Long COVID
Severe → no benefitIll for 5 years
Bedridden with long COVID, low-dose naltrexone brought no physical improvement
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill for
- 5 years
- Last post
- Aug 2024
In their words
- Condition: Long COVID
for what is diagnosed as seronegative rheumatoid arthritis, but I suspect may be long covid
In context ↗ - At worst: Severe
I'm basically bedridden because laying horizontally is the only thing that helps the edema and vascular pain
In context ↗ - Now: No benefit
my condition has worsened so much in recent months
In context ↗ - Began after: COVID
for what is diagnosed as seronegative rheumatoid arthritis, but I suspect may be long covid
In context ↗
Read from 12 of their posts and comments; links to the 11 this page draws on
Summary
Mesa 26022's illness, which they suspected may be long COVID, includes a vascular leg problem that has plagued them for nearly five years and was liveable for four. In April 2024 immunosuppressants tried for rheumatoid arthritis left them bedridden, able to walk about a minute at a time. Low-dose naltrexone from May lifted mood, motivation and cognition, though physical impairment remained.
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What they tried
Also tried
Their words about each treatment
- compression socks · Worse
Compression socks used to be a lifesaver for me, but strangely they went from helpful to hurtful a few months ago.
In context ↗ - cold showers · Worse
I used to try cold showers, even just for 5-30 seconds at the end of a hot shower ... In my case it seemed to make me worse
In context ↗ - prednisone · Helped a lot
And not only did my pain disappear, but my brain fog and many other symptoms were instantly better.
In context ↗ - Plaquenil · Helped
Then I was put on Plaquenil last October and quickly gained back about 25 pounds ... I do think plaquenil has given me some improvement.
In context ↗ - immunosuppressant drugs · Much worse
ever since I briefly tried some immunosuppressant drugs for my Rheumatoid Arthritis ... I've had some kind of sudden-onset dysautonomia
- Low Dose Naltrexone · Helped a lot
it has been a HUGE help for my depression and brain fog and energy levels ever since I started taking it last month
In context ↗ - cetirizine · Worse
I tried taking nighttime doses of cetirizine for a week, but didn't notice any difference other than some lingering tiredness after waking up
In context ↗ - lamictal · Not said
I used to take lamictal for bipolar and I tolerated the med very well, it seemed to have zero side effects for me.
In context ↗ - black seed oil · No change
never noticed a single positive effect from it when taking it (even for months at a time)
In context ↗ - Visible app · Not said
Hmm, I had tried the visible app for a while but never learned how to connect my Polar to it.
In context ↗
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. 2 steps say too little to place on the scale and are only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| onset | onset of illness with a painful vascular leg problem that was liveable for four yearsFor the past 4 years it was liveable (albeit annoying)In context ↗ | Mild | |
| September 2023 | one-week prednisone burst cleared pain, brain fog and other symptoms, then the gains went awaynot only did my pain disappear, but my brain fog and many other symptoms were instantly betterIn context ↗ | Not stated | Corticosteroid pulses |
| October 2023 | started Plaquenil and regained about 25 poundsI do think plaquenil has given me some improvementIn context ↗ | Not stated | Hydroxychloroquine / Plaquenil |
| April 2024 | bedridden after a brief trial of immunosuppressant drugs for rheumatoid arthritisit has left me bedridden for almost 3 months now. I can only manage to walk for like 1 minute at a timeIn context ↗ | Severe | |
| June 2024 | mood, motivation and thinking improved while still physically impairedmy mental health is suddenly better than it has been in yearsIn context ↗ | Severe | Low-dose naltrexone |
| August 2024 | still physically impaired; using sleep apps and HR/HRV to paceI can watch my HR/HRV numbers and get an idea for when my body is acutely strainedIn context ↗ | Severe |
Adverse events
- Cetirizine (Zyrtec)“I tried taking nighttime doses of cetirizine for a week, but didn't notice any difference other than some lingering tiredness after waking up in the morning.” In context ↗ Side effects
- Cetirizine (Zyrtec)“I've never had much success when trying antihistamines (I just end up feeling very drowsy without any noticeable positive effects)” In context ↗ Side effects
- “I've had some kind of sudden-onset dysautonomia ever since trying immunosuppressant drugs” In context ↗ Made symptoms worse
- Compression garments“Ever since April, wearing compression socks massively increases the swelling/numbness/pain in my feet and ankles.” In context ↗ Made symptoms worse
- Low-dose naltrexone“I have trouble falling asleep at night when I take it in the evening” In context ↗ Insomnia from treatment
- Black seed oil (Nigella sativa)“All I ever noticed was that it made my burps taste like pencil shavings, lol” In context ↗ Side effects
- Cryotherapy and cold exposure“I used to try cold showers, even just for 5-30 seconds at the end of a hot shower ... In my case it seemed to make me worse” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodBrain fogHair lossHeart symptoms & palpitationsNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgia
Their words about their symptoms
- Brain fog
it has been a HUGE help for my depression and brain fog and energy levels
In context ↗ - POTS & dysautonomia
I've had some kind of sudden-onset dysautonomia ever since trying immunosuppressant drugs
In context ↗ - Pain & fibromyalgia
because of unexplained joint and muscle pain
In context ↗ - Heart symptoms & palpitations
it's bad when my HRV drops super low and my HR is very high
In context ↗ - Hair loss
I have had mild hair loss in recent as well
In context ↗ - Neuropathy & tingling
massively increases the swelling/numbness/pain in my feet and ankles
In context ↗