This weekend is tough. It's exactly one year since I was diagnosed with RA after waking up in the middle of the night unable to bend my thumbs. I deteriorated quickly and soon I was in excruciating pain in my elbows, knees, wrists, ankles and feet. It has also affected my bowel and I now get terrible palpitations.
I saw my GP, he acted quickly and referred me to the hospital. I wait three months for an appointment. I was formally diagnosed with RA. I was told my bloods showed positive for anti-ccp and examination showed my joints to be swollen. So far so good. This is how it should be - but a year later I am in more pain than ever and have had no relief from the RA at all. My GP called me last week. He thinks quite rightly that my hospital care has been appalling. He has written a formal complaint and sent off a request for a second opinion.
It seems if you aren't a model patient who responds well to the mainstream dmards you are labelled a problem patient. The consultant has admitted the dmards have caused unacceptable (and in one case life threatening) side effects but the attitude of the RA nurses has been I should put up and shut up. Apparently it's annoying if your suffering man's they have to do their job.
The last appointment I had with the consultant they suddenly said that the pain in my elbows wasn't joint related as they have been repeatedly saying but it must be tennis elbow in the left and golf elbow in the right. Perhaps I had fibromyalgia as well as ans RA diagnosis and perhaps I just need gabapentin because I'm not going to qualify for biologics as my inflammation markers are normal. This told to me whilst they were laughing pushing the fluid around on my knee which I can't bend.
Both my GP and my occupational health consultant feel the hospital are flailing about because I am not a straight forward case. They both expressed astonishment and skeptism at the fibromyalgia diagnosis and rolled their eyes at the golf + tennis elbow rubbish.
They think it's an excuse as they can't get funding for the meds. The consultant admitted they wanted to give me biologics but I hadn't a hope in hell so they are now blaming me as the patient rather than their failing.
Are all RA departments this appalling?
In April they took me off all meds to hope "I develop some kind of permanent disability in my joints" at which point they will look again. So what happened to early intervention - oh yes only if you can stomach quite literally the methotrexate.
My grandmother also couldn't tolerate the meds in the fifities and ended up in a wheelchair as she was left to rot without treatment. I was reassured times had changed and things had moved on but they clearly haven't have they. I was told there were lots of options. It seems by this they meant three dmards....nothing else.
I'm getting to the point now that the pain is so severe I feel like jumping off a cliff and getting some peace from it. At the moment it's only my wonderful GP keeping me going.