About two weeks ago, I had a really bad flare-up. Years of RA has left me with damage and a certain level of pain all the time, but this was really off the scale. I had to beg my GP receptionist for an appointment for the following day. They have a policy of only giving appointments at 8.30 for the same day. I pointed out that that meant that theoretically a hypochondriac could be lucky and get an appointment every week and people who had chronic conditions might never get to see their GP even though it was supposed to be part of their treatment. I told her that my jaw was seizing up and I could no longer use a teaspoon to eat. In the end she reluctantly made me one for the next day emotionally blackmailing me by ending the call "I'll probably get the sack for this."
I saw the GP last Tuesday but they don't store any real information at my surgery, so he had almost no information on my medical history. I explained what was happening and said "I need a steroid injection immediately because the flare up will not let up without it, risking permeant damage on top of the damage already there." He said he only had experience of giving them into joints. I said "this is far more complex and many GP's are not trained to do this so if you can give me a steroid in my knee you can definitely give me an 'overall one.'
He said "I'm happy to give it but I need your rheumatology clinic to fax me some information, the dose etc" So I got straight onto them or rather my partner did. He was passed back and forth. My nurse was on holiday so finally another agreed to send a fax. My partner called first thing Thursday morning and was lucky enough to get me an appointment that day without having to resort to begging.
I went in but......the fax hadn't been sent. I told the GP I wasn't leaving without the right treatment and would wait in the waiting room to complain to the practice manager about them having absolutely no medical history worth mentioning on their computer system. The practice manager came out less that fifteen minuets later and said they would give me a steroid injection right then. They did. The practice manager then saw me in his office and agreed that they needed far better communication with my specialists and should have my medical history available.
The injection worked to a point. My jaw improved and whilst it still has past problems I can open it to eat. (Although my appetite is non existent which is almost unheard of for me.)
I still have more pain than normal in my left knee and I know it's heading for another steroid (noooooooooo! lol. They are dreadful but they do usually help.) But my left wrist is horrific. It often feels as though a rat is biting it, but this is constant and far more severe and I can't lift up my quilt with it without my splint.
My splints are not really helping. I bought them myself. They are not as firm as NHS ones but they gave me the flexibility I needed. I looked in Boots for some firmer ones but they were absolutely huge (I have child-sized hands). I spent £50 on a resting splint but it is far too big even though it said small. It came with no instructions and seems to require you to put your hand in a position which no-one could achieve even if they were double-jointed.
Sorry for the long post.
So for those of you who haven't dozed off reading this.....I have taken my tramadol which usually works wonders but hasn't touched my wrist today. I can't get hold of anyone from rheumatology, not that I ever can. My GP surgery are no help and I don't know what else to do.
Every day this goes on my wrist is changing shape. I can see my wrist deforming before my eyes. That sounds dramatic but we know how fast RA can damage smaller joints. I don't know whether I should go to A & E. They can't give me anything to stop it but they might be able to give me some better splints or strap it up (probably not a good plan) until I can finally get some advice from rheumatology.
I can't plan when my flare-ups occur. It feels as though I am just a big inconvenience. We are told don't wait when you have a flare-up, act quickly but I am trying and no-one seems bothered.
Should I bother A & E ? Or wait indefinitely for rheumatology? Has anyone gone to A & E for their RA? In the lifetime I have had it I don't think I ever have.