Long COVID
Moderate → no benefitIll for 17 months
Long COVID fatigue and brain fog, still breathless after a walk, no improvement
- Condition
- Long COVID
- At worst
- Moderate (mostly housebound)
- Ill for
- 17 months
- Last post
- Nov 2022
In their words
- Condition: Long COVID
My long COVID feels worse than at the begging, or maybe is the CFS.
In context ↗ - At worst: Moderate
Now, a walk around the block with my dog with leave me exhausted and panting without breath.
In context ↗ - Now: No benefit
I have been feeling extremely tired, even after spending 10h in bed ... My long COVID feels worse than at the begging, or maybe is the CFS.
- Began after: COVID
For me it was telling Dr my COVID history
Read from 6 of their posts and comments; links to the 5 this page draws on
Summary
The Reddit user developed long COVID in mid-2021 with fatigue and brain fog, and was told by a CFS doctor that with a year of fatigue it could qualify as CFS. Daily headaches began in spring 2022 and only Botox eased them; they were taking LDN and had just started Abilify. By November 2022 they were extremely tired even after 10 hours in bed, and a walk around the block left them exhausted and breathless, with fibromyalgia pain disturbing sleep.
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What they tried
Also tried
Their words about each treatment
- daily preventive meds · No change
I take daily preventive meds, plus Botox and yet I feel them. ... my meds didn’t help
- Botox · Helped
Only Botox treatment made a difference. However, for health insurance to approve, it takes you trying other methods before.
In context ↗ - LDN · Not said
I’m taking LDN for a few months already and just started Abilify. ... And I’m not even sure the medication is helping.
- Tylenol · No change
after spending hours there all they gave me was Tylenol, Benadryl and lidocaine patch. I’m still feeling pain
In context ↗ - gabapentin · Not said
I’m still feeling pain and having to manage with gabapentin and zanaflex.
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 |
|---|---|---|
| onset | long COVID with fatigue and brain fog after COVID-19yet feeling extremely fatigued and brain fogIn context ↗ | Mild |
| late April 2022 | daily COVID headaches beganSince late April/early May I’ve been getting daily headaches as well.In context ↗ | Not stated |
| 2022-06-22 | fatigue worse than at the startMy long COVID feels worse than at the begging, or maybe is the CFS. So much fatigue.In context ↗ | Moderate |
| 2022-07-25 | daily headaches eased by Botox injectionsOnly Botox treatment made a difference.In context ↗ | Not stated |
| 2022-09-05 | severe pain flare, went to the ERBeen dealing with these symptoms at low level until this week it hit me incredibly.In context ↗ | Moderate |
| 2022-11-14 | still extremely tired after 10 hours in bed; a walk round the block leaves them exhausted and breathlessNow, a walk around the block with my dog with leave me exhausted and panting without breath.In context ↗ | Moderate |
Symptoms mentioned
Their words about their symptoms
- Brain fog
yet feeling extremely fatigued and brain fog
In context ↗ - Sleep problems
my sleeping is constantly interrupted by fibromyalgia pain and my dog
In context ↗ - Pain & fibromyalgia
my sleeping is constantly interrupted by fibromyalgia pain
In context ↗ - Headaches & migraine
Since late April/early May I’ve been getting daily headaches as well.
In context ↗ - Breathlessness
leave me exhausted and panting without breath
In context ↗ - Anxiety & low mood
Some days I feel like my life is over
In context ↗