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.....


  1. I am so sorry you are facing this latest setback, one step forward and two back is how it often seems with these progressive conditions that no one truly understands. The medical profession have their own way of doing things and won't deviate from that even of it seems sensible and time saving to do so, it's the system and we can't beat the system in all Its stupidity. You know your own body the best, you know your condition the best, you are living with it each day so trust your own judgement on this. Xx

  2. Definitely never keep a limb with RSD still! I had a big improvement of symptoms when my local orthopedist forced me to keep moving following my last hip surgery, which had forced the RSD from 1 leg to both and from moderate to severe in the original site (right leg, waist to toes). We were extremely cautious in *how* I moved, but we made sure I moved. I went for warm water physical therapy at the local rehab hospital. They keep their pool heated to 90 F and the air is in the 80's in that room so that patients never get cold. They would use a lift to raise and lower me into the water in the beginning, then after 5 months of therapy, my therapist taught me how to use the rail to get myself up the stairs. I did a total of 7 months of therapy and it was worth it. We got the allydonia back under enough control that I could wear my pre-op pants again (still no denim or rough fabrics, but more than just fleece). I find that whenever the allydonia gets really bad, being in heated water frequently helps immensely to get it back under control.

    I hope you guys find a good treatment plan that can help all 3 of your affected limbs.


Comments are always welcome....