Time to change the pace and topic a little.... Time to talk about my 20 year battle to get a diagnosis for the joint pains I have been experiencing since I was around 15.
It started off fairly innocent enough. I began to find that after doing my skating, martial arts or running that my hips and knees seemed stiff and slightly swollen... I just thought that I had been overdoing everything and that I needed to slow the pace a little. I cut back on the skating and the running but kept up with my Tukido classes. This seemed to help and the joint stiffness in my legs eased off, for a while...
On and off over the next few years my hips and knees would become stiff, painful and swollen... At first I just took some pain killers and ibuprofen for the pain and got on with it. When I reached the age of 19 I spoke to my GP who suggested it was just growing pains....
After having my daughter at 23 I began to get the swelling and pain more often. By this time I had been taking ibuprofen daily to help control inflammation and paracetamol to control the jarring pain... My knees had started to grind when I was walking and my hips would sometimes lock into position causing the most horrendous stabbing pain when I moved. I had just moved GP's and made an appointment to see if they could help.
This time the GP took a look at my notes and suggested I had psoriatic arthritis. I was immediately put on relifex and headed home. The side effects of the relifex were awful... I started suffering the most horrendous IBS, was tired all the time and felt nauseous at the slightest mention of food. Back to the GP and onto diclofenac... He also referred me to the rheumatology clinic at the local hospital. The Diclofenac helped for a while, but my body seemed to adapt to it and it stopped being of any use. After speaking to my GP we decided to go back to Ibuprofen.
Cue my first appointment with rheumatology.... The specialist had a chat with me, looked at and manipulated my joints and pronounced there was nothing wrong with them!!
Between that appointment and 2009 I dealt solely with my GP. He was fantastic. He was annoyed that the specialist hadn't confirmed that I had arthritis and worked with me to go through the different anti-inflammatory medications and pain relief medications I could try to give me some relief. Once we had tried them all he sent me back to rheumatology... Guess what?? Yup!! Once again the conclusion was that there was nothing wrong with my joints!
In 2010 I had had some UVB therapy for my psoriasis which was great... my skin cleared up completely for 3 months... I went from almost 80% skin coverage to <1% coverage in 12 weeks of treatments.... That's when things started to get really weird... I was finding that I had a lot of pain and swelling in two of the toes on my right foot.. It was difficult to walk but I would struggle through. The swelling caused problems in that my shoes were all quite tight on my foot and there would be a lot of rubbing against the roof of my shoe.
By the end of 2010 my toes had deformed and could not be straightened even when forced... The joint nearest the knuckle was completely fused...
2011 was a huge year... I moved to a new home and had a wedding to prepare.. my dermatologist recommended a second course of UVB for my skin so that it was clear for my wedding day... I jumped at the chance.
As I progressed with the UVB I noticed that I was starting to get the feelings that I had had in my feet in both of my hands and wrists... I found I had reduced mobility and lifting was becoming uncomfortable. By the end of 2011 I was in constant pain and my hands were horribly swollen. Over the next 2 - 3 months I was put on every anti-inflammatory possible and every pain killer my GP could prescribe. I was signed off work for 2.5 months as I dealt with the side effects from the drugs and from the pain, things that I believe worked against me when there were project cuts at my place of work.
After spending 3 months feeling like a zombie I finally got another rheumatology appointment. This time I was seen by the consultant specialist.. He took my history, looked at my joints and performed an ultrasound on my hands and wrists. Both he and the trainee doctor were horrified at the amount of inflammation and fluid surrounding not only my joints but also my tendons. His reaction was immediate!!
A couple of steroid injections to help until I could start taking Methotrexate (after liver function & full blood count tests and a barrage of xrays) and I had a confirmed diagnosis of Psoriatic Arthritis... Only 20 years after first having symptoms!!
The injections helped long enough for me to function until the all clear came through and I started my first dose of MTX. I still take my naproxen but after the initial dose of MTX I find they kick in sooner.
The rapid deterioration of my joints got me wondering, did having the UVB therapy in some way contribute to a worsening of my arthritis? After all, Psoriasis/Psoriatic arthritis are caused by an auto-immune response where the TH-1 cells do not recognise cells of our own bodies as friendly and attack them... Did the reduction in my inflammatory skin condition cause the internalisation of the auto-immune disease? They had no skin patches to attack but the joints were free from the UVB radiation and therefore cytokine storm involved in inflammation would have been stronger there.
Something for me to research I think... Would love to hear about the experiences of others out there.
So, in a nutshell, after 20 years a 10 minute appointment has changed my life.. Sadly most laboratories will not employ someone who is classed as "immunocompromised" due to an increased infection risk so I have had to re-evaluate my career... I have decided to head back to my prior career in accounts and study towards becoming a chartered accountant. I'll still keep up to date with scientific breakthroughs and research, just not from the inside!!
