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Thank you for the helpful info. I will look into it. I can’t take the midodrine. It makes my LC insomnia worse. I am also on 5mg Lisinopril for high bp, but am cutting that in half. I think that my pcp will be okay that and just shot her a message through the portal.
I can’t do any cardio because that will more than likely throw me into LC PEM. Fatigue has been bad and have slowly worked my way up to taking walks when possible. There are multiple medical issues that I’m dealing with even prior to Covid, but Covid has turned everything upside down and it feels like I will need to further re-evaluate medical protocols that no longer work for me.
I live in the Midwest too. I also have my application in at the long covid clinic in Alabama. 3-5 months before they can look it over. 🙃
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That’s interesting that the midodrine exacerbated your insomnia. Thanks for sharing; it just so happens that my neurologist told me that’s one thing he feels comfortable prescribing for me, but I don’t remember insomnia being mentioned as a side effect. Everything’s different though.
My PEM has improved slightly; thankfully I seem to be someone who can do cardio in micro-doses (like your walks) as long as I’m mindful of my “rate of perceived exertion.” I met with one of the long COVID PTs at Johns Hopkins where I was lucky to establish care in their POTS Clinic (their POTS team morphed into covering Long COVID as well), and the approach they’ve been using has been exercising in mico-doses, advising patients to go by their rate of perceived exertion (on a scale of 0-10), to aim for around an RPE of 3-5, for as long as you can even if it’s a few minutes, without causing symptoms.
The problem is that it’s tricky since PEM is delayed! The strategy has helped me though.
I’m in Illinois and have done a consultation with the Long COVID clinic at Northwestern Medicine downtown location. They brought on a PA within the last year, and I waited only 3 months for an appointment. It’s been helpful, but a lot still falls on us to coordinate things and they rely a lot on things they can prescribe. It’s kind of frustrating because even though they can diagnose someone, the treatments for stuff like fatigue and PEM and brain fog are still as limited as they were when I had it before COVID!