Bedridden at worst with long COVID, now much better with pacing and Ritalin
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 2 years
- Last post
- Apr 2022
In their words
- Condition: Long COVID
I believe I suffer from CFS from long covid
In context ↗ - At worst: Severe
I am here in bed smacked down with horrible fatigue. My arms feel like lead weights. My brain is absolute mush.
In context ↗ - Now: Much better
I feel a lot better than I used to ... My fatigue is still there but not like I just moved a house of furniture.
- Began after: COVID
I believe I had Covid from Dec 23rd 2019 to about Feb 10th 2020.
In context ↗
Read from 40 of their posts and comments; links to the 24 this page draws on
Summary
Mesa 83074 fell ill with what they believe was Covid in December 2019, was sick two months, then long hauled with fatigue, brain fog, POTS and chest pain, at worst bedridden. Over about two years symptoms slowly eased; Ritalin, blood-pressure medicine, vitamin D and pacing helped some, while antidepressants and other drugs caused side effects. By April 2022 much better, but fatigue, brain fog, tinnitus and GERD remained.
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What they tried
What they credit
Also tried
Their words about each treatment
- Ritalin · Helped
I take 10 mg Ritalin 2x a day but I also have ADD and horrendous brain fog. ... I do feel better when I take it but it is only for a few hours.
In context ↗ - pacing · Helped
I agree on the pacing! I learned that here and it helps me.
In context ↗ - moderna · No change
After both vaccines I felt pretty much the same. I would not say it made me better or worse.
In context ↗ - vitamin d · Helped
I felt better after starting to take Vit d supplement. Still not how I was before but better!
In context ↗ - b1 · Not said
I take vitamin d, b1, b12, and magnesium.
In context ↗ - melatonin · Helped
I use melatonin but I am very, very sensitive to medication so I cut my pill into fourths. I sleep great for about 5 hours.
In context ↗ - ibuprofen · Not said
I take ibuprofen twice a day for my osteoarthritis already.
In context ↗ - nebulizer treatment · Helped
I only got relief from a nebulizer treatment when my coughing was really bad. ... I have coughing fits that only a nebulizer will help.
- forcing myself up and down the stairs · Not said
I try to stay as physically active as I can and my house has stairs. I try to force myself to go up and down all the time to not get weaker.
In context ↗ - Exforge blood pressure medicine · Helped
I now take Exforge blood pressure medicine ... I don’t have the headaches I think I was having from the high blood pressure and I do have less fatigue.
In context ↗ - antidepressants · Worse
I tried about six types of medications and unfortunately I seem to be super sensitive to medication since I got Covid.
In context ↗ - antihistamines · No change
I am trying to eat better, taking supplements and taking antihistamines. Nothing is working.
In context ↗ - Duloxetine (Cymbalta) · Worse
I finally found one, Cymbalta, but after 2 months I just couldn’t take the fatigue. I was pretty much homebound.
In context ↗
Approaches: Pacing · Stimulants · 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 21 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 |
|---|---|---|---|
| December 2019 | Acute Covid-19 illness, sick until mid-February 2020I believe I had Covid from Dec 23rd 2019 to about Feb 10th 2020.In context ↗ | Not stated | |
| September 2021 | Bedridden much of the time, in bed or at homeI stay in bed or at home because my bones are tired and my brain can’t focus.In context ↗ | Severe | |
| November 2021 | Started to feel a bit betterI had just started to feel a bit better in November.In context ↗ | Moderate | |
| December 2021 | Suspected Omicron reinfection knocked them back to full-blown long haulI am very sure I was infected again around December 6th. It knocked me on my ass all over again.In context ↗ | Moderate | |
| January 2022 | Blood-pressure medicine and higher-dose vitamin D; less fatigue and headachesI felt better after starting to take Vit d supplement. Still not how I was before but better!In context ↗ | Moderate | Vitamin D and sun exposure |
| April 2022 | Much better after two years; still has fatigue, brain fog, tinnitus, GERD and blurry eyesI feel a lot better than I used to and it has 0 to do with my doctor.In context ↗ | Mild |
Adverse events
- COVID vaccination as treatment“I had both moderna shots. The first was like a 3 day flu. The 2nd kicked my butt. That was like a week long flu.” In context ↗ Side effects
- “As a side note, I needed my booster for DTAP and wow! That was worse!” In context ↗ Side effects
- Methylphenidate (Ritalin, Concerta)“I tried extended release and that was terrible for me.” In context ↗ Side effects
- Antidepressants (unspecified)“The stupid pills just make me sleep all day so I keep trying them and then refusing to take them.” In context ↗ Side effects
- Antidepressants (unspecified)“I can’t take them because serotonin seems to kick my butt!” In context ↗ Side effects
- Antidepressants (unspecified)“Some of the antidepressants made me sleep for 20 hours!” In context ↗ Side effects
- Antidepressants (unspecified)“Some made me so nauseated I couldn’t eat all day.” In context ↗ Gut side effects
- Duloxetine (Cymbalta)“I finally found one, Cymbalta, but after 2 months I just couldn’t take the fatigue. I was pretty much homebound.” In context ↗ Made symptoms worse
- “I tried this as well but I still was nauseated and drowsy!” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
sleep problems, medication intolerance, PEM, chest pain, anxiety
In context ↗ - Brain fog
I get confused easily, say the wrong words, forget short term things
In context ↗ - POTS & dysautonomia
I have been suffering POTS and CFS symptoms for two years after being sick for 2 months.
In context ↗ - Sleep problems
Some of my symptoms got better over time like insomnia
In context ↗ - Pain & fibromyalgia
My ribs and chest hurt for about a year after being sick first.
In context ↗ - Headaches & migraine
my HR, SOB, tinnitus, and headaches, etc. are much better
In context ↗ - Gut problems
I have GERD issues
In context ↗ - Breathlessness
my crazy heart rate and shortness of breath episodes were less
In context ↗ - Heart symptoms & palpitations
I also have bouts of tachycardia and crazy fluctuations with heart rate.
In context ↗ - Muscle weakness
My limbs get weak and I have to rest all the time.
In context ↗ - Anxiety & low mood
I get the impending doom feeling maybe 2 times a month. Anxiety attack about 4 times a week maybe.
In context ↗ - Flu-like symptoms
swollen lymph nodes that come and go
In context ↗ - Tinnitus
I still have tinnitus
In context ↗ - Vision problems
my eyes still get blurry
In context ↗ - Hair loss
my hair is still shedding
In context ↗
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