Long COVID
Severe → relapsedIll 15 months before improving or writingNeeds ongoing treatment
Bed-bound and unable to work with long COVID; rest helped slightly, then repeated crashes
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 15 months
- Last post
- Nov 2023
In their words
- Condition: Long COVID
I’ve had my Long Covid for almost two years now
In context ↗ - At worst: Severe
After I was infected with Covid a third time my symptoms were all severe. No more moderate. I had to leave work and now I’m completely bed bound
In context ↗ - Now: Relapsed
And then slowly I started to feel better and better, never great, but better. Until about a week or so ago when I badly declined again.
In context ↗ - Began after: COVID
I got Covid in August 2022 and just like you, about a month after it subsided the LC symptoms began.
In context ↗
Read from 39 of their posts and comments; links to the 25 this page draws on
Summary
A 37-year-old woman in California developed long COVID about a month after a COVID infection in August 2022. She kept working until a third infection made every symptom severe; she left work in late March 2023, became bed-bound, used a walker and was unable to work. Rest brought slight improvement by August 2023, but she crashed repeatedly and by late 2023 was still largely bed-bound with constant pain.
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What they tried
What they credit
Also tried
Cannabis (smoking and edibles)· Helped · wore offFreezable eye mask· HelpedEnsure· HelpedWater therapy / water physical therapy· Helped · wore offMeds for blood pressure and low heart rate· Helped · wore offHydrocodone (Norco)· HelpedCompression socks· HelpedGabapentin· HelpedAcceptance practice· HelpedTramadol· No changeTrazodone· No changeAcupuncture· No changeMassage· No changepushing through work and adding activity back· WorseStretching· WorseMassage gun· WorseNutritionist calorie plan (1400 calories a day)· Not saidCPAP machine· Not saidLDN· Not said
Their words about each treatment
- pushing through work and adding activity back · Worse
I pushed and pushed and only hurt my body worse.
In context ↗ - Cannabis (smoking and edibles) · Helped
They aren’t a miracle cure but they do knock some of the intensity of my symptoms down a few notches.
In context ↗ - rest · Helped
Since then, I’ve been able to really rest and try to manage my symptoms and I even think I slightly improved because of it.
In context ↗ - Freezable eye mask · Helped
I have a freezable eye mask that is my best friend.
In context ↗ - Nutritionist calorie plan (1400 calories a day) · Not said
We consulted a nutritionist and I’m slated to eat 1400 calories a day.
In context ↗ - Tramadol · No change
I started with one and now I’m taking 3-4 a day with no effect.
In context ↗ - Stretching · Worse
No amount of stretching helps, in fact it makes it worse.
In context ↗ - Massage gun · Worse
I use to love them and now they seem to over tenderize me.
In context ↗ - Ensure · Helped
I also use Ensure a lot because I get so bad I don’t even care to eat at all. But I’ve found those to be helpful.
In context ↗ - Water therapy / water physical therapy · Helped
Water therapy/activity has really helped me.
In context ↗ - Meds for blood pressure and low heart rate · Helped
Interventions that were effective before, like managing my blood pressure and low heart rate with meds, are no longer effective
In context ↗ - Hydrocodone (Norco) · Helped
It’s been a life saver but it’s meant to be short term.
In context ↗ - Trazodone · No change
My doctors have given me Trazodone but it didn’t even make the slightest of difference.
In context ↗ - Compression socks · Helped
I use some really sexy compression socks that really help with my feet and calf neuropathy pain.
In context ↗ - Gabapentin · Helped
But it does prevent night sweats. If I don’t take it they come back strong.
In context ↗ - Acupuncture · No change
Acupuncture was a joke.
In context ↗ - Massage · No change
I’ve tried water therapy, acupuncture, gabapentin and massage and none work.
In context ↗ - CPAP machine · Not said
I have to now use a CPAP machine and that was never an issue before infection number 3.
In context ↗ - Acceptance practice · Helped
Took some practice but it eventually stuck and I feel much better day to day.
In context ↗ - LDN · Not said
My new physician prescribed me LDN and is doing a good job helping me with symptoms.
In context ↗
Approaches: Radical rest
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 |
|---|---|---|---|
| August 2022 | COVID infection, long COVID symptoms began about a month laterI got Covid in August 2022 and just like you, about a month after it subsided the LC symptoms began.In context ↗ | Mild | |
| March 2023 | third COVID infection; symptoms all severe, had to leave work, bed boundAfter I was infected with Covid a third time my symptoms were all severe. No more moderate.In context ↗ | Severe | |
| 2023-08-21 | slight improvement after being able to restSince then, I’ve been able to really rest and try to manage my symptoms and I even think I slightly improved because of it.In context ↗ | Severe | Radical rest |
| 2023-08-23 | tanked back to her worst level after hoping she was improvingI thought I was on the up and up and then I tanked as bad as I was when this all first began.In context ↗ | Severe | |
| 2023-09-21 | regression with the worst pain so farNow I too am in a regression. And perhaps with the worst pain I’ve ever had so far.In context ↗ | Severe | |
| 2023-11-28 | crashed after a better month; still needing to sit in the darkI got excited and thought I was improving since the past month was pretty good. ... Then I crashed and I was emotionally crushed.In context ↗ | Severe |
Adverse events
- Tramadol“It makes me nauseous too!” In context ↗ Gut side effects
- Stretching“No amount of stretching helps, in fact it makes it worse.” In context ↗ Made symptoms worse
- Massage guns and handheld massagers (Theragun)“I use to love them and now they seem to over tenderize me.” In context ↗ Made symptoms worse
- Cannabis (THC, marijuana)“I can’t do edibles because my intestines hate them.” In context ↗ Gut side effects
- Trazodone (Desyrel)“It just made me awake but drowsier.” In context ↗ Side effects
- Cannabis (THC, marijuana)“But they give me anxiety so I don’t prefer them.” In context ↗ Mood or psychiatric effects
Symptoms mentioned
Anxiety & low moodBrain fogFlu-like symptomsGut problemsHeart symptoms & palpitationsLight & noise sensitivityNeuropathy & tinglingPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
- Pain & fibromyalgia
My aching legs and and hips have been my toughest symptom.
In context ↗ - Brain fog
My brain fog is significantly worse.
In context ↗ - Sleep problems
I never sleep deeply. I wake up every hour or so like you.
In context ↗ - Temperature regulation
I’ve had my Long Covid for almost two years now and my night sweats still happen.
In context ↗ - Gut problems
They work great for my nausea and lack of appetite.
In context ↗ - Flu-like symptoms
They help with my flu like pain tremendously.
In context ↗ - Light & noise sensitivity
I have to take breaks and sit in the dark fairly often.
In context ↗ - Neuropathy & tingling
compression socks that really help with my feet and calf neuropathy pain
In context ↗ - Heart symptoms & palpitations
managing my blood pressure and low heart rate with meds
In context ↗ - Anxiety & low mood
My hate and anger towards this illness created my depression and anxiety.
In context ↗ - Post-exertional malaise
I tried to do a few simple chores like sweeping and mopping and I spent the rest of the day in agony with pain.
In context ↗
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