Thanks so much for your message, Tori, and sorry it's taken me so long to get back here. I really appreciated hearing from you. Your message came at a time when I was feeling troubled and overwhelmed by my very stiff FS and it helped a lot.
I've had an MRI and x-rays, and I definitely have a classic FS - nothing else wrong with it. The orthopedist I finally saw said I'm in the 90th percentile of bad FSs! It was good to have someone acknowledge how bad it is, and at the same time depressing to hear that all my efforts to improve have gotten me NOWHERE.
The orthopedist offered me a cortisone injection, saying there was probably less than 50% chance that it would help. But the pain I experienced when they injected dye into my joint for the MRI a couple of weeks before was so bad that I couldn't tolerate even 5 CCs (I was literally crying on the table), so I decided to pass on the cortisone shot. He also said that he thought my shoulder wouldn't get better without surgery, because it's so stiff, AND that it's better not to wait too long.
I'm getting a second opinion.
I've heard from people who had VERY stiff FSs and then went on to recover full ROM without surgery. I've also heard a fair amount of miracle stories: after having bad frozen shoulders for months, some people suddenly recover full ROM all at once.
At this point, I'm skeptical of everything. Why intervene if the outcome is pretty much the same no matter what you do? I appreciate hearing from you, Tori, that in your experience people who have surgery take longer to heal.
But I need to do more research and get my second opinion before I decide how to proceed.
I've been having sessions with a Feldenkrais practioner who does gentle manipulations and teaches me very gentle exercises. This has really helped me sleep better and decreased my pain, but hasn't increased my ROM at all. I would definitely suggest it to others with FS to help with the pain, with this caveat: steer away COMPLETELY from any manipulations which make your shoulder even slightly more painful. Otherwise, you might have days of increased pain! The practioner will find ways to decrease the pain, but it will take some time and you have to keep speaking up whenever the pain flares up during a session. (Tedious, but worth it.)
I also find that walking and other light exercise, while it might hurt more in the moment, decreases the pain for long periods afterward.
For Angelrobert, who says that ROM keeps getting worse no matter what, I HEAR ya. For a long time it seemed like the exercises were MAKING it worse.
My strategy now is "No Pain, Most Gain". I do what I can to keep the rest of my body in shape, but I steer clear of anything that really hurts my shoulder. I cook less, I play guitar and piano less (even though I teach music for a living), I type less, I write less (it's the shoulder of my dominant hand), I rest often. Having looked at pictures of an inflamed shoulder capsule, it's obvious that it need lots of TLC, rather than stress. So yeah, icecream, funny movies, and when the pain is bad I breathe into my shoulder and visualize cute and beautfiul things like puppies and ducklings and rainbows and butterflies and lying on the beach. Seriously. I've lowered my expectations for getting things done, and I've put saving the world on hold for now
My general pain is way better, and I'm sleeping well, though I still wake up once every few nights in horrible pain which keeps me awake for awhile. My ROM is really tiny, but I've learned to live with it (for now).
I really appreciate having this forum. Sending warm fuzzy thoughts to you all.