@melissawolfe1981 and @jw9 ,
Hello. Nice to meet you both!

@melissawolfe1981 -Im so sorry to hear about your new diagnosis, although I understand the measure of relief we have when we finally know what’s wrong. I was diagnosed in 1986 with ME/CFS following a bad Epstein Barr virus infection. Back then they called it “Yuppie Flu” where I lived.

Like @jw9 , I’ve also developed quite a few comorbid conditions over the decades. Eg: Hashimoto’s, autoimmune Axonal Polyneuropathy, chronic tinnitus, POTS, sleep apnea, arrhythmias, anxiety, and a few other things.

This disease can fluctuate greatly over the years as it waxes and wanes. I was bedridden the first 2-3 years and only went out for Dr appointments. By year 10 I improved to about 70% - still couldn’t work outside the home but could travel, go to concerts, garden, and do so much more. Now at 40 years I’m home bound again but can do basic household tasks with careful pacing.

Treatment wise, I’ve tried many things, supplements, diets, etc. without success. The one medication that has made a big difference is low dose Naltrexone. I don’t need pain medication- which is remarkable considering I have severe neuropathy, osteoarthritis, and pain from. fibromyalgia and ME/CFS.

Pacing to conserve energy is the single most important thing for me in order to function and avoid PEM.

Also relaxation with breathing techniques to reduce stress is very helpful.

I’ve personally known several people who fully recovered after 2-3 years. That seems to be in keeping with what I’ve read. But for those of us who don’t recover or fully recover, attitude is everything. Can’t stress that enough. Learning to embrace and even enjoy “Life in the Slow Lane” can be rewarding in its own right. There are still so many things that we can enjoy and be thankful for in this world.

@melissawolfe1981 , please let me know how you get along with the Modafinil. I was prescribed that recently by my neurologist but was reluctant to take it.

Solve ME Initiative (Formerly CFIDS Association of America) is a fantastic research and advocacy organization that’s been around since the 80’s. Here’s a link to their site. https://solvecfs.org/

Also the Phoenix Rising forums have many patients who follow all the latest research. Lots of in depth discussions over there.

Best wishes to you both! ❤️