panic attacks, she became housebound. Physiotherapy, pacing, amitriptyline, lysine and somatic exercises brought slow gains amid month-long crashes. By September 2026 she was 80% recovered, walking 10,000 steps and volunteering, with POTS, breathlessness, fatigue and neuropathy remaining.
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What they tried
What they credit
amitriptyline· Helped · mainH1 Blocker Bilastine (allertine)· HelpedH2 Blocker Famotidine· HelpedCoq10· HelpedMagnesium Hi Zorb / magnesium glycinate· HelpedLysine· HelpedLow acid/ caffeine/ Chocolate/ sugar· HelpedLow acid/ caffeine/ Chocolate/ sugar· HelpedLow acid/ caffeine/ Chocolate/ sugar· HelpedNo gluten· HelpedPhysiotherapy· HelpedPacing· Helped · maingradually increasing activity / daily walks· HelpedThe book the way out by Alan Gordon· Helpedsomatic exercises / brain retraining· HelpedSlinda· HelpedSpironolactone· Helpedtime· Helped
Also tried
Ural Cranberry tablets· Helpedlow histamine diet· Helpedbenefibre and psyllium husk· Helpedsalty water, electrolytes and compression gear· Helpedsalty water, electrolytes and compression gear· Helpeddiaphragm breathing· Helpedsmall dose in the morning (product not named)· Helpedherbs and natural remedies· No changeVit C· No changeVit B· No changeMidodrine· No changePPI's· No changeCreatine· No changeHigh protein diet· No changeLexapro· WorseLow-dose naltrexone· Not said
Their words about each treatment
- herbs and natural remedies · No change
i have tried many herbs and natural remedies that didnt seem ultimately helful
In context ↗ - amitriptyline · Helped
the most useful medications i have had were amitriptyline 25mg for the pain
In context ↗ - H1 Blocker Bilastine (allertine) · Helped
allertine H1 antihistamine ( for allergic type reactions, so shortness of breath, rashes, adrenaline dumps after eating)
In context ↗ - H2 Blocker Famotidine · Helped
famotidine H2 antihistamine ( for gerd/ lpr which i suspect added to my shortness of breath due to my throat being burned at all times + throat pain)
In context ↗ - Lexapro · Worse
But i responded poorly to it and became extremely high energy like manic then very anxious
In context ↗ - Vit C · No change
Steroids, Low dose naltrexone, Lexapro, Vit C, Vit B
In context ↗ - Midodrine · No change
Vit B, Midodrine, PPI's
In context ↗ - PPI's · No change
Midodrine, PPI's, Telfast ( Fexofenadine)
In context ↗ - Creatine · No change
Telfast ( Fexofenadine), Creatine, High protein diet
In context ↗ - High protein diet · No change
Creatine, High protein diet
In context ↗ - Coq10 · Helped
Things that i think have helped
In context ↗ - Magnesium Hi Zorb / magnesium glycinate · Helped
Magnesium Hi Zorb (for the spasms)
In context ↗ - Lysine · Helped
Lysine is the newest one i have started, about a month ago and i noticed a big jump in my daily energy
In context ↗ - Ural Cranberry tablets · Helped
cranberry tablets (unsure but think it helped my bladder pain)
In context ↗ - low histamine diet · Helped
i also found going on a low histamine diet for a month seemed beneficial
In context ↗ - Physiotherapy · Helped
Strangely this seems to have been one of the main things that has pushed my mind and body connection to lower the pain feedback loop
In context ↗ - Pacing · Helped
Extremely slow pacing I think was one of the main things
In context ↗ - gradually increasing activity / daily walks · Helped
slowly increasing activity through pacing (like 5-10 minute walks and waiting every 2nd day to make sure it was safe by checking for crashes)
In context ↗ - The book the way out by Alan Gordon · Helped
The book the way out by Alan Gordon (this helped me reframe how I viewed my symptoms and being less scared which helped to waste less energy for me personally)
In context ↗ - somatic exercises / brain retraining · Helped
The main things that i think pushed the needle most were the amitryptiline, physical therapist, pacing, lysine, and somatic exercises
In context ↗ - benefibre and psyllium husk · Helped
i take benefibre and eat psyllium husk "jelly"
In context ↗ - salty water, electrolytes and compression gear · Helped
salty water and compression gear to take some energy strain off where i could
In context ↗ - diaphragm breathing · Helped
instructing me to do diaphragm breathing every day twice a day for 5 minutes which i strongly recommend
In context ↗ - Slinda · Helped
(Spironolactone and Slinda also seem to help but likely more helpful for the PCOS issues and inflammation caused by that)
In context ↗ - time · Helped
I think it was a mix of time, almost all stressors in my life being gone and weirdly brain retraining
In context ↗ - small dose in the morning (product not named) · Helped
have been taking a small dose in the morning, I find it gives me a good boost of energy like caffeine would but all day
In context ↗ - Low-dose naltrexone · Not said
it interacted with my anxiety and midodrine
In context ↗
Approaches: H1 antihistamines · H2 blockers · Amino acids and carnitine · Brain retraining · Diet · Hormones & thyroid · Pacing · Physiotherapy and rehab · Sex hormones · Supplements · Tricyclic antidepressants
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 |
|---|---|---|
| late December 2024 | long covid symptoms began after covid infectionI caught covid in November 2024 and developed Long covid around Late December 2024.In context ↗ | Moderate |
| January 2025 | bedbound with chest pain, breathlessness, vertigo and panicI became pretty much bed bound and was unable to cook, move much or clean aside from very small tasks which would cause pemIn context ↗ | Severe |
| July 2025 | able to be housebound, short walks and drivesbeginning to be housebound from roughly July onward, moving into the occasional drive to get things from nearby shops or a short walkIn context ↗ | Moderate |
| August 2025 | month-long crash after overdoing activityso August, October and December all were month long crashesIn context ↗ | Severe |
| October 2025 | month-long crash back to bed boundmy pem would drop me from almost housebound back to bed bound for about a month at a timeIn context ↗ | Severe |
| December 2025 | month-long crashhaving about 1month long crashes in bursts in betweenIn context ↗ | Severe |
| January 2026 | major PEM episode lasting about two weeksthe last major PEM episode I had was around January, which made me ill for maybe 2 weeksIn context ↗ | Moderate |
| February 2026 | able to sit at desk, socialise, drive short bursts, cook and cleanid say im maybe 50% better after what i consider 1 yr 2 months of lcIn context ↗ | Moderate |
| May 2026 | walking about 10,000 steps a day with no severe PEMi am a lot closer maybe around 70%In context ↗ | Mild |
| September 2026 | not housebound, walking 10k steps, driving, weekly volunteer shift, heavy garden workI think im around 80% recoveredIn context ↗ | Mild |
Adverse events
- Escitalopram (Lexapro)“i responded poorly to it and became extremely high energy like manic then very anxious” In context ↗ Mood or psychiatric effects
- Amitriptyline (Elavil)“fatigue (but less severe its more like just being sleepy, maybe the amitriptyline)” In context ↗ Side effects
- Low-dose naltrexone“it interacted with my anxiety and midodrine” In context ↗ Mood or psychiatric effects
- Midodrine“weird jolts in my head which was the midodrine” In context ↗ Side effects
- Low-dose naltrexone“It unfortunately increased my anxiety and gave me strange head tingles and a wired but tired feeling, so worsened insomnia.” In context ↗ Mood or psychiatric effects
- “It also made my pots worse, some people can tolerate it and it helps them but i cant have it anymore” In context ↗ Made symptoms worse
- Spironolactone“spironolactone ( coz its a diuretic I had to counter it messing with ecectrolyte levels and potassium levels” In context ↗ Refeeding or deficiency problems
- Amitriptyline (Elavil)“amitryptiline ( due to temporarily increased fatigue, i was sleeping almost all day after starting)” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessGut problemsHair lossHeadaches & migraineHeart symptoms & palpitationsMast cell (MCAS) & allergiesMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulationVision problems
Their words about their symptoms
- Post-exertional malaise
there have been days after I do a lot of movement where I feel my body is worn out and rest for a day or two
In context ↗ - Brain fog
brain fog is gone for the most part I just have some minor issues with studying and using maths
In context ↗ - POTS & dysautonomia
I still have POTS though which I dont think will ever truly go
In context ↗ - Mast cell (MCAS) & allergies
allergic type reactions, so shortness of breath, rashes, adrenaline dumps after eating
In context ↗ - Sleep problems
thats also why i had amitryptiline was for insomnia
In context ↗ - Pain & fibromyalgia
I still get SOB and fatigue + muscle spasms/ pain
In context ↗ - Headaches & migraine
Migraine/ Headache
In context ↗ - Gut problems
famotidine H2 antihistamine ( for gerd/ lpr
In context ↗ - Breathlessness
I still get SOB
In context ↗ - Heart symptoms & palpitations
i had palpatations early on but they have since stopped
In context ↗ - Muscle weakness
having been bedbound so long my muscles had become weak or shorter/ longer in places they shouldnt have
In context ↗ - Neuropathy & tingling
I still get SOB and fatigue + muscle spasms/ pain + peripheral neuropathy
In context ↗ - Anxiety & low mood
Malaise/ Severe anxiety + daily panic attacks
In context ↗ - Temperature regulation
Heat/ Cold Intolerance
In context ↗
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