Long COVID
Severe → much betterIll 7 months before improving or writingNeeds ongoing treatment
Bedridden with long COVID, now much better after diet changes and supplements
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 7 months
- Last post
- May 2021
In their words
- Condition: Long COVID
I have also suffered from chronic kidney pain since contracting COVID mid June.
In context ↗ - At worst: Severe
I’ve gone from being bedridden and incapacitated to homeschooling my kid
In context ↗ - Now: Much better
I’ve improved significantly, but it unfortunately I’m not fully recovered yet.
In context ↗ - Began after: COVID
I got sick mid June
Read from 20 of their posts and comments; links to the 16 this page draws on
Summary
Alder 26165 became ill with COVID in mid-June 2020 and developed long COVID with kidney and joint pain, breathlessness, headaches, GI problems and brain fog. After being bedridden, they improved by cutting sugar, gluten, coffee and high-histamine foods, taking supplements and using ice, but relapsed after stress or exertion. By January 2021 they had improved significantly but were not fully recovered; in May 2021 they had mild but persistent back pain from kidney inflammation plus hip, glute, calf and knee pain that was acting up.
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What they tried
What they credit
resting the brain as if after a concussion· Helped a lot · mainCBD oil· Helpedcutting out coffee, sugar and simple carbs (and gluten)· Helped · maincutting out coffee, sugar and simple carbs (and gluten)· Helped · maincutting out coffee, sugar and simple carbs (and gluten)· Helped · maincutting out coffee, sugar and simple carbs (and gluten)· Helped · mainavoiding foods high in histamines· Helpedvitamin D· HelpedB complex / B12· HelpedB complex / B12· Helpedfish oil· Helpedpro and pre biotics· Helpedvitamin C· Helpedvitamin E· Helpedgarlic· Helpedzinc· Helpedmelatonin· HelpedMSM· Helpedapple cider vinegar in water· Helpedtaking it slow· Helpeddry brushing and lymphatic scalp massage· HelpedIF· Helpedpositive thinking· Helped
Also tried
icing the back· Helpedsleeping on her stomach· HelpedPepcid· Helpedgoing to bed early and waking early· HelpedAtivan· Helpedgetting up to walk frequently· Not saidTylenol· Not saidkava tea· Not saidepsom salt baths· Not saidMassage· Not said
Their words about each treatment
- CBD oil · Helped
I doubled my CBD oil dose, cut out coffee, and all sugar and simple carbs
In context ↗ - avoiding foods high in histamines · Helped
I don’t eat sugar, gluten, and try to avoid foods high in histamines.
In context ↗ - vitamin D · Helped
I also take B12 and vitamin D, amongst other supplements, but I feel that those two have a noticeable effect on that “hungover” feeling.
In context ↗ - B complex / B12 · Helped
I take vitamin D, C, E, B complex ... I also take B12 and vitamin D, amongst other supplements, but I feel that those two have a noticeable effect on that “hungover” feeling.
- fish oil · Helped
I take vitamin D, C, E, B complex, fish oil, garlic, pro and pre biotics, zinc, melatonin, and MSM
In context ↗ - garlic · Helped
I also take MSM, fish oil, garlic, and CBD oil.
In context ↗ - MSM · Helped
MSM (really good anti-inflammatory)
In context ↗ - apple cider vinegar in water · Helped
I also drink lots of water with a little bit of ACV added to it.
In context ↗ - taking it slow · Helped
I’m also still taking it slow. If I do to much during the day I’ll start to feel it in my kidneys.
In context ↗ - icing the back · Helped
When I notice pain I immediately ice my back. It is the only thing that offers immediate relief.
In context ↗ - sleeping on her stomach · Helped
I started sleeping on my stomach ... don’t sleep on my back or side, it doesn’t really bother me
- dry brushing and lymphatic scalp massage · Helped
I do find that light lymphatic drainage techniques like dry brushing and lymphatic scalp massage do seem to help.
In context ↗ - getting up to walk frequently · Not said
I started sleeping on my stomach, dry brushing in the morning, and getting up to walk frequently.
In context ↗ - Tylenol · Not said
cooking without having to take any Tylenol
In context ↗ - Pepcid · Helped
I also started taking Pepcid for silent heartburn. It’s been a huge help.
In context ↗ - kava tea · Not said
Oh I also have a cup of kava tea before bed with no issues.
In context ↗ - epsom salt baths · Not said
I dry brush, take epsom salt baths, and make sure I get at least 8 hours of sleep.
In context ↗ - IF · Helped
I’ve been doing IF because I was told it helps regulate blood sugar and reduces inflammation, and when I’m disciplined about it I tend to feel my best (my best for long covid, at least.)
In context ↗ - going to bed early and waking early · Helped
Also going to bed early and waking up early seem to help. If I sleep too late I’ll inevitably end up feeling swollen and tender in my low to mid back
In context ↗ - Ativan · Helped
Ativan helps a little but I only take it on my very worst days.
In context ↗ - resting the brain as if after a concussion · Helped a lot
treat their neurological symptoms like a concussion (no reading, texting, no screen time, no driving, no strenuous activity), so that’s what Ive been doing, and it has been a game changer
In context ↗ - positive thinking · Helped
I am someone who believes in the power of positive thinking and I choose most days to trust that this is a temporary situation. I strongly feel this practice has helped my recovery.
In context ↗ - Massage · Not said
I have had some in the past that have triggered awful inflammation flare ups
In context ↗
Approaches: Alternative therapies · Brain retraining · Diet · Other drugs and medicines · Pacing · 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 |
|---|---|---|---|
| mid June 2020 | COVID-19 infection; bedridden and incapacitatedI’ve gone from being bedridden and incapacitatedIn context ↗ | Severe | |
| 2020-08-20 | anti-inflammatory diet, supplements, ice and activity changesI’ve gone from being bedridden and incapacitated to homeschooling my kidIn context ↗ | Mild | |
| 2020-08-21 | crash after eating candyI couldn’t get out of the bed the next dayIn context ↗ | Severe | |
| 2020-09-16 | relapse after a busy, stressful weekended up relapsing after a really busy, stressful weekIn context ↗ | Moderate | |
| 2020-09-28 | better after relapseI’m feeling better after my last relapse, better than I’ve felt since I got sick actually.In context ↗ | Mild | |
| October 2020 | camping trip away from homeI had an amazing week. I felt so good. Almost normal!In context ↗ | Near normal | |
| October 2020 | returned home and relapsedWhen we got back, life got busy ... I ended up quickly relapsing.In context ↗ | Mild | |
| 2020-10-23 | overall improving with trigger avoidanceI still have bad days, but overall I am improving.In context ↗ | Mild | |
| 2020-12-07 | more good days recentlyI got sick mid June, and even though I still have really bad days, I’ve had more good ones lately.In context ↗ | Mild | |
| 2021-01-31 | rested brain like a concussionit has been a game changerIn context ↗ | Mild | Radical rest |
| 2021-05-05 | persistent pain flareI have mild but persistent back pain from kidney inflammationIn context ↗ | Mild |
Adverse events
- Cutting out sugar (low-sugar diet)“I absentmindedly ate some candy and I swear I couldn’t get out of the bed the next day. My kidney pain went from 3 to 10” In context ↗ Made symptoms worse
- Vitamin C“I tried dosing Vit C like this years ago for issues related to my AI disease, and it made me very sick. 10 grams would send me to the ER.” In context ↗ Made symptoms worse
- Massage“I have had some in the past that have triggered awful inflammation flare ups” In context ↗ Autoimmune or inflammatory flare
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessFlu-like symptomsGut problemsHeadaches & migrainePain & fibromyalgiaPost-exertional malaise
Their words about their symptoms
- Post-exertional malaise
the physical and mental exertion set me back
In context ↗ - Brain fog
I go cross eyed at anything written above a 6th grade level right now.
In context ↗ - Pain & fibromyalgia
I have mild but persistent back pain from kidney inflammation
In context ↗ - Headaches & migraine
SOB, headaches, exhaustion, and GI issues
In context ↗ - Anxiety & low mood
extreme worry and dark thoughts
In context ↗ - Flu-like symptoms
basically just feeling poisoned
In context ↗
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