My date with destiny came along last week. I had an appointment at the Pain Clinic on Tuesday 15th October to see my Consultant. The first appointment I've had with him since the long term problems with my right arm and shoulder began in March and more recently started in my left arm. We've suspected that it's CRPS at the root of it all but needed to have it confirmed or preferably ruled out.
I talked him through what's happened since I started getting shoulder pain when doing archery. On a practical level we've made major changes to my bow so that I now have probably the lightest setup it's possible to shoot with. The lightest riser on the market weighing just 530g, lighter carbon limbs, the sight and a 19" long rod. Any club archer will tell you this is a minimalistic setup. I could (and did) have a v-bar and twin rods as well as a much longer long rod. The poundage (how hard a bow is to pull) has also been reduced some 4 pounds. We've basically made absolutely sure that archery won't cause further injury. Giving it up simply isn't an option.
The shoulder injury healed but I was still getting problems typical of CRPS in my upper arm. Weight bearing was painful, moving the arm was painful. Don't forget I already take seriously heavy duty pain relief for my legs so an injury just shouldn't be causing such trouble some 3-4 months later. We were definitely in the realms of CRPS being the cause. The old enemy. My nemesis.
X-rays ruled out the possibility of stress fractures or frozen shoulder or anything else orthopaedic. It had taken about a month to get an appointment for the x-rays and results during which time I didn't use the arm much but carried on shooting as it didn't hurt. About the only thing that didn't! The range of movement decreased so as soon as I knew nothing was broken I took it upon myself to aggressively move and use the arm regardless of the pain, stiffness and difficult in moving it. I continued to push through the pain and got back a really good range of movement. l still had stabbing pains, all the other symptoms of CRPS. Mottling, freezing cold, boiling hot, on fire. Basically all the stuff my legs do. I was getting on top of it though and archery seemed the perfect 'weapon' to fight it.
The GP referred me for physio in July. This was an unmitigated disaster. We were initially really excited because, having examined me, he found a spot that was painful. Something might be wrong, it might NOT be CRPS!!! He gave me exercises and told me to massage the area several times a day. This caused a massive flare which left me unable to move the arm at all for several days. We contacted him and I was told to rest it completely. This just seemed to make it worse so it was a case of 'kill or cure' and I did archery. I had been told not to, but hey, it's my body, my pain and I suspected it would really help. Of course the archery improved things considerably. I went back and the Physio immediately decided to refer me to the Pain clinic because injury simply couldn't explain what was happening. More waiting during which time I continued the aggressive approach including as much archery as I could manage to keep the arms with the best range of movement that I could.
History repeated itself and during the time I was waiting to see the Pain Consultant the problems I was having with my right arm jumped to the left. He had a look at the X-rays from back in May(?) and they are all absolutely fine. No sign of anything like arthritis etc. He is going to send me to an orthopaedic surgeon 'because we should really, just to rule it out'. However it is CRPS in both arms. He said that I'm already doing all the right things. Pushing through the pain and keeping it moving to maintain mobility. I'm already on the medication I should be for treating CRPS so all I can do is just keep doing what I'm doing.
So where does this leave me? Well the first issue of course is that the limbs I rely on to support myself are now affected as well. There are huge long term implications for me. Should my arms ever get as bad as my legs then it's game over. That's scary. I don't mind admitting it. My quality of life is already absolutely rubbish with me essentially housebound, trapped in my chair in the living room 24/7. Without my arms I really would just be a useless lump in the chair. Just what could I do?
There are two huge stokes of luck that are in my favour. Firstly I already have CRPS. So I recognised the signs and was aggressively proactive. Refusing to stop using my arm despite the pain and repercussions. I have gone from waking up in the morning barely able to move my arm, (then arms) to where I am now. I now wakeup with pain, and stiffness but I am able to push through it and get back to full range of movement. Or as best I can! I can't do anything about the swelling, the 'shall I freeze today ' or 'roast today' that is CRPS's whim. Well I can keep a fleecy blanket close to hand and cover them as and when it's necessary. Not to the extent that I have to keep my legs covered constantly but it's using everything we've learned along the way and adapting it for the arms.
Secondly and this reaIly is astonishing, Archery. It seems to be the only activity that helps. Indeed when I shoot all the pain falls away. To the CRPS sufferer this is total and utter bliss. Sadly as soon as l stop back comes the pain, but it is less than it was. l usually get a couple of days 'respite' before the arms really play up again. So it's got to be regular archery for me. Gosh that is going to be really hard isn't it ;-)
Touch wood, I seem to be winning the battle in the arms at the moment. All because I know CRPS so intimately. Sadly lf I had known what I do now back in 2005 my mobility wouldn't have become so completely compromised. Sadly there are far too many people who get a diagnosis when the horse has already bolted and the damage is done. It's a sad indictment of the medical profession and the lack of serious research. I hope that changes and perhaps there will eventually be better treatments or even a cure.
But what now for me? Well, as ever I shall battle on, refusing to let CRPS get a bigger grip for as long as possible. Could I get it into remission? Will it eventually get the better of me? Who knows, but you can bet I will fight it every step of the way with every ounce of my being.....