Long COVID
Moderate → relapsedIll 4 years before improving or writing
Long COVID: breathlessness, brain fog, pelvic pain, off work; time helped then relapsed
- Condition
- Long COVID
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 4 years
- Last post
- Sep 2025
In their words
- Condition: Long COVID
I’ve had long covid for 10 months now.
In context ↗ - At worst: Moderate
Also had to stop working. Watching life go by from my window.
In context ↗ - Now: Relapsed
It gave me the best 8 months of life that I’ve had since catching covid in 2021. ... Recently all my symptoms came back, brain fog, dizziness and pain.
In context ↗ - Began after: COVID
I tested positive on the 18th September 2021.
In context ↗ - Says they never had: Post-exertional malaise
No, i don’t feel as though I have PEM at all.
Read from 123 of their posts and comments; links to the 38 this page draws on
- Jul 2022
- Nov 2021
- Sep 2025
- Jul 2022
- Nov 2021
- Nov 2021
- Apr 2022
- Aug 2022
- Mar 2023
- Dec 2021
- Jan 2022
- Mar 2022
- Mar 2022
- Apr 2022
- Nov 2022
- Dec 2022
- Mar 2023
- Mar 2023
- Mar 2023
- Mar 2023
- Mar 2023
- Oct 2023
- Aug 2022
- Jul 2022
- Aug 2022
- Mar 2023
- Mar 2022
- Oct 2021
- Mar 2022
- Jul 2022
- May 2023
- Sep 2023
- Jan 2025
- Mar 2022
- May 2022
- Mar 2023
- Mar 2023
- Dec 2021
Summary
Pelican 60539 was 36 when Delta COVID in September 2021 led to long COVID with breathlessness, tachycardia, brain fog and severe pelvic pain; she was off work and at her worst watched life go by from her window. Breathing, heart rate and gut symptoms eased over months, which she credited to time, and later low-dose naltrexone helped her mood a little. Later brain fog returned, dizziness appeared, and pelvic pain persisted.
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What they tried
What they credit
Also tried
pelvic floor physiotherapy· Helped · wore offCBD oil· Helpedintermittent fasting· HelpedBotox to masseters· Helpedlow dose naltrexone (LDN)· HelpedFLCCC protocol· No changeantibiotics· No changeD-Mannose powder· No changehydroxychloroquine· No changeMontelukast· No changeotc antihistamine· No changesodium cromoglycate· No changeHistEase· No changeOrthoplex HCL· No changeamitriptyline (Endep)· Worsecold shower· WorseNiacin (flushing)· WorseFamotidine· Worsepelvic floor Botox· WorseCetirizine (Zyrtec)· WorseCOVID vaccination as treatment· WorseNMN Plus· Not saidlow histamine diet· Not saidElmiron (Pentosan)· Not saidB12· Not saidBrain Tap app· Not saidbreathing practice· Not said
Their words about each treatment
- FLCCC protocol · No change
I did it as best as I could at about 3 weeks after infection but I guess it didn’t help
In context ↗ - antibiotics · No change
Antibiotics did nothing obviously.
In context ↗ - D-Mannose powder · No change
I have been taking D - Mannose powder but it hasn't helped at all.
In context ↗ - pelvic floor physiotherapy · Helped
I was doing internal releases with the physio and it was really helping up until 3 weeks ago. All the pain has come back.
In context ↗ - amitriptyline (Endep) · Worse
I have been on it for 5 weeks now and it could just be a coincidence but everything has got worse since I started it.
In context ↗ - CBD oil · Helped
I’ve tried Cbd even with thc. It helps my chronic pelvic pain that I’ve developed since covid but not much more unfortunately.
In context ↗ - cold shower · Worse
I actually tried the cold shower tonight for 40 secs. I definitely need to practice because I couldn’t breathe
In context ↗ - NMN Plus · Not said
I was previously taking NMN Plus, which is the nicotinamide mononucleotide.
In context ↗ - Niacin (flushing) · Worse
I had read most people recommending Niacin the flushing one, so I went out a bought some. I don’t really get that much flushing it just makes me feel sick in the stomach.
In context ↗ - intermittent fasting · Helped
I have however noticed if I don’t snack and give myself a good 4 hours between meals it helps.
In context ↗ - low histamine diet · Not said
I have tried and failed so many times with a low histamine diet.
In context ↗ - Elmiron (Pentosan) · Not said
My doctor has put me on Elmiron (Pentosan)
In context ↗ - hydroxychloroquine · No change
I took it for a few months. It didn’t do anything for me unfortunately. I stopped taking it.
In context ↗ - Montelukast · No change
I took this for about 5 months. ... Ultimately I came off it as I didn’t see any benefits
In context ↗ - Botox to masseters · Helped
could no longer take it anymore and got Botox to my masseters. It helped.
In context ↗ - B12 · Not said
Also on B12 but no other B vitamin.
In context ↗ - Famotidine · Worse
I believe it might be giving me more brain fog, constant urination and some fatigue
In context ↗ - otc antihistamine · No change
Have also tried Montelukast, Claritin, HistEase (supplement) Sodium Cromolyn. Never felt any benefits from these
In context ↗ - HistEase · No change
two supplements one called HistEase and one called Orthoplex HCL ... I did not notice any improvements in that short time.
In context ↗ - Brain Tap app · Not said
I’ve been listening to it for the last week. ... Honestly not sure it’s doing anything at all
In context ↗ - low dose naltrexone (LDN) · Helped
I have moved up to 5mg of LDN and I think it is helping my brain fog a little.
In context ↗ - breathing practice · Not said
I never had a cough at all, and I have been practicing my breathing.
In context ↗ - pelvic floor Botox · Worse
I’m 9 days post pelvic floor Botox and my pain has increased
In context ↗ - Citalopram · Helped a lot
It worked brilliantly for me once I reached 20mg. It gave me the best 8 months of life that I’ve had since catching covid in 2021.
In context ↗ - Cetirizine (Zyrtec) · Worse
After 3 weeks I had to come off everything because my brain fog got so bad.
In context ↗ - COVID vaccination as treatment · Worse
I felt worsening of symptoms for about 48 hours and now I’m back to baseline.
In context ↗
Approaches: SSRIs
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 |
|---|---|---|---|
| 2021-09-18 | COVID-19 (Delta) infection, unvaccinatedI tested positive on the 18th September 2021.In context ↗ | Mild | |
| 2021-10-07 | hospital with chest pain and panic attacks; bilateral viral pneumonia; off workIm tired just walking to the toilet.In context ↗ | Moderate | |
| 2022-03-07 | breathing, fatigue and brain fog eased; about 70% backI do believe at about the 4.5 month mark, I saw an improvement in symptoms.In context ↗ | Mild | |
| 2022-07-28 | long haul symptoms returned at 11 monthsI felt like I was getting better around the 7 month mark but now at 11 months my symptoms are returning.In context ↗ | Mild | |
| 2023-05-23 | mood and energy a little better on LDNI think it’s helping me a little with my mood as I can hold a conversation now without cryingIn context ↗ | Mild | Low-dose naltrexone |
| 2023-09-21 | breathing much better and manageable at two years; pain and brain fog remainIm just a few weeks past 2 years and it’s got so much better. Not perfect, still have my days. Manageable now.In context ↗ | Mild | |
| 2024-10 | citalopram 20 mg gave the best eight months since infectionIt worked brilliantly for me once I reached 20mg. It gave me the best 8 months of life that I’ve had since catching covid in 2021.In context ↗ | Mild | |
| 2025-09-05 | symptoms returned after eight good months on citalopramRecently all my symptoms came back, brain fog, dizziness and pain. I’m devastatedIn context ↗ | Mild |
Adverse events
- Amitriptyline (Elavil)“I have been on it for 5 weeks now and it could just be a coincidence but everything has got worse since I started it.” In context ↗ Made symptoms worse
- Amitriptyline (Elavil)“I started taking Endep 2 weeks ago for a nerve/back issue and my breathing has dramatically worsened.” In context ↗ Made symptoms worse
- Amitriptyline (Elavil)“I was having the worst brain fog, felt disoriented and was having tremors.” In context ↗ Side effects
- Famotidine (Pepcid)“I believe the Famotidine was worsening my brain fog and giving me fatigue.” In context ↗ Made symptoms worse
- Cetirizine (Zyrtec), Cromolyn (Gastrocrom, Nalcrom)“After 3 weeks I had to come off everything because my brain fog got so bad.” In context ↗ Made symptoms worse
- Niacin (vitamin B3)“I don’t really get that much flushing it just makes me feel sick in the stomach.” In context ↗ Gut side effects
- “I’m 9 days post pelvic floor Botox and my pain has increased 😭 didn’t expect that.” In context ↗ Made symptoms worse
- COVID vaccination as treatment“I felt worsening of symptoms for about 48 hours and now I’m back to baseline.” In context ↗ Made symptoms worse
- Cryotherapy and cold exposure“I actually tried the cold shower tonight for 40 secs. I definitely need to practice because I couldn’t breathe 😅” In context ↗ Other
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessFlu-like symptomsGut problemsHeadaches & migraineHeart symptoms & palpitationsLoss of smell or tasteMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgia
Their words about their symptoms
- Brain fog
I can’t think clearly, my memory is not the same.
In context ↗ - Breathlessness
It’s been over 3 years and just the other day I had 2 days of sob.
In context ↗ - Heart symptoms & palpitations
I am still dealing with some tachycardia
In context ↗ - Pain & fibromyalgia
The worst, and most painful, symptom is this weird pelvic pain
In context ↗ - POTS & dysautonomia
I think I have what a lot of people on here have which is dystautonomia.
In context ↗ - Neuropathy & tingling
I have burning hands.
In context ↗ - Muscle weakness
My arms feel like they are cement.
In context ↗ - Gut problems
My gut issues have improved.
In context ↗ - Anxiety & low mood
I fell into a massive depression for about 2 months.
In context ↗ - Loss of smell or taste
I got my taste back after 7 weeks.
In context ↗ - Headaches & migraine
Had all the common symptoms, fever, fatigue, headache.
In context ↗ - Flu-like symptoms
I get like it was just a bad flu.
In context ↗
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