sunshine44
The only way out, is through.
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Corticosteroids don’t prevent PEM in my case, actually, they do the exact opposite and cause it.
I took a single 20 mg dose of prednisone before being driven to a park for an afternoon with my wife. The temps were in the mid 60s with a slight breeze and high barometric pressure. We sat in our lounge chairs and relaxed in the sun.
To my surprise the prednisone did the opposite of preventing PEM! I took prednisone at 1215 and my ANS readings prior were low and calm. Stress readings were only at 10 to 18. At about 1430 my ANS started rising, as did my resting heart rate. All I was doing was sitting down. By 1630 my ANS was solid redline, my resting heart rate was back up at 85, and my stress numbers were averaging 75. This lasted until around 0300 when everything began dropping back to normal readings under the influence of the beta-blocker metoprolol. However, the racing ANS for about 12 hours caused me to crash into PEM and my waking body battery was an all time low for wake-up at 43. I was pretty much comatose on the couch for two days and dragging ass the rest of the week.
Two days ago I had to go to a sports doctor. My shoulders had stiffened up and been in daily pain for 6 months and needed to be looked at. After clean X-rays the agreed on the “frozen shoulder” theory. The X-rays did show any bone, tendon, ligament, or cartilage damage, so arthritis was ruled out. The doc said even though it appeared to be “frozen shoulder," it was severe and very atypical case. He gave me two steroid injections, one in each shoulder. My vision was terrible that day and so I was in the whiteout phase of being able to see nothing by flat featureless light. The staff were guiding me all over the building. They did a decent enough job but I could tell they weren’t used to working with severely visually impaired clients.
The doctor told me the pain should start subsiding in three days time, but the stiffness might take a year to work itself out and there isn’t any real way to speed the process. The body needs to slowly breakdown the excess protective tissue surround each joint capsule and reabsorb it. That takes as much time as the body requires.
I received the injections about noon. By 1430 my ANS started skyrocketing, as did my resting heart rate. I was tired from the doc visit and was just resting and napping in a lounge chair outside when everything began rising. By 1800 the ANS was completely redlined at 100% The resting heart rate was back up to 100 to 110 BPM. Stress level numbers were leveling at 85 and heart rate variability clocked in at 10. The autonomic nervous system continued all night in a 100% redline state on the smartwatch charts. My heart rate while sleeping was averaging 90 to 95. I had zero registered REM. My body battery plummeted to 12, and my wake up battery hit an all time low for waking at 13%. That next day I was gutted in a deep post-exertional malaise crash. My ANS chart at 1100 was still a solid block of redline with zero let up. I had a bunch of elevated dysautonomia/PoTS/M.E. symptoms going on.
My ANS is still redlining and I have no idea how long it will last before the beta-blocker metoprolol kicks back in. The prednisone resolved in about 12 hours, but the redlining ANS has after the steroid injections had so far been going for 2 days now. I’m in bed struggling like it was mid winter dictating this because I still can’t see.
Steroids have become a new enemy as they obviously override the beta-blocker. And with the ANS being suppressed daily from the metoprolol, when that beta-blocker is removed or overridden by another drug, the ANS overreacts above and beyond its normal abnormalities.
Therefore, as I said, corticosteroids in my case do not prevent PEM, but do the absolute opposite.
I am so sorry for this awful situation you are enduring