So about 7 months ago I started to notice that the pain in my shoulder wasn’t getting better and I was starting g to struggle with some movements. I kept an eye on it and after about another month went to my gp as I thought it was an impingement. After he pulled me about the pain got significantly worse and by the time I saw the physio I’d lost a lot more movement and was struggling with it badly.
The physio decided I had a frozen shoulder and did the thing where they put you in screaming agony to stretch the capsule - I could have punched her but it did help and I was getting better movement by doing the stretching exercises she’d given me. At that point as long as I stretched first I could still do up my bra and my stretching up movement was pretty good. A month later I got hit by dysentery and was in bed for 3 days and couldn’t do my exercises for a week as I had no energy at all. Next time I saw the physio the movement was worse again and I was in more pain.
After she did some more stretching my movement improved slightly that day and then just went downhill from there. The exercises got more painful and I now can’t get my arm behind my back at all. No chance of doing up a bra, can’t put my hair in a ponytail, can’t put on deodorant as can’t move my arm away from m body enough and my upward movement has now gone totally as well. Over the last few months the pain has been unbelievable - and us lupies are generally pretty used to and good with pain. I’ve been on high levels of codydramol and tramadol to try and sleep but they’ve not even touched it. The physio decided she was just causing me more pain and sent me back to the gp for a steroid injection referral.
To speed it up my lupus nurse dealt with it for me rather than the gp and I went in this morning to have the injection done with the team they work with. He insisted on x Ray first which was clear and has done an injection into the back of my shoulder up under my shoulder blade which will hopefully help.
Anyway what was interesting was that he had two student doctors in with him learning - they were fascinated talking to me about the photosensitivity etc and I have them lots of input from the patients viewpoint (whether they wanted it or not - someone might thank me one day lol). While he was talking to them and showing them how little movement I now have he said it isn’t a typical frozen shoulder and is differentiated as it’s a lupus problem. I was just wondering if this is something common with lupus where the shoulder muscles get so bad that it causes the same as a frozen shoulder? I’m now not sure whether this is a frozen shoulder which will act similarly with the same treatments or whether it’s a lupus thing which will follow a different path. From the viewpoint of the pain and movement there’s little distinction but knowing what it isn’t helps me know what to expect from it and whether it’s something I should go back to my gp for to push for surgery if the injection doesn’t help or if it’s something rheumatology should be sorting for me.
Anyone else or is this me being a medical oddity again 😊