Immobile and in daily pain with long COVID, much better with low-dose naltrexone
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- Dec 2024
In their words
- Condition: Long COVID
As my PCP explained to me later, LC had left my body producing blood that was stickier than normal
In context ↗ - At worst: Severe
A year ago, I was immobile, unhappy, and quite despondent.
In context ↗ - Now: Much better
Today, with LDN and a mobility aid, I'm living something closer to a normal life, happy, and looking forward to each morning. Granted, there are still bad days where the aches and pains overwhelm me, but they are much less frequent than before
In context ↗
Read from 5 of their posts and comments; links to the 4 this page draws on
Summary
A long COVID patient described being immobile and in daily pain a year before late 2024; before LDN, bad days meant reclining the entire day. In mid-2024 a massive bilateral pulmonary embolism put them in intensive care and on lifelong blood thinners. Low-dose naltrexone, titrated over several months from 1.5 mg, greatly reduced pain and fatigue; they could shop again, using a power wheelchair for larger stores. Oral NAD+ at 1000 mg daily did nothing.
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What they tried
What they credit
Also tried
Their words about each treatment
- blood thinners · Not said
I received blood thinning treatment and they watched for other clots that might migrate.
In context ↗ - ibuprofen (paracetamol) · Helped
On the bad days or when I overdo things, it will still be a bad day, but with NSAIDs on board, it's at least survivable.
In context ↗ - LDN · Helped a lot
When I got to the correct titration for me, the pain was significantly reduced, and my baseline/constant fatigue wasn't as bad.
In context ↗ - oral NAD+ · No change
The problem is that at 1000mg a day, I'm noticing no impact at all.
In context ↗ - Travel Buggy City 2.0 power wheelchair · Helped
being able to get back into the world with my chair, my spirits have improved exponentially
In context ↗
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, in the order they describe; they don’t give enough times to place each step. 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 |
|---|---|---|---|
| about a year before November 2024 | immobile, sedentary and despondent from daily painA year ago, I was immobile, unhappy, and quite despondent.In context ↗ | Severe | |
| by July 2024 | massive bilateral pulmonary embolism, a week in intensive careI ended up in intensive care for a week after thatIn context ↗ | Severe | |
| 2024-11-20 | able to shop in smaller stores again, power wheelchair for larger onesI have been able to go grocery shopping in smaller stores again, pushing a cart, without feeling like I have pushed myself too far.In context ↗ | Mild | Low-dose naltrexone |
| 2024-12-18 | still on LDN, which continues to help; added oral NAD+ with no effectWhen I got to the correct titration for me, the pain was significantly reduced, and my baseline/constant fatigue wasn't as bad.In context ↗ | Mild |
Adverse events
- “I ended up in intensive care for a week after that, as my kidneys recovered from the shock of all the contrast medium they had to use” In context ↗ Liver or kidney problems
- Low-dose naltrexone“The only strange thing I have noticed with the LDN is that I really don't feel the effects of alcohol or edibles anymore ... Even modest quantities of alcohol (1-2 beers) will leave me quite dizzy and unstable” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I'm hoping to lessen the fatigue and PEM
In context ↗ - Pain & fibromyalgia
there are still bad days where the aches and pains overwhelm me
In context ↗ - Sleep problems
My sleep is difficult enough already.
In context ↗ - Breathlessness
I had trouble breathing at all
In context ↗ - POTS & dysautonomia
would gray out if I stood
In context ↗ - Anxiety & low mood
I was immobile, unhappy, and quite despondent
In context ↗
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