Long COVID
Severe → near normalIll 2.5 years before improving or writingNeeds ongoing treatment
Bedridden with long COVID for months, now close to normal with rest and salt
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 2.5 years
- Last post
- Sep 2024
In their words
- Condition: Long COVID
Long Covid was just a bridge to my now permanent health problems.
In context ↗ - At worst: Severe
I was mostly bed bound between medical visits and testing during that time
In context ↗ - Now: Near normal
have slowly worked back to strength training 3x per week which I never thought I’d be able to do again ... I’m able to be pretty active physically now.
- Began after: COVID
I had presumptive covid in Spring 2020. Very mild acute infection
Read from 89 of their posts and comments; links to the 31 this page draws on
Summary
A man in his 40s fell ill after a mild presumed COVID infection in spring 2020 with breathlessness, dizziness on exertion, PEM and crippling brain fog. He collapsed in January 2022 and was bedridden and off work for about three months. Diagnosed with POTS, hypoaldosteronism and later adrenal insufficiency, he credited extreme rest, salt, fludrocortisone and magnesium threonate; his cognition recovered fully, but physically he remained limited.
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What they tried
What they credit
lots of salt / extra sodium· Helped a lotFludrocortisone· Helped a lot · mainMagnesium Threonate· Helped a lot · mainextreme rest· Helpedcreatinine monohydrate· Helpednon-sleep deep rest (NSDR) and meditation· Helpedbreathing exercises· Helpedslowly implementing exercise· Helpedphysical therapy· Helped
Also tried
inhalers and nebulizer treatments· HelpedAshgawanda· Helpedcontrolled limited exposure to cold· Helpedalbuterol· Worsecold medicines, ibuprofen, Mucinex· WorsePrednisone· Not saidpseudoephedrine· Not said
Their words about each treatment
- extreme rest · Helped
Was bedridden for about 3 months and then gradually began improving very little, with just extreme rest
In context ↗ - lots of salt / extra sodium · Helped a lot
That’s why the salt and Fludrocortisone had such a positive impact for me.
In context ↗ - Fludrocortisone · Helped a lot
initial treatment for these included lots of additional salt and Fludrocortisone and led to my biggest physical and cognitive improvement
In context ↗ - creatinine monohydrate · Helped
I also added 5/g creatinine monohydrate per day to help with fluid retention
In context ↗ - Magnesium Threonate · Helped a lot
didn’t really level up until I added magnesium Threonate
In context ↗ - non-sleep deep rest (NSDR) and meditation · Helped
Meditation and a few nonsleep deep rest sessions per day got me through getting back to work
In context ↗ - Prednisone · Not said
I was on for two weeks and then tapered off over a 5 or 6 week period, about 9 months ago
In context ↗ - inhalers and nebulizer treatments · Helped
Tried a few inhalers and am currently nebulizing twice per day plus a steroid inhaler. It helps
In context ↗ - albuterol · Worse
I started out with albuterol but made my heart race too much
In context ↗ - Ashgawanda · Helped
I tried Ashgawanda and it helped a lot as well
In context ↗ - controlled limited exposure to cold · Helped
he told me to try controlled limited exposure to help adjust and that helped increase my cold tolerance
In context ↗ - cold medicines, ibuprofen, Mucinex · Worse
I was having bad reactions to most cold medicines, ibuprofen, and I took a mucinex once and felt like I was going to suffocate
In context ↗ - breathing exercises · Helped
Breathing exercises were very helpful, particularly re-learning to use the diaphragm
In context ↗ - slowly implementing exercise · Helped
I’ve improved to the point that I’m slowly implementing exercise and feeling much better for it
In context ↗ - physical therapy · Helped
Physical therapy also helped a lot. I’m able to be pretty active physically now
In context ↗ - pseudoephedrine · Not said
Later tried pseudoephedrine for sinus problems and had no problem
In context ↗
Approaches: POTS medication · Mind-body practices · Physiotherapy and rehab · Radical rest · 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 | After |
|---|---|---|---|
| Spring 2020 | mild presumed COVID, then lingering breathlessness and dizziness on exertionlingering resurgent respiratory problems with increasing bouts of dizziness/ lightheadedness with exertion, and eventually PEMIn context ↗ | Mild | |
| Spring 2021 | gradual worsening with fatigue, breathing problems and brain fogreally began noticing increasing fatigue, breathing problems, dizziness and brain fog Spring 21’ with ups and downs over that summerIn context ↗ | Mild | |
| late January 2022 | collapsed on the stairs, bedridden and out of work for monthsI collapsed on the stairs and was then out of work for several months due what I now recognize as extreme POTS symptoms, hyponatremia, and hyperkalemiaIn context ↗ | Severe | |
| spring 2022 | slow partial improvement with extreme rest, then a plateauWas bedridden for about 3 months and then gradually began improving very little, with just extreme restIn context ↗ | Severe | Radical rest |
| end of July 2022 | started fludrocortisone and high salt; big boost across the boardPut me on Fludrocortisone, 10g salt/ per day and that helped. ... This gave me a big boost across the board.In context ↗ | Moderate | |
| summer 2022 | added magnesium threonate; brain fog improved noticeablyIn June I also added a Magnesium supplement (Threonate) which gave me a noticeable improvement with the brain fogIn context ↗ | Moderate | Magnesium |
| September 2022 | brain fog fully recovered; working full days with errandsI consider my brain fog to be fully recovered at this point and can work a full day, plus some errands without being completely exhaustedIn context ↗ | Mild | |
| December 2022 | almost full relapse after a rapid temperature dropI experienced an almost full relapse in symptoms despite being really well managed for several weeks when my local weather dropped pretty quicklyIn context ↗ | Moderate | |
| January 2023 | fludrocortisone dose increased to twice daily; felt almost like his old selfMy doc just increased my dosage to .1mg twice per day and it has me feeling almost like my old self.In context ↗ | Mild | |
| August 2023 | started physical therapy and began regaining capacity3 years in and just recently began physical therapy that is helping me regain some capacity.In context ↗ | Mild | |
| October 2023 | cognitive and pulmonary function back to about 100%My cognitive function and pulmonary function are just about back to 100% after right around 3 year mark.In context ↗ | Mild | |
| February 2024 | back to strength training three times a weekhave slowly worked back to strength training 3x per week which I never thought I’d be able to do again.In context ↗ | Mild | |
| September 2024 | pretty active physically, still managing POTS symptomsI’ve come a long way. ... I’m able to be pretty active physically now.In context ↗ | Near normal |
Adverse events
- “At my worst and when very symptomatic I was having bad reactions to most cold medicines, ibuprofen” In context ↗ Side effects
- “I took a mucinex once and felt like I was going to suffocate” In context ↗ Allergic reaction / anaphylaxis
- Corticosteroid pulses“checking my cortisol levels (mine are extremely low). She suspects it’s from Prednisone I was on.” In context ↗ Other
- Albuterol / salbutamol (Ventolin)“I started out with albuterol but made my heart race too much.” In context ↗ Heart rhythm problems
- Pseudoephedrine (Sudafed)“I couldn’t tolerate any caffeine or pseudoephedrine for a few months” In context ↗ Side effects
- Salt, electrolytes and fluids“I’d immediately feel a bit better, but I’d then lose it all through urination, and be even more depleted and dehydrated.” In context ↗ Made symptoms worse
- Cryotherapy and cold exposure“It did seem to lower my heat tolerance in the house though.” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessLight & noise sensitivityMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPost-exertional malaiseTemperature regulation
Their words about their symptoms
- Brain fog
I had several months of debilitating brain fog. Major memory problems, lost ability to visualize, imagine, no inquisitiveness.
In context ↗ - Post-exertional malaise
Physically I still struggle and experience PEM when I push my boundaries too much
In context ↗ - POTS & dysautonomia
I still need to manage the POTS/ Dysautonomia symptoms
In context ↗ - Breathlessness
I use an inhaler and nebulize two times a day and this mostly allows me to exist with minimal SOB
In context ↗ - Muscle weakness
When I was badly off, my legs would just be weak.
In context ↗ - Light & noise sensitivity
I had similar very extreme sound and light sensitivity when I was very bad off.
In context ↗ - Neuropathy & tingling
improvement in the annoying tingling limbs, muscle cramps
In context ↗ - Anxiety & low mood
the thing that really caused me to think the worst (when I could think) was the brain fog
In context ↗ - Temperature regulation
I seem to do worse when exposed to extreme temperatures tho, very cold or hot.
In context ↗
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