23/02/2009

What is this?

I've had joint issues for as long as I can remember.
I say joint 'issues', because I use the word 'issues' to mean almost anything - last year in maths I had polynomial issues, I have rejection issues, I have drug issues (not the ones you think!)
I also say 'issues', because I have no diagnosis.

I first visited my GP on the subject in 2007. He thought there was nothing wrong, but ordered a blood test. The results showed positive anti-nuclear antibodies (ANA), and I was referred to a rheumatologist.
The rheumatologist prescribed Naproxen, which made me sick, and did not help with the pain.
Then, I was prescribed Meloxicam/Mobic, which didn't make me ill, but also didn't help with the pain.
A visit to my GP resulted in a repeat prescription for codeine, and that's the way my medication has remained since.
My rheumatologist initially gave me a diagnosis of Juvenile Idiopathic Arthritis, but after the NSAIDs did nothing for me, and my bloodwork failed to show elevated C-reactive protein or SED rate (inflammatory markers) he retracted that diagnosis, and washed his hands of me.

The problem I now face is that the pain is getting much, much worse. It is beginning to limit my mobility and ability.
I do not go a day without pain.
The codeine does not take the pain away, it barely takes the edge off, and the side effects are too bad for me to take much of it - constipation, nausea, drowsiness, rebound headache.

So, here I am. I deal. I realise that because my bloodwork shows nothing of consequence, my rheumatologist is a first-class dick and my family does not support me, visiting my GP would not improve my situation.

However, I have support. I have friends, and I have the Hypermobility Syndrome Association (link to the right). I have chosen to accept that I have what my friends and I refer to as 'Wonky Joints', which is accepted amongst all the people who matter.

1 comment:

elise said...

Hey JH,
Your story is not uncommon. You might want to explore the idea of Ehlers-Danlos Syndrome. There is a UK support group and one in the US that you can also join. The US group is Ehlers-Danlos National Foundation (though it is really international) www.ednf.org Check it out and see if the description sounds familiar to what your symptoms are. I bet you will find your diagnosis there and won't have to wait until your 30s, 40s, 50s to find out like some of us did! You are not alone.