Really sorry to hear that!!
Did they give you measures for prevention, things that you can do for better circulation (sorry if that was mentioned and have I read over it)?
Yes, the breathing does change the body chemistry and pain-receptors in the brain. This effect dissolves after some time. What I also noticed and what they say is that you can guide bloodflow a bit with the breath. Like "breathing into specific bodyparts" or imagining/feeling that the energy goes there. Maybe you can do one experiment and do the breath-hold but with a full lung this time. Only for 15-20 seconds and try to mobilize the pressure and blood into the shoulders, arms and hands.
I'm sorry, I know that it sounds really wooey and it might only have a limited effect (I'm glad you do feel a change from it though so there is an effect at play), but I'm thinking it's free and it's a chance. Even if it helps just a little bit that's better than nothing.
That said, I cannot imagine how it must feel like. I've only had something in a thigh-bone that produced random pain (at times jolting pain, but usually 3/10), they were able to operate on the bone it and the pain is gone 99% of the time. I never needed strong painkillers, but I medicated way too regularly with weed. Specifically against the pain. I didn't know about the breathing then, I don't think it would have cured everything all the time, but I would have liked if someone had suggested it to me then. That's why I'm mentioning it again because I've heard and personally seen it work on different ailments, as the stuff is on the one hand about short term changing pain receptors but also connecting mind and body, feeling into the body, guiding energy, reducing chronic inflammation. Stuff for longtime well-being, which I sincerely hope might help.
No nothing new for prevention other than meds, I'm on 20mg of sildenafil citrate and Gabapentin for pain control and another med I cannot remember the name but it is to make my blood cell walls more pliable with the hope of improved circulation.
I know about lifestyle changes, i wear hats and mittens and try to keep warm all the time. I even wear mittens when when going into the fridge/freezer. This might sound strange as well but a few times a day, with my arm in a locked straight position, I rotate my arm quickly about a dozen times with the hope centrifugal force will force blood into my fingers. I also use hand and foot warmers in mittens, boots, socks and pockets. I have to avoid the use of vibrating tools, such as drills/saws/leaf blowers/push lawn mowers/electric razors.
I can't take migraine/headache medicine or nsaids, i end up with a bad petechial rash and blisters on the souls of my feet (odly this also happens when I fly at high altitudes)
I've also been working on meditation along with breathing control strictly for the reasons you mentioned "...or imagining/feeling that the energy goes there"
I smoke only weed no butts/vape, just for taking the edge off the pain, it does help reduce the sharp pain spikes that I feel in my bicep/chest/back of my knees.
I have moved to a warmer climate also, for over a year with no relief
Over the last 20 years dealing with this, this year has been the worse regarding pain, it's also the first time I've had to have fingers amputated.
Again, thank you very much for taking interest and your suggestions
@RussfromNH please take 10mins and try 1-2rounds of the breathing exercise and see if you feel something. I sincerely hope that it helps with your pain sensations, although I cannot promise it. It has helped a lot of people with chronic pain, it is being researched by scientific studies (the effect of the the thing on e.g. adrenaline, inflammation, chronic pain).
