Managing Post-Exertional Malaise (PEM): What can help?

i'm right there with what you just wrote and at 78 yrs. of age it's difficult to accept that we're no longer who we were because of covid as well as our age. covid has been a life changer and i spend a lot of time in my head as well as researching what might help. some moments are better than others in trying to accept the new/yet old me, esp. when i look good on the outside and i've given up trying to explain myself and health issues to others who usually don't understand....incl. drs.

I was diagnosed with chronic encephalopathy and immune deficiency in 1984 by two immunologists. This diagnosis later morphed in the ME/CFS. My earliest symptoms were horrible headaches; head ringing and reactions to all kinds of meds, chemicals and foods. I also had a lot of infections and reactions to the antibiotics used for them. The doctors put me on an orphan drug from Germany which was a type of anticoagulant and transfer factor. When these doctors retired I went to see Dr. Paul Cheney, who was the "guru" of CFS at the time. He constantly tried new treatments and eventually developed something called cell-signaling gels which are somewhat like stem cells, but in cream form. Using his gels, I was able to lead a relatively normal life as long as I paced myself carefully balancing working; traveling, a little golf and painting. Just before Dr. Cheney passed away two years ago, he recommended that I use a product called Nexavir made by the Nexco company. It is an old antiviral that used to be called Kutapressin. It is now available in cream form and available without a prescription. The company rep said they are having luck with it in Long Covid as well as ME/CFS. I got Covid twice in 2022-23 and had subsequent heart, blood pressure and balance problems on top of ME/CFS. I believe the Nexavir has helped me crawl out of this pit of misery, but it is not
a cure, just a very useful treatment. My heart and bp problems are much better and I am working on balance which seems to be improving also.

I, too have found help through therapy. I am going to start tracking what I can and can not tolerate. Thank you for the post.

Hi @rinadbq. Once again your perfect word of “hate” in the way our lives are so changed is more appreciated than words can say! Truly hope you the quickest healing possible with all you have helped and continue to do for so many🌈