Barely able to stand with long COVID, now much better with pacing and POTS medication
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 2.5 years
- Last post
- May 2024
In their words
- Condition: Long COVID
Covid landed me in the ICU, now I’m a long hauler.
In context ↗ - At worst: Severe
I started as severe, then gradually dropped levels. I’m now “mild,”
In context ↗ - Now: Much better
I went back to work 6 months ago. It has been a little hard and I have to prioritize rest at night and on the weekends, but I’m working.
In context ↗ - Began after: COVID
Covid landed me in the ICU, now I’m a long hauler.
In context ↗
Read from 30 of their posts and comments; links to the 25 this page draws on
Summary
She was hospitalized with severe Covid in October 2021, spent three days in ICU and two months on oxygen at home, barely able to stand. She had POTS before Covid; Long Covid left her with small fibre neuropathy, PEM and brain fog. Pacing through a long-Covid clinic physiotherapist, POTS medication, LDN, gabapentin and Adderall supported her recovery, though a house move set her back months. By May 2024 she was working again, resting evenings and weekends.
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What they tried
What they credit
Also tried
Their words about each treatment
- fludrocortisone · Helped
I take fludrocortisone for POTS, and in addition to keeping my blood pressure stable and thus my heart rate normal, it also helps some with fatigue.
In context ↗ - propranolol · Helped
I’m also on propranolol, 20 mg 3x per day. If I miss my dose, I notice pretty quickly.
In context ↗ - pacing · Helped
sticking to it is what helped me recover to the point I am at now
In context ↗ - physical therapy at a long Covid clinic · Helped
I did PT at a LH clinic and it was SO helpful.
In context ↗ - LDN · Helped
I take LDN, and so does my 12 year old LH kid. It helps both of us with fatigue.
In context ↗ - Wellbutrin · Helped
Wellbutrin and an empathetic therapist. ... They all play their part, but Wellbutrin helps me the most.
In context ↗ - an empathetic therapist · Helped
Wellbutrin and an empathetic therapist.
In context ↗ - Zyrtec · Helped
tons of Zyrtec and Pepcid, and sometimes Benadryl as well
In context ↗ - Cromolyn · Helped
Zyrtec, Pepcid, Cromolyn, fludrocortisone
In context ↗ - Ketotifen · Not said
My doctor has me on low dose naltrexone and Ketotifen (both compounded)
In context ↗ - metformin · Helped
spirinolactone, metformin, electrolytes, salt pills
In context ↗ - electrolytes and salt pills · Helped
in addition to electrolytes and salt pills
In context ↗ - D · Helped
propranolol, D, melatonin
In context ↗ - melatonin · Helped
propranolol, D, melatonin and more I just can’t remember right now
In context ↗ - it (montelukast) · Not said
I was on it for MCAS pre-Covid.
In context ↗ - Valcyclovir · No change
My doctor tried giving me Valcyclovir, but it didn’t seem to help any LC symptoms.
In context ↗ - Gabapentin · Helped
I couldn’t do this without my POTS meds, Gabapentin, and Adderall.
In context ↗ - 4 different antibiotics at once for Lyme disease · Not said
I was going through Lyme disease treatment on 4 different antibiotics at once
In context ↗ - instant release adderall · Helped
I take instant release adderall. It helps with brain fog and fatigue for me.
In context ↗ - Paxlovid · Helped
The only thing that has helped me is Paxlovid, but only while actively taking it.
In context ↗ - Aleve · Not said
I just camped out in bed, took some Aleve, naps.
In context ↗ - COVID vaccination as treatment · Not said
My second dose of Pfizer was a doozy. Felt like having COVID again for about 24 hours
In context ↗
Approaches: CBT & mindset · H1 antihistamines · H2 blockers · POTS medication · Antihistamines & MCAS · Beta-blockers · Hormones & thyroid · Other antidepressants · Other drugs and medicines · Pacing · Physiotherapy and rehab · 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 |
|---|---|---|
| October 2021 | severe Covid, ICU, then home on 24/7 oxygen, barely able to walkI went home barely able to walk, on 24/7 supplemental oxygen, which I had to stay on for months.In context ↗ | Severe |
| June 2022 | could cook dinner a few times; slow walking plan with a PTIt’s been 7 months for me, and this week I was able to cook dinner a few times.In context ↗ | Severe |
| early 2023 | crashed after family house move and heavy manual labourI set myself back 6 months in my recovery, and spent 2 months barely able to walk to the bathroom.In context ↗ | Severe |
| 2023 | long-Covid clinic physiotherapy and pacing rebuilt normal functionIt really helped me gain a lot of normal function, while also teaching me how to avoid PEM, and the absolute necessity of pacing.In context ↗ | Moderate |
| November 2023 | back to an office job; rated herself mildI started as severe, then gradually dropped levels. I’m now “mild,” and a month ago went back to work at an office jobIn context ↗ | Mild |
| May 2024 | working six months, resting evenings and weekendsI went back to work 6 months ago. It has been a little hard and I have to prioritize rest at night and on the weekends, but I’m working.In context ↗ | Mild |
Adverse events
- COVID vaccination as treatment“My second dose of Pfizer was a doozy. Felt like having COVID again for about 24 hours” In context ↗ Side effects
- COVID vaccination as treatment“For like 48 hours I felt like the first few days of having Covid, but I was thrilled about that because it meant my body was doing it’s thing.” In context ↗ Side effects
- Montelukast / Singulair“When they say it can cause “vivid dreams” what they really mean is a realistic hellscape that you will be staring in every single night.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- POTS & dysautonomia
I’ve had POTS for a few years, well before I got COVID and became a long hauler.
In context ↗ - Mast cell (MCAS) & allergies
I was diagnosed with mast cell activation syndrome a few years before Covid, and all the work I did to calm them was for naught as covid set them on fire.
In context ↗ - Brain fog
I recently started taking meds for my ADHD and the brain fog is gone.
In context ↗ - Post-exertional malaise
while also teaching me how to avoid PEM, and the absolute necessity of pacing
In context ↗ - Heart symptoms & palpitations
propranolol (a beta-blocker for tachycardia)
In context ↗ - Neuropathy & tingling
I take 900mg of Gabapentin 3x per day for small fiber neuropathy
In context ↗ - Breathlessness
on 24/7 supplemental oxygen, which I had to stay on for months
In context ↗ - Muscle weakness
Could barely stand up.
In context ↗ - Anxiety & low mood
I had the same thoughts you are thinking when I was going through Lyme disease treatment on 4 different antibiotics at once, feeling like death would be a relief.
In context ↗
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