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Long COVID Severe → much betterIll 2 years before improving or writing

Bedridden with long COVID for six months, now much better, counseling helped anxiety

Cedar 30796 on RedditLast post Sep 2023

Condition
Long COVID
At worst
Severe (mostly bedbound)
Ill before improving or writing
2 years
Last post
Sep 2023
In their words
  • At worst: SevereAfter being bedridden from hypertonia for 6 months In context ↗
  • Now: Much betterI'm mostly ok physically now. The anxiety is GONE. In context ↗
  • Began after: a vaccinationAll started day after Pfizer shot 2.
Read from 10 of their posts and comments; links to the 8 this page draws on

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Summary

After a second Pfizer dose they developed a severe reaction: rashes, myositis that left them barely able to walk, IBS, tinnitus and Raynaud's, and were bedridden with hypertonia for six months. Fight-or-flight anxiety lasted over two years; an anxiety video and counseling let them minimize later anxiety-related symptoms by 95%, and they later reported being mostly ok physically while still recovering in PT and having muscle spasticity and dystonia.

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What they tried

What they credit

video about getting rid of anxiety· Helped a lot · mainiron infusions· HelpedPT for muscle retraining· Helped

Also tried

COVID vaccination as treatment· Worsesteroids· Not saidbiologicals or monoclonal· Not said
Their words about each treatment
  • steroids · Not saidI'm off steroids rn finally In context ↗
  • biologicals or monoclonal · Not saidno biologicals or monoclonal ever again for me In context ↗
  • iron infusions · HelpedThrew me into a porphyria flare but the feeling of dying and weakness was finally gone. In context ↗
  • PT for muscle retraining · HelpedI'm now recovering in PT. In context ↗
  • video about getting rid of anxiety · Helped a lotI finally understood I was making my anxiety worse and how to manage it. In context ↗
  • COVID vaccination as treatment · Worsemyositis- could barely walk In context ↗

Approaches: CBT & mindset · Physiotherapy and rehab · Supplements

Their path

Very severeSevereModerateMildNear normalRecovered

How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, in the order they describe; they don’t give enough times to place each step. Hover or tap a point. Dates are when they posted. What the levels mean.

Show as a table
WhenWhat happenedWhere they were
onsetsevere reaction the day after Pfizer shot 2: rash, myositis, could barely walkshot 2 Pfizer almost died. Next day covered in rash In context ↗Severe
—bedridden with hypertonia for six monthsAfter being bedridden from hypertonia for 6 months In context ↗Severe
—fight-or-flight anxiety, tinnitus, TMJ and vibrating legs lasting over two yearsI felt panicked, fight or flight all the time for over 2 years. In context ↗Moderate
—anxiety video changed their perspective; tinnitus and vibrating stopped, muscles betterIt changed me. It's not perfect but the tinnitus is gone a month later and the vibrating stopped. In context ↗Mild
2023-09-28mostly ok physically, anxiety gone, still muscle spasticity and dystonia, in PTI'm mostly ok physically now. The anxiety is GONE. In context ↗Mild

Adverse events

Symptoms mentioned

Anxiety & low moodGut problemsMuscle weaknessNeuropathy & tinglingPain & fibromyalgiaTemperature regulationTinnitusVision problems
Their words about their symptoms

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