In case you do check back in, I have pvns, too. Mine is in the left ankle. Fortunately for me, I have little pain since I can't walk, and so, no weight on the ankle. I do take an occasional Tylenol if it aches or I don't have the foot elevated, but since the first few days after surgery, I stopped taking the Percoset (it made me dizzy and nauseous so I only took it to sleep). I stopped the Mobic since I found out the pain was not caused by arthritis, so other than joint compound (MSM, chondroitin, & glucosamine), calcium, and a multi-vitamin with iron, I don't have to take pain meds regularly now. Maybe once physical therapy starts and I can walk again, I'll need more.
Also, unlike you, my kids are grown & I live alone and can set my ;own schedule. I do teach a psychology class on Monday nights, but with wheelchair and crutches, I get around well enough. The roughest thing for me is not being able to drive and having to depend on chore services and transportation by others. Not walking does not interfere with my job or favorite activities (cooking/baking, and reading) but it does isolate me some.
I suspect that our condition is not as rare as once thought; it's just rarely diagnosed properly! I had it for at least 5 years before finally getting a real answer. In the meantime, I was not able to walk for fear the damaged bone would collapse completely. So, I had a ramp built and now navigate in a wheelchair at home with the help of crutches in tight places.
Did you have a full synovectomy? Did the tumors invade the bone? Some people have received relief with radiation, but I don't blame you for not wanting that. I'm glad surgery was the treatment given me. I may need radiation and/or ankle replacement eventually, but I guess I'm hoping I'm one of those for whom surgery got all the tumors and that the problem does not recur. Only time will tell. At least I live in a sunny, beautiful plaqce. I thank God I did not have to stay in Indiana after surgery!
Good luck to you, and know that you are not alone! Incidentally, the latest stats are 1 in 1.8 million. Still quite rare, but there are more of us than thought for years.