So, I FINALLY had my appointment with the pain clinic.
It was really useful and interesting. The doctor totally understood my issues. I never felt belittled or like I was waste anyone's time. That makes a change, to be honest.
I knew there wasn't really anything that could be done for my ON, but needed some help for the awful scar I still have. It doesn't look any better than the last photos and it is just as painful, itchy and annoying. My GP had tried to get funding for steroid injections but was turned down because of cost. I was going to go down the private route to get it, but the pain clinic have created a plan.
He is referring my onto the clinics physios, as I mentioned I saw the community physio once, and have some exercises to do, but he said these are specialised and would understand more about what is suitable for me to do to help my shoulder and upper back pain.
He then went on to suggest a medicine/drug that I haven't tried before, duloxetine. I double checked that it doesn't cause weight gain, can't have that with my wedding so close. I have to wait for my GP to get the letter from them and then I will get it from there. It is a nerve pain drug that should help both my ON and the scar pain, as apparently that pain is neuropathic too. The incision has caused some nerve damage that is causing the pain. That's the first time that has been mentioned but it makes total sense.
I just wish I had been referred to the pain clinic years ago.
He also suggested that after a while of that, to use a capsicum (chili) cream to rub on the scar to help the pain. It will work like a distraction. It can be used as many times as a day as you like.
Then the plan is to see how that is going and if it isn't enough there are options of patches that are put on for half an hour at the clinic or even after that to try PENS, much like I had for ON, to help interrupt the nerve that are cause the pain. He suggested this as it won't damage the skin around the scar. An injection, such as a steroid injection, could cause more keloid scar tissue to form. I learnt such a lot is so little time.
I then had an examination. He used a piece of cotton wool. First he touched it to the inside of my wrist to show me a normal sensation. Then rubbed it across the scar, then the same area of my chest but the left hand side. I had to describe the feeling across my scar compared. It was like a rough Brillo pad had been brushed over my scar rather than a soft cottony feeling. He then did the same with a small blunt needle. The feeling over the scar was REALLY sharp and the sensation stayed there for a long time. The pain clinic nurse was the one to ask about if I could still feel the sharp feeling. She knew all about ONS which was nice to know. I felt 'at home' where people understood me.
So now it's just to get that first prescription and see how things go, I guess.