Long COVID, weaker and using a cane, now somewhat better with LDN and pacing
- Condition
- Long COVID
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 3 years
- Last post
- Jun 2025
In their words
- Condition: Long COVID
I'm about 7-9 months long-hauling. I was doing really great and getting a lot of my normal life back.
In context ↗ - At worst: Moderate
I'm definitely significantly weaker than before (I use a cane now)
In context ↗ - Now: Somewhat better
I hardly post on here and wouldn't consider myself recovered - but I have some semblance of a life and LDN has given me a bit more spoons to do things with.
In context ↗ - Began after: COVID
originally contracted covid in may 2022
In context ↗
Read from 18 of their posts and comments; links to the 12 this page draws on
Summary
Grove 46838 caught covid in May 2022 and has had long covid for over two years, including PEM, brain fog, IBS, muscle weakness and widespread nerve pain. A Europe trip in September 2023, when they had been improving, triggered a flare that settled with rest. Weaker and using a cane by 2024, they credit LDN, pacing and diet tweaks for some semblance of a life, though they do not call themselves recovered.
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What they tried
Also tried
Their words about each treatment
- Loratadine (allergy med) · Helped
I tried taking a Loratadine (allergy med) the other day and that seemed to vastly improve my symptoms
In context ↗ - meat-based diet · Helped
trying to shift my diet into something more meat-based ... A few small dietary adjustments as well.
- rest and pacing · Helped
I'm getting back to my baseline now after lots of rest. ... it feels like it had more to do with LDN + pacing than any particular lifestyle changes
- Ketamine · Helped
Ketamine and magic mushrooms help me get back in touch with myself when I start feeling really disconnected.
In context ↗ - NAC · Helped
It's helped me. I would say it makes a 10% difference or so in my baseline
In context ↗ - creatine · Helped
creatine for 3 months has seemed to give me back some strength
In context ↗ - super fatty shakes (peanut butter, coconut oil) · Not said
Also started drinking super fatty shakes with peanut butter coconut oil ect in them.
In context ↗ - caffeine (black tea) · Helped
caffeine really helps me
In context ↗ - Cymbalta (duloxetine) · Helped
I started cymbalta a few months ago and it's done a lot for my constant nerve pain ... Low dose cymbalta helped a bit but the pain came back
- Lamotrigine · Not said
the lamotrigine I've been on for many years (mood regulation)
In context ↗ - HRT · Not said
I take Duloxetine, Lamotrigine, and HRT.
In context ↗ - melatonin · Not said
Supplement-wise I'm taking NAC, melatonin, and psyllium husks.
In context ↗ - weed (THC) · Helped
The only thing I've found consistently helpful is weed and lots of it
In context ↗ - CBD · Helped
CBD is only somewhat as effective as THC.
In context ↗ - therapy · No change
I've been in therapy since before my 2 years of LC and weekly since then. ... it definitely didn't reduce my symptoms or anything
In context ↗ - LDN · Helped
LDN has given me a bit more spoons to do things with.
In context ↗
Approaches: Diet · Pacing · 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. The chart starts 14 months after onset: the story doesn’t say how ill they were before that. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| May 2022 | caught covid, never fully recoveredoriginally contracted covid in may 2022In context ↗ | Not stated | |
| mid 2023 | getting a lot of normal life backI was doing really great and getting a lot of my normal life backIn context ↗ | Mild | |
| September 2023 | crashed after travelling in Europe and walking around Vatican CityWent travelling, I'm in a huge flareup.In context ↗ | Moderate | |
| 16 September 2023 | back to baseline after restingI'm getting back to my baseline now after lots of rest.In context ↗ | Mild | Pacing and the energy envelope |
| May 2024 | significantly weaker, started using a caneI'm definitely significantly weaker than before (I use a cane now)In context ↗ | Moderate | |
| May 2024 | some strength back, but same PEMcreatine for 3 months has seemed to give me back some strengthIn context ↗ | Moderate | Creatine |
| June 2025 | some semblance of a life, not recoveredI have some semblance of a life and LDN has given me a bit more spoons to do things with.In context ↗ | Mild | Low-dose naltrexone |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I still experience the same level of PEM as before, from the same level of exertion
In context ↗ - Brain fog
I still deal with fatigue, ibs, and tons of brain fog
In context ↗ - Pain & fibromyalgia
my worst enemy is chronic pain, and ideal with nerve/muscle pain across my whole body 90% of the time
In context ↗ - Neuropathy & tingling
I started cymbalta a few months ago and it's done a lot for my constant nerve pain :)
In context ↗ - Muscle weakness
I'm definitely significantly weaker than before (I use a cane now)
In context ↗ - Anxiety & low mood
while I feel reduced emotions I'm also pushed more to seek them out
In context ↗
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