I had my appointment at the Pain Clinic yesterday. My rheumatologist organised this, and at the time I felt he was washing his hands of me.
He told me he wanted a second opinion on what was causing my pain…he can’t get passed my mostly good blood work, even though it was he who explained to me that many people have seronegative Rheumatoid Arthritis, and relatively normal bloodwork.
Usually, so the theory goes, seronegative disease is mild, but this is not the case with me. I haven’t responded to any treatments except prednisone, so its easy to look at my clean blood and non-visibly damaged hands, and forget all about my ultrasounds and bone scans which show inflammation, synovitis and joint effusions.
His conversation was getting dangerously close to ‘it’s all in your mind’ which for me is a red rag to a bull.
He again explained that my pain might be caused by Fibromyalgia, rather than Rheumatoid Arthritis.
He has since sent me a letter making an appointment at the Biologicals Clinic. So he clearly has had second thoughts. That appointment is not until January 30th, 2013, but because of its existence, I have been inspired to ‘toe the line’ and follow his treatment plan.
Let’s face it, I need him.
So. I have tapered down to 7.5mg or prednisone and dropped my Naprosyn to 1000mg per day.
Life is horribly painful. This post covers what an average day with rheumatoid arthritis feels like.
It is very, very hard living with this pain when I know that if I up my prednisone to 15mg per day, about 50% of the pain will go away. My joints will cease popping and grinding. I will move more freely. I will be able to jog sometimes and work out at the gym.
But if I want any chance of getting onto a biological Dmard – very hard to qualify for in Australia – I have to do as my rheumy says.
So off to the pain doctor for another opinion.
He was a good doctor. He asked all the right questions, and listened to my answers. He assessed my joints, and asked exactly where the pain is and asked me to describe it.
He explained there are two main types of chronic pain – nociceptive pain and neuropathic pain. Both have very different causes, and respond to different medications. Rheumatoid Arthritis pain is nociceptive pain. Fibromyalgia is neuropathic pain.
Fibromyalgia often co-exists with Rheumatoid Arthritis. Some doctors even misdiagnose Seronegative Rheumatoid Arthritis as Fibromyalgia, just because the blood work is clean. The two diseases are very different, although they do overlap and co-exist.
Anyway, I asked the pain doctor where he thought my pain was coming from and he felt it was quite clearly nociceptive pain caused by inflammatory arthritis. He felt that my pain has been undertreated for many years, and that if we could get my pain under control, my quality of life would improve.
Sure, I agree totally. The less pain the better as far as I’m concerned!
And I must admit, I haven’t wanted to take large doses of narcotic medications to control pain, so I am at least partly responsible for the undertreatment. I have often prefered to ‘tough it out’. I don’t want to be a functional addict. Or potentially a non-functional addict. I have spent weeks at a time on slow release morphine, and ultimately I always stop the morphine and prefer the pain to the nauseous zombie I become.
I much prefer prednisone, which while the side effects may be potentially disasterous, actually deals with the *cause* of the pain – the inflammation – and reduces it.
Opioids only mask the pain, and they don’t take it all away. They only dull it somewhat. And I am experiencing a need to take higher and higher doses of oxycodone to deal with the pain. I am now taking four times the dose I was taking six months ago.
And my pain is not under control.
So the plan of attack? A pain patch. The strongest one available – norspan (buprenorphine). It’s a seven day patch. It will reach steady state in three days. The doctor warned me that the first day I will probably feel nauseous, dizzy, and sleepy. All the things I hate about opiods. He asked me to persevere.
I don’t like this plan.
I want to up my prednisone and just stay there. I will risk the consequences. A semi-decent life now is more important to me than a healthy, old age. A healthy old age was off the table five years ago, whether I realised it or not.
But I need to do as the doctors say. They hold the power. They are the gatekeepers to biologic therapies. The ones that could change my life. Or not work at all.
I think I have a right to access every therapy that’s out there…but there are hoops to jump through. And so I will try the pain patch. I fill my prescription this afternoon, and will slap it on my arm tonight.
In two weeks I will see my third opinion rheumatologist. She may offer a quicker pathway to biologics, or have another treatment option. So I will try the pain patches for these two weeks and see how I function.
I suspect I won’t be able to go to the gym – which I can do on prednisone. I suspect I won’t feel very good at all. But I shouldn’t prejudge. The patches are supposed to be better than the oral drugs. But I will just have to wait and see. Again.
Hurry up and wait…