Wednesday, 17 July 2013

Peering into the abyss...

Our worst fears have been realised.... it is CRPS causing the ongoing problems with my arm.

The most recent photo of my arm
I went to see the Physio again on Monday, armed with my pain diary and several photos we had taken during the time since the massive flare caused by the exercises/massage and the appointment.

The photos had been a huge shock to me, because I can't actually see the side of my arm, so had no idea just how bad it was. The symptoms of CRPS were clear to see. Swelling, colour and temperature changes plus a shiny sheen to the skin. Add this to the throbbing pains despite 50mg of morphine flowing round my body 24/7 and it was pretty damning. The Physio confirmed it, saying there was no way the symptoms could be explained by an injury. Especially as this has been going on since March if not earlier. Where we thought he'd found something wrong, the reaction to the treatment was over the top in the extreme.

He is going to write to my Pain Consultant urgently to refer me and hopefully they will get me in quickly. Not holding my breath though after being told I'd have to be referred as a new patient when I contacted the Pain Clinic direct (see previous blog post). I can only hope that I bypass the new patient pre-assessment for which there is a huge waiting time by virtue of the fact that the Physio has already examined, tried to treat and diagnosed CRPS in my arm. I do have the certainty of seeing my Pain Consultant in September/October as I see him every six months. Even this means yet more waiting, time which I can little afford to lose. If you stand any chance of getting CRPS into remission it needs aggressive treatment within the first three months of it starting. Anything after that and you are starting to fight a losing battle. Which is why my legs are as bad as they are. I was nearly six months before we got a diagnosis and it had already moved into the other leg and up to the knees in both.

Of course the difference this time around is that I know my enemy intimately. I am already taking appropriate medication for CRPS because of my legs. OK, they don't do a lot but any help is better than nothing. The critical thing in fighting CRPS though, is to keep the mobility, the range of movement and the use of the affected area. So much of the time before my legs were diagnosed was wasted, I was told to rest as they didn't know what was going on. Totally the wrong thing to do, as I now know to my cost. Every moment of rest let CRPS get a little worse, increasing the pain which in turn made it ever harder to do anything with my legs. I can't push through the pain at all, it is just too bad. Being realistic, the CRPS was so aggressive in my legs I doubt we could have kept it at bay, restricted it to one leg or stopped it moving upwards. But there would have been a chance, however small.

Which brings me back to my arm. Ever since the x-rays came back clear in late April/early May I worked really hard and got back the full range of movement in the shoulder and upper arm. Purely and simply by doing things with the arm regardless of how much it hurt. Pushing through the pain, refusing to let it stop me. Of course the pain never went away, it was and is always there in varying degrees but when I first saw the Physio he was extremely impressed with the 'superb range of movement' I had.

With the benefit of hindsight, trying to treat a problem with the deltoid tendon was the worse possible thing we could have done. After a few days I couldn't do anything at all with the arm, it was horrendous. It felt like I'd lost all the strength. I couldn't stretch it out sideways, forwards, lift it up or anything. The pain was completely off the scale, Oramorph didn't help, I could do absolutely nothing for myself. It was like a massive CRPS flare, which, looking back, is of course what it was. The exercises were stopped and I was told to completely rest it. No archery, no moving the arm above shoulder level. For the next day I could do nothing else but rest it and it settled a little. Me being me, over the next couple of days I had to gently try and move it a little bit. And then a bit more. I started to get the strength back (which of course I'd never lost, I just couldn't use it because it hurt too much), could lift my iPad up for example which is on the table next to me and it was a bit better when Eric helped me out of my chair (I push up whilst he pulls).

Of course I had to do some archery, if only to see whether I could still do it. So a week after stopping the exercises I shot two dozen arrows. Completely pain free! It was a wonderful feeling and seemed to improve the arm if anything. Meanwhile resting it just increased the swelling, the colouring and of course the pain in the arm. Should I do as the Physio advised and continue to rest it completely or do what I felt I should do, namely keep it moving? Of course I did what felt best and so worked on pushing through the pain as I had before. Which is where I am now as I write this. The arm still constantly throbs, becomes worse when it's moved and recently hurts more when exposed to airflow (not very helpful when you have a fan on because it's so hot).

The reality of having CRPS in a third limb has sunk in a bit and I'd be lying if I said I didn't feel a bit fearful of what the future will bring. What if it continues to get worse or moves down the arm? Moves to the other arm? Life is of course going to be harder because I can't support myself as I could, I am ever more dependent on Eric. I am more restricted in what I can do, for example gardening. I used to do loads of stuff in the raised beds, will I still be able to carry on doing that? I worry even more about my weight because I am less active than I was and can't see a way of doing anything about it. Using the Wii to play tennis is out, too much for the arm. I can't believe my luck that archery seems to be the perfect activity but how long will that last? Will archery become impossible at some point? When I eventually get to the pain clinic will they be able to do anything with the arm (nerve blocks etc) bearing in mind everything failed miserably on my legs?

I could go on, but what's the point? It doesn't make my situation any different, so it's a waste of energy. The future will bring what it will. No, I have to concentrate on what I can do now, the positives. Continue to push through the pain, fight to keep the function I have in the arm, the range of movement. It will no doubt flare just like my legs do, but since when has that ever stopped me?  I will do everything I possibly can to keep the CRPS at bay. Continuing archery is a given. Of course!
Come on CRPS, do your damnedest!!!

Wednesday, 3 July 2013

You cannot be serious!!!

So angry, so frustrated, so dejected. Those are a few of the emotions I'm feeling right now.

I had emailed the Pain Clinic again after their less than helpful response on Monday. They phoned me again. It is with disbelief that I heard her say that my arm is a new condition so they cannot get involved. Indeed, 'they would be doing me a disservice if they gave advice about my arm'. So if I want the Pain Clinic to provide advice etc I have to go to my GP and ask for a NEW referral to the Pain Clinic. She even said 'IF your GP thinks it's appropriate'. The final body blow is that I would have the many months wait (as a new patient don't forget) to even get to the pre-assessment clinic. I enquired what happens then. 'Oh, then Dr Naylor would take over the care of your legs and the arm together'. What the f**k? Sorry I never swear but REALLY?

I queried the fact that surely as CRPS was suspected (as the Physio does) then it would be a good idea to treat it early? Surely the level of morphine (50mg) plus Oramorph (+10mg as needed) I take isn't normal for a sports injury? Plus it is of course the same condition, CRPS. Apparently not. To all three...

Physio rang as promised. I talked through how the arm has improved. He was pleased that I was in less pain and has told me to rest it completely until I see him on 15/7. This includes no archery and I am not allowed to raise the arm above shoulder height. How on earth is that supposed to work when I rely on my arms to support me? Or to hold onto Eric to pull me out of the car etc? No stairs, not bath (if I could get there) even poorer quality of life than ever. 

I feel stuck between a rock and a hard place. A further two weeks to wait to go back to the Physio. See what he says, and try more exercises presumably that may or may not cause a flare. It is obvious that intervention causes a drastic decline in mobility and exponential increase in pain. When/if can I say no at some point?

Obviously I'd much prefer it to get better, but I've had CRPS long enough to know the signs. Anyway having exhausted the Physio I land back at the GP with a what do we do now? Perhaps a god knows how long wait to have an MRI scan? And finally, after everything has been exhausted we come to last in the list, being referred to the Pain Clinic. As a new patient of course.

I frankly don't care about the pain as long as I can continue to do archery. I live with pain, more doesn't really make much difference to be honest. The exercises really screwed up my arm although it is improving well and I am deeply concerned that as time goes on the chances of me being able to continue with archery become slimmer. It terrifies me in fact. Anybody who treats CRPS will know you have to treat it really aggressively in the first three months. I have been pushing through the pain, improving the range of movement myself (which the Physio himself said was superb) . It's been working and now I've 
been pushed backwards. 

Do I rest it completely? Do I keep it moving? If I don't it worsens, and it will be harder to get that back. Eric has already pointed out that archery doesn't involve raising my arm above my shoulder, bless him.
I suspect that I will do archery at some point, if only to reassure myself that I still can. It always loosens e ery thing up anyway. The fight in me tells me to do it my way. 

What's that saying? Something along the lines of, if adapted to fit the situation, 'to beat CRPS, you must become CRPS'. I already have it, who better to keep it at bay, or at least in it's place!! Ah, not all negative then.....