My appointment at UPenn with the physiotherapist Dr K recommended was excellent. I had read about him prior to the appointment - he has a great reputation and an impressive CV with lots of publications and he was highly recommended by several people, so I was really optimistic about the appointment. I was not disappointed.
He was very thorough, examined me, tested my movement - FELT my muscles and my movement more than looked at it -, asked lots of questions and spent a lot of time answering my questions too. He thinks I have an ongoing nerve injury called brachial plexopathy. This is something that has been discussed before. Although my nerve tests ruled out tears or avulsions (a good thing) other nerve injuries such as overstretching might not be detected. He said that my symptoms and movements fit with other patients he sees with this injury and he did explain a lot of that to me. It really made me feel better to hear that he recognises these symptoms and that he thinks they will improve.
And, as I am now well aware(!), I did a lot of damage to lots of different muscles and tissue and it is all going to take time to heal. However he said that looking at me he does think that this will get better. My physio I saw in Scotland, also a great physio with years of experience (even although he has never seen a detached rhomboid & trapezius before) said almost exactly the same thing. To me, it almost seemed like an instinctive knowledge, something gained only through years of assessing injuries and assisting recoveries; but they both said it the same way - this will be hard work and it will take a lot of time, but what they see makes them think I WILL regain function again.
I have to focus on reducing my pain and not aggravating my shoulder right now. I have not to try to stretch it out or build strength or movement, or to do anything that could irritate the nerves and make them crazy. I have some exercises to do that will maintain the movement I have and stop my shoulder seizing up or getting any tighter, but the focus is on calming things down. Enabling healing.
I've been saying for ages that I'm sure I will feel much better when I can work hard on my exercises and know that I am doing everything I can to build up the muscles and increase my strength again. It is much harder to realise I am still helping it by doing very little. However, I feel that it is the right thing to do. We get pain for a reason and so much of modern medicine seems to focus on fighting our bodies instead of listening to them and responding to that. My appointment really made me feel that it is ok - more than ok, important - to really listen to my body and to be guided by what it tells me.
The physio spoke a lot about "unconscious movement" and how the body will do that when it is ready; right now it is protecting itself. That really makes sense to me - I have been trying so hard to make it move and to do things as normally as I can, but it all feels like a constant struggle. Taking that pressure away and paying close attention to how every tiny movement FEELS is definitely making it feel less aggravated.
My TENS machine is helping with my pain - for the first time since my surgery, I really feel as if I have some adequate pain relief. The pain returns very quickly when the machine stops (time to change the batteries - I am saving the planet and using rechargeables!) but I can use it as much as I need it (as long as I move the electrodes about regularly) so it's fantastic!!
I also had some good discussions this week with my regular physio (who was so brilliant he came to the other appointment with me - that was so helpful and very much appreciated!), my neurologist and my Lyme doctor. All of them feel that the RSD/ CRPS diagnosis is not really the answer to everything (with varying opinions on RSD itself as a diagnosis, definitely a discussion for another day) and that I do have associated symptoms, but they are because of my injury and they will heal with time. Much more positive, and I feel much more optimistic about things now.
I said to my Mum, "The information I got from that doctor in Kentucky really wasn't good, it could have been psychologically damaging for some people." Mum said, "some people??!" Oh well, at least I feel I can move on from that now!!
"If you're going through hell, keep going."
~ Winston Churchill