by SparkleFly12 » Sat Aug 21, 2021 9:27 pm
At 2.5 years and mostly better now. But I had really bad physical symptoms that tapered off slowly for the first 2 years. Still have some mild ones on my bad days now.
Headache was by far the worst. My head felt like it was in a clamp - multiple clamps compressing my head in every direction. It was debilitating. Started week 1 and got better slowly over 2 years. It was unrelenting, every day, nonstop.
Facial pressure (felt like sinus pressure). Had it for 2+ years. Usually around the eyes. It's mostly better now, but I do get it occasionally during a paws wave.
Sore muscles. It was like my muscles would just not repair themselves overnight like they're supposed to. It was so bad that things I use every day (fingers, hands, legs) were perpetually sore. If I exercised, it was a 1 week recovery before I would be the "normal" sore again. This lasted about a year and a half.
Swollen lymph nodes in jaw. It started out as both sides, but the right side got better after 6 months or so. The left side is one of my remaining symptoms whenever I have a PAWS wave now. It was very swollen for 27 months. It felt like you do when you're sick and your lymph nodes swell, but only on one side and bigger than usual. I could physically feel it was bigger by touching my left and right side jaw and comparing the two. Though it wasn't painful, it was very annoying and usually came along with other worse symptoms.
Tinitis. Had it on 4 or 5 occasions, lasting 2 or 3 days at a time. Very annoying but again not painful.
Low libido / ED, really a mental problem but it's lasted 2 1/2 years and just feeling some weeks where I'm doing better now.
Night sweats. I hardly slept at all the first few months but those few hours I did I would sweat like crazy. And it would smell.
Everything else I had I would qualify as mental - stress, anxiety, brain fog, depression, insomnia, crazy dreams. But for me, the headache was by far the worst thing I had to deal with (followed closely by insomnia).