Long COVID with daily pain, brain fog and fatigue, somewhat better with Adderall
- Condition
- Long COVID
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 2 years
- Last post
- Dec 2023
In their words
- Condition: Long COVID
I have had LC since 10/21
In context ↗ - At worst: Moderate
I'm not bed bound, I'm finally back to working from home PT. It's all about pacing. ... Every day I have to take a nap.
- Now: Somewhat better
It has helped but I'm far from cured. ... 2 plus years and I can walk 12 minutes on a treadmill at 2.8 mph.
- Began after: COVID
I have had LC since 10/21
In context ↗
Read from 44 of their posts and comments; links to the 24 this page draws on
Summary
A healthcare worker who developed long COVID in October 2021, with daily leg and muscle pain, brain fog, fatigue, breathlessness and PVCs. Prednisone helped pain and breathing but caused high blood sugar and clinical diabetes; metformin did not help their LC symptoms. Adderall eased fog and fatigue; they paced, napped daily and worked part-time from home. By late 2023 they could walk 12 minutes, but symptoms returned and they still had daily pain.
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What they tried
What they credit
Also tried
Their words about each treatment
- pacing · Helped
I'm not bed bound, I'm finally back to working from home PT. It's all about pacing.
In context ↗ - massage · Helped
Massage barely helps but for a day maybe.
In context ↗ - naltrexone · No change
I tried for 2 months, it didn't help me but I'm willing to try anything.
In context ↗ - predisone · Helped
Only thing that helps w breathing and muscle pain in my legs.
In context ↗ - pain pills (motrin, Tylenol, vicodin) · No change
Even pain pills really don't help.
In context ↗ - adderall · Helped
I have had success with 15 MG adderall BID. I almost feel normal.
In context ↗ - vitamin D · Not said
I do have low vitamin D, even with 10,000 per day it's staying low.
In context ↗ - ashuguanda · Helped
I tried ashuguanda (spelled wrong) and that seemed to help.
In context ↗ - cpap · No change
3 weeks later I feel the same, no improvement.
In context ↗ - metoprolol · Not said
I take 100mg metoprolol twice a day. It still jumps from time to time.
In context ↗ - albuterol · No change
I still have SOB with exertion and albuterol doesn't help.
In context ↗ - long covid clinic · Helped
I got into a covid clinic in Cincinnati Ohio. It has helped but I'm far from cured.
In context ↗ - metformin · No change
my doctor put me on metformin to treat the diabetes but I haven't noticed any positive effects on my LC symptoms.
In context ↗ - blowing up balloons · Helped
I blow up a balloons and that seems to help but temporarily.
In context ↗ - muscle relaxers, sinus pills, nasal spray · No change
I have tried motrin, Tylenol, muscle relaxers, sinus pills, vicodin, and nasal spray. Nothing helps what I call covid headaches.
In context ↗ - Advil · Helped
Advil helps some but nothing takes it away.
In context ↗ - atrovent nasal spray/ipratropium · Worse
I started atrovent nasal spray/ipratropium spray. It dries my nose but also causes nose bleeds.
In context ↗
Approaches: Pacing · Stimulants
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 22 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 |
|---|---|---|---|
| 2021-10 | COVID-19 infection; long COVID beganI have had LC since 10/21In context ↗ | Not stated | |
| 2023-08-08 | daily lower-extremity pain and post-exertional crashes; pacingI have lower extremity pain 90% of the time. ... If I do too much of ANYTHING it backfires. | Moderate | |
| 2023-08-19 | returned to part-time work from home with pacingI'm not bed bound, I'm finally back to working from home PT. It's all about pacing.In context ↗ | Mild | Pacing and the energy envelope |
| 2023-09-28 | crashed after three days without naps; in bed two daysI was in bed for 2 full days.In context ↗ | Severe | |
| 2023-10-21 | Adderall helped; almost felt normalI have had success with 15 MG adderall BID. I almost feel normal.In context ↗ | Mild | Amphetamine salts (Adderall) |
| 2023-11-29 | symptoms returned; heart rate 133 walking to kitchenmy symptoms have come back for no reason. Woke up today, walked to the kitchen to find my HR was 133.In context ↗ | Moderate | |
| 2023-12-17 | walking 12 minutes on treadmill; working part-time from home2 plus years and I can walk 12 minutes on a treadmill at 2.8 mph.In context ↗ | Mild | Pacing and the energy envelope |
Adverse events
- Corticosteroid pulses“I now have high blood sugar ... mine went as high at 300” Side effects
- Low-dose naltrexone“I have been on 1mg QD for less than a month. It makes me so tired but hadn't helped yet.” In context ↗ Side effects
- “I started atrovent nasal spray/ipratropium spray. It dries my nose but also causes nose bleeds.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
If I do too much of ANYTHING it backfires.
In context ↗ - Brain fog
I have bad fog, only thing that helps is adderall.
In context ↗ - POTS & dysautonomia
Woke up today, walked to the kitchen to find my HR was 133.
In context ↗ - Sleep problems
I also did a sleep study and have sleep apnea.
In context ↗ - Pain & fibromyalgia
I have muscle and bone pain my legs daily.
In context ↗ - Headaches & migraine
Covid headaches last 6 to 10 hours.
In context ↗ - Breathlessness
I still have SOB with exertion and albuterol doesn't help.
In context ↗ - Neuropathy & tingling
My legs felt like they were buzzing when I would try to go to sleep.
In context ↗ - Anxiety & low mood
At least I have support for when I feel like jumping off a bridge.
In context ↗ - Flu-like symptoms
Pain all over, slight fever, fog and fatigue that sleep didn't help.
In context ↗
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