Long COVID, unemployed and using a cane, now somewhat better with steroid injections
- Condition
- Long COVID
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 4 years
- Last post
- Jul 2025
In their words
- Condition: Long COVID
I’ve never been symptom free in the 4 years I’ve had long covid-initial infection in July of ‘21
In context ↗ - At worst: Moderate
I always have PEMs nmw. ... I am unemployed and mostly have been since contacting LC-so I have a lot of time to rest.
In context ↗ - Now: Somewhat better
I’ve improved and been better at times, now being one of them, currently-but I’ve also regressed
In context ↗ - Began after: COVID
initial infection in July of ‘21
In context ↗
Summary
Long COVID began with a COVID-19 infection in July 2021 and continued after a September 2023 reinfection; they were never symptom free over four years. Chronic migraines, brain fog, pain, breathlessness, poor sleep and constant PEM left them unemployed and using a cane. Steroid injections got them off the cane, neurotropics eased brain fog, and Spravato eased anxiety, but LDN and a new sleep drug did nothing.
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What they tried
What they credit
Also tried
Their words about each treatment
- Botox tx · Helped
my medications, such as Botox tx every 3 months, topomax ... stopped being as effective-like less than 50% effective
In context ↗ - topomax · Helped
topomax, and some emergency meds like naratriptan stopped being as effective-like less than 50% effective
In context ↗ - naratriptan · Helped
some emergency meds like naratriptan stopped being as effective-like less than 50% effective
In context ↗ - Nurtec · Not said
I’ve had to go on several new medications, Nurtec every other day.
In context ↗ - Ajovy injections · No change
We tried Ajovy injections but those were ineffective.
In context ↗ - Vyepti · Helped
I now get a Vyepti infusion every 3 months ... It wasn’t having a huge effect but better slightly
In context ↗ - neurotropics · Helped a lot
Neurotropics did help a TON with my brain fog and Neuro symptoms.
In context ↗ - beet powder supplement · Helped
I used a brand of neurotropics and a beet powder supplement ... It did help.
In context ↗ - Sprivato tx's · Helped a lot
The most help was when I started Sprivato tx’s for TRD ... after my first treatment I felt completely different. It didn’t help my TRD, but it did help my anxiety, PTSD
In context ↗ - steroids · Helped
I was on large amounts of steroids for the last year, it helped what it was supposed to help, somewhat-my pain.
In context ↗ - PT · No change
medications weren’t managing my back and neck symptoms, as well as PT
In context ↗ - ADHD/any stimulant meds · Helped
all my prescription medicines stopped being effective-especially my ADHD/any stimulant meds
In context ↗ - Xywav · No change
I’ve just started one of the strongest most controlled sleeping medicines you can get-Xywav ... even the strongest most controlled medicine is not working for my sleep
In context ↗ - LDN · No change
I take LDN at 3mg(tapered up obviously, but started that 2 years ago and been at 3 for about a year
In context ↗ - nitric oxide · Not said
I just started nitric oxide before I had even seen it mentioned in here ... I took a saliva test and I was deficient in NO.
In context ↗ - Zyrtec · Not said
I have year round allergies and take several medications for that-Zyrtec Flonase and Singulair
In context ↗ - inhaler · Helped
I just started a new one and it’s doing better already
In context ↗ - albuterol · Helped
I was on albuterol but it stopped helping my difficulty breathing
In context ↗ - rest · Not said
I am unemployed and mostly have been since contacting LC-so I have a lot of time to rest.
In context ↗
Approaches: Other drugs and medicines
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 2.5 years after onset: the story doesn’t say how ill they were before that. 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 |
|---|---|---|---|
| July 2021 | COVID-19 infection; long COVID beginsinitial infection in July of ‘21In context ↗ | Not stated | |
| September 2023 | COVID reinfectionreinfected September of ‘23In context ↗ | Not stated | |
| 2024 | unemployed, chronic pain, needing a cane for longer walksThe shots did get me off my cane ... I am unemployed and mostly have been since contacting LCIn context ↗ | Moderate | |
| 2024-2025 | off cane after steroid injections for painThe shots did get me off my caneIn context ↗ | Moderate | Corticosteroid pulses |
| 2025-07-01 | better days but never symptom free; constant PEM, migraines and poor sleepI’ve improved and been better at times, now being one of them, currently ... I always have PEMs nmw.In context ↗ | Moderate |
Adverse events
- Corticosteroid pulses“it made me obese now(gained 80lbs in 6 months-I’m a little pissed honestly they let that happen)” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Headaches & migraine
I have a migraine for about 3-4 days usually then finally maybe 1-2 days without
In context ↗ - Brain fog
I have trouble recalling words frequently from the onset. I called it “covid brain”.
In context ↗ - Post-exertional malaise
I always have PEMs nmw.
In context ↗ - Sleep problems
even the strongest most controlled medicine is not working for my sleep
In context ↗ - Anxiety & low mood
stress/anxiety-which have also been difficult to manage
In context ↗ - Pain & fibromyalgia
The worsening of my chronic pain
In context ↗ - Breathlessness
it stopped helping my difficulty breathing
In context ↗ - Mast cell (MCAS) & allergies
I have year round allergies and take several medications for that
In context ↗
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