Long COVID so severe they relearned speaking and walking, much better with LDN and pacing
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 4 years
- Last post
- Aug 2025
In their words
- Condition: Long COVID
something I struggled with severely during the early stages of LC recovery
In context ↗ - At worst: Severe
I had to learn how to walk again.
In context ↗ - Now: Much better
I’ve been able to gain back some of my former strength.
In context ↗ - Began after: COVID
severe TMJ symptoms since LC that have gradually tapered off and improved.
In context ↗
Read from 26 of their posts and comments; links to the 18 this page draws on
Summary
Vale 90907 developed long COVID with severe brain fog, fatigue, pain, palpitations, anxiety and muscle weakness, becoming so ill they had to relearn speaking and walking. After over three years they improved with low-dose naltrexone, tart cherry juice, exercise, diet and pacing, but still had twitching, cramping, muscle atrophy and slight brain fog. LDN caused flu-like symptoms and titration flares, and overdoing activity left them wiped.
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What they tried
What they credit
Also tried
Their words about each treatment
- cutting many foods out of my diet · Worse
I made the mistake of cutting TOO MANY things out of my diet, including many forms of meat and protein because I was attempting to curb inflammation.
In context ↗ - reintroducing meat and more protein · Helped
I felt much better reintroducing different forms of meat and more protein BACK into my diet, just in moderation.
In context ↗ - fitted nightguard · Helped
What helped me was getting a fitted nightgaurd and routine relaxation of the muscles in and around the face and neck, especially the masseter.
In context ↗ - quitting drinking, smoking and caffeine · Helped
I also was able to make other big, necessary changes like quitting drinking, smoking, caffeine, and other question life habits
In context ↗ - exercise / the gym · Helped
It has taken me since January of this year to build back up to about 5 strict form pull-ups.
In context ↗ - tart cherry juice · Helped a lot
tart cherry juice has helped tremendously with my brain fog and neuromuscular discomfort caused by fibromyalgia
In context ↗ - LDN (low-dose naltrexone) · Helped a lot
once acclimated it was nothing short of life changing
In context ↗ - coffee and tea · Helped
I’m back to the real stuff and it’s been extremely beneficial for lifting the veil of fog
In context ↗ - curcumin (turmeric with black pepper) · Helped
I can attest to the effectiveness of curcumin, I get it daily by adding turmeric and black pepper to food
In context ↗ - hemp balm · Helped
Magnesium and hemp balms both seem to calm the muscles to some degree
In context ↗ - magnesium and potassium (electrolytes) · Helped
Magnesium and potassium, electrolytes in general really, have been huge in helping with the twitching intensity.
In context ↗ - pacing · Helped a lot
Pacing, so far at least, has made a huge difference.
In context ↗ - yoga · Helped
Over time I’ve noticed improvement through things like magnesium supplementation, yoga, and doing self myofascial release in and around the abdominal region.
In context ↗ - self-myofascial release and trigger point release devices · Helped
I use some pain management tools daily to help with pain in all the described areas to some success.
In context ↗ - meditation · Helped
For me this has been the result of years of consistent practice, meditation
In context ↗
Approaches: Exercise and activity · Mind-body practices · Pacing
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. 1 step has no time and sits in story order between the steps around it. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| onset | Long COVID onset with severe symptomssevere TMJ symptoms since LC that have gradually tapered off and improved.In context ↗ | Severe | |
| — | Rock bottom; had to relearn speaking, walking, writing and thinkingI had to learn how to speak again. I had to learn how to walk again. How to write. I had to learn how to think again.In context ↗ | Severe | |
| 2024-11-22 | Tart cherry juice and LDN improved brain fog, sleep and fibromyalgia paintart cherry juice has helped tremendously with my brain fog and neuromuscular discomfort caused by fibromyalgia.In context ↗ | Mild | Low-dose naltrexone |
| 2025-06-25 | Persistent twitching, cramping and muscle wasting despite exercise; strength decliningAs hard as I try to exercise and maintain functional strength I just keep getting weaker and weaker it seems.In context ↗ | Mild | |
| 2025-08-23 | Regained some strength with exercise but still has twitching, cramping and slight brain fogI’ve been able to gain back some of my former strength. It has taken me since January of this year to build back up to about 5 strict form pull-ups.In context ↗ | Mild |
Adverse events
- Elimination diets (other)“I made the mistake of cutting TOO MANY things out of my diet, including many forms of meat and protein because I was attempting to curb inflammation. ... I ended up working counterproductively and hurt my growth and recovery.” In context ↗ Made symptoms worse
- Low-dose naltrexone“when I started taking a measly .5mg my body retaliated and fought the dose, leaving me with intense flu symptoms and fatigue” In context ↗ Side effects
- Low-dose naltrexone“every time I titrate up I have a slight regression for a few days before the benefits arrive.” In context ↗ Made symptoms worse
- Low-dose naltrexone“Much worse. I had full on panic attacks daily. I’d say a month or more before it really started to level out” In context ↗ Mood or psychiatric effects
- Low-dose naltrexone“Any time you bump up, especially at the lower doses, you will have flu-like symptoms and an increase in symptoms and severity before settling back down” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
then the next thing I know I’m absolutely wiped
In context ↗ - Brain fog
additional (slight now, thankfully) brain fog component
In context ↗ - Sleep problems
something I struggled with severely during the early stages of LC recovery
In context ↗ - Pain & fibromyalgia
neuromuscular discomfort caused by fibromyalgia
In context ↗ - Breathlessness
sometimes affects with my ability to breathe deeply or take in a full breath
In context ↗ - Heart symptoms & palpitations
heart palpitations
In context ↗ - Muscle weakness
I just keep getting weaker and weaker it seems
In context ↗ - Anxiety & low mood
my depression is gone, my anxiety is gone
In context ↗ - Hair loss
I have it bad, and extreme recession
In context ↗
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