Long COVID
Severe → no benefitIll for 3.5 yearsNeeds ongoing treatment
Long COVID, mostly in bed, tried antihistamines and LDN with no benefit
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill for
- 3.5 years
- Last post
- Oct 2025
In their words
- Condition: Long COVID
I’ve had long covid for 3 3 and a half years .
In context ↗ - At worst: Severe
I’ve been mostly on the bed for 6 mths I started some ivabradine which is helping
In context ↗ - Now: No benefit
my health is absolute shit and I have hardly any energy to care for my kid and pets
In context ↗ - Began after: COVID
I got covid maybe a year ago
Read from 117 of their posts and comments; links to the 46 this page draws on
- Sep 2025
- Sep 2025
- Feb 2025
- Nov 2022
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Summary
Prairie 77830 got long COVID in 2022 and kept working physical jobs through exhaustion, PEM, pain, nausea and missed periods. Antihistamines brought back a period and eased nausea; low-dose naltrexone gave immediate relief and, with HRT, her dysautonomia eased. After six months mostly in bed she began ivabradine, midodrine and mestinon plus short bike rides, and was preparing to return to part-time work still limited by coat-hanger pain and tiredness.
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What they tried
Also tried
Benadryl· HelpedFresh grated ginger· HelpedPacing and rest· HelpedADD medication (Adderall, extended release)· HelpedRice in a sock (heat)· HelpedHot baths· HelpedClaritin· HelpedEar massage· HelpedCows milk elimination (almond or soy milk)· HelpedClonidine· HelpedBack and vagus nerve stretches· HelpedLDN· HelpedHRT· HelpedGlandszuk acupressure neck roll pillow· HelpedTENS 7000 unit· HelpedNicotine patch· HelpedMassage· HelpedRecumbent bike and POTS course· HelpedIvabradine· HelpedTherapist· HelpedMidodrine· HelpedAbrocitinib (clinical trial)· No changeTreadmill· WorseIbuprofen· Not saidZyrtec· Not saidBreathing exercises· Not saidPepcid· Not saidEffexor· Not saidValtrex· Not saidSalt tablets and water· Not saidMestinon· Not saidCOVID vaccination as treatment· Not said
Their words about each treatment
- Benadryl · Helped
I started Benadryl here and there after reading this thread and got my period after 9 mths!!!!!!!
In context ↗ - Fresh grated ginger · Helped
Torally cures nausea
In context ↗ - Pacing and rest · Helped
FORCING myself NOT to complete tasks that I would have been able to complete before because I KNOW that it will destroy me
In context ↗ - ADD medication (Adderall, extended release) · Helped
I take add medication which gives me some energy to survive in this time I guess
In context ↗ - Rice in a sock (heat) · Helped
I use rice in a sock tied at the end heat in microwave for two mins on your muscles
In context ↗ - Ibuprofen · Not said
and then reheat and ibuprofen and hot baths
In context ↗ - Hot baths · Helped
used to love my hot baths for long covid muscle tension in the ol place
In context ↗ - Claritin · Helped
I’m now just taking a Claritin every 24 hours and grated ginger for nausea
In context ↗ - Ear massage · Helped
I did some simple ear massage does seem to do something
In context ↗ - Cows milk elimination (almond or soy milk) · Helped
Just eliminated cows milk and switched to almond which is better better better
In context ↗ - Zyrtec · Not said
I started taking Zyrtec but don’t know which ones are most effective
In context ↗ - Clonidine · Helped
I take clonadine .5 times 2 for sleep Thankgod I couldnt function otherwise
In context ↗ - Treadmill · Worse
I immediately noticed a crabbiness and I didnt feel that great ... The next day I was a MESS
In context ↗ - Breathing exercises · Not said
I have been focusing on my breathing In the the nose out thru the mouth
In context ↗ - Pepcid · Not said
I have benadryl and pepcid when i go to sleep at night
In context ↗ - Effexor · Not said
I already take. High dose of Effexor 150 mg
In context ↗ - Back and vagus nerve stretches · Helped
Some vagus nerve stretches to ur head to side and forward on both sides while holding ur head Ifs amazing
In context ↗ - LDN · Helped
I started ldn and immediate symptom relief
In context ↗ - HRT · Helped
I ordered hrt thru Alloy online and ldn thru ageless for pain and nervous system help Still no periods but I do think they both have helped
In context ↗ - Glandszuk acupressure neck roll pillow · Helped
I got the set with pillow and I couldn’t believe the relief from the pillow in my neck and shoulders unbelievable
In context ↗ - TENS 7000 unit · Helped
I find the tens 7000 unit very helpful for my survival
In context ↗ - Nicotine patch · Helped
I just put a 21 mg patch on Last time I used it it helped
In context ↗ - Massage · Helped
I just had a massage and it really made more of a difference than I expected
In context ↗ - Abrocitinib (clinical trial) · No change
I started but wasn’t feeling well so pulled out
In context ↗ - Valtrex · Not said
I’m taking valtrex daily
In context ↗ - Salt tablets and water · Not said
I am having a lot of salt tablets up to 20 a day and alot of water
In context ↗ - Recumbent bike and POTS course · Helped
I got a recumbent bike to do cardio at home as I have pots it’s been helping
In context ↗ - Ivabradine · Helped
I started ivabradine for pots which is helping
In context ↗ - Mestinon · Not said
I just started mestinon..horrible diarreah once so far after two days but Im persevering
In context ↗ - Therapist · Helped
I got a therapist weekly it’s helped
In context ↗ - Midodrine · Helped
I started ivabradine and midodrine helps
In context ↗ - COVID vaccination as treatment · Not said
Think it made me extra exhausted
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 | After |
|---|---|---|---|
| 2022-03 | COVID-19; kept working two manual labour jobs through itI worked 2 manual labor jobs right throughout having covid I was off for 5 days from workIn context ↗ | Mild | |
| 2022-11 | antihistamines brought back her period and eased nauseaI started Benadryl here and there after reading this thread and got my period after 9 mths!!!!!!!In context ↗ | Mild | |
| 2023-02 | exhausted after Pfizer boosterI got the second booster Got Pfizer others were moderna Think it made me extra exhaustedIn context ↗ | Mild | |
| 2023-04 | big crash after 20 minutes on the treadmillSo I tried for the first time in a year to hit the treadmill low impact for twenty minutes which was followed over the 24 hour period with bigtime crash emotional physicalIn context ↗ | Mild | |
| 2023-05 | quit the second job and did betterso quit the second job and doing a lot betterIn context ↗ | Mild | |
| 2023-07 | moved apartments; had to accept new limits and paceI just moved apartments and I am not going to say it well...It was hellIn context ↗ | Mild | |
| 2023-12 | long COVID getting progressively worse while overworkingmy long covid is just getting worse and worseIn context ↗ | Mild | |
| 2024-03 | started LDN with immediate symptom reliefI started ldn and immediate symptom reliefIn context ↗ | Mild | Low-dose naltrexone |
| 2024-06 | dysautonomia much less on LDN and HRTmy dysautonomia was SOOOOO bad I dont have it as much anymore Im taking ldn and hrtIn context ↗ | Mild | Low-dose naltrexone |
| 2025-05 | mostly in bed for six months on medical leaveI've been mostly on the bed for 6 mthsIn context ↗ | Severe | |
| 2025-08 | recumbent bike and salt helpedI got a recumbent bike to do cardio at home as I have pots it’s been helping tho I’m still tired a lotIn context ↗ | Moderate | Everyday exercise and activity |
| 2025-10 | back to part-time food service work on ivabradine and midodrine, still severe coat-hanger painI started ivabradine and midodrine helps.. but the severe coat hanger pain sucks so badlyIn context ↗ | Mild | Ivabradine |
Adverse events
- Diphenhydramine (Benadryl)“although it makes me so tired” In context ↗ Side effects
- Cetirizine (Zyrtec)“it makes me so drowsy” In context ↗ Side effects
- Diphenhydramine (Benadryl)“later was grumpy lol” In context ↗ Mood or psychiatric effects
- COVID vaccination as treatment“Think it made me extra exhausted” In context ↗ Side effects
- Amphetamine salts (Adderall)“Crashed and burned the next day ... Could barely function” In context ↗ Made symptoms worse
- JAK inhibitors (unspecified)“I started but wasn’t feeling well so pulled out” In context ↗ Side effects
- Massage“Massage seems to make it sore too” In context ↗ Made symptoms worse
- Mestinon / pyridostigmine“horrible diarreah once so far after two days” In context ↗ Gut side effects
Symptoms mentioned
Anxiety & low moodBrain fogGut problemsHeadaches & migraineMast cell (MCAS) & allergiesMuscle weaknessPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsVision problems
Their words about their symptoms
- Post-exertional malaise
The reaction to exerting yourself that’s negative
In context ↗ - Brain fog
I just felt brainfogged and mental and thrown off
In context ↗ - POTS & dysautonomia
I got the pots diagnosis from the tilt table test
In context ↗ - Mast cell (MCAS) & allergies
Definitely think the histamine intolerance is huge hey ?
In context ↗ - Sleep problems
I was already taking .5 clonadine two times for sleep
In context ↗ - Pain & fibromyalgia
Worst pain of my life 24 7 just from a virus too weird
In context ↗ - Headaches & migraine
My head feels like it’s going to explode all the time from the tendons at the side
In context ↗ - Gut problems
Severe nausea diarrhea for me
In context ↗ - Muscle weakness
Neck and shoulders awful muscle weakness coat hanger pain from pots
In context ↗ - Anxiety & low mood
I had the worst day today I have had I was suicidal
In context ↗ - Vision problems
half my vision and need glasses Just from covid
In context ↗