I'm prompted to write this post because of the way a good friend who also has CRPS is currently being treated. It raises wider issues for any of us who are chronically sick. The contempt with which medical staff treat people is disgusting especially when the interventions they are doing are experimental, untried and have uncertain outcomes.This may well be a bit of a rant but I feel so angry about it.
My pain consultant and I have a great relationship. We discuss everything. He knows I will ask questions he most likely wont be able to answer, but is secure enough in himself to admit when he has no idea. Or he thinks about it and comes up with the best answer he can. He realises I wont accept flannel and also have read widely about 'treatments' be it medication, or more invasive techniques. It is refreshing to feel that it is a partnership rather than being told what is going to happen. The sole purpose is to produce the best combination of medications which give the 'best' relief with the fewest side effects.
At the moment we agree that we have reached the optimum. I really need his input into what's currently happening to my arm and fingers. What he feels is the best way to fight the ever encroaching CRPS.
In contrast my GP doesn't understand CRPS and spends all his time trying to reduce my medication as he doesn't like me being on so many. He is right on one level of course but doesn't see that they all work together to counteract the various issues CRPS causes. He will prescribe whatever the consultant asks so it isn't an issue. I see the consultant every 6 months (ish) so my care is ongoing.
we tried a nerve block years ago, together with infusions which did b****r all and TENS was utterly useless. He's offered me a spinal cord stimulator (SCS) but admitted that the chances of it doing
anything were remote and more importantly that he couldn't guarantee it wouldn't make things worse. I am grateful for his honesty especially as I haven't heard a single success story where SCSs are concerned. Which Is where I turn my attention to CRPS 'treatments'
I have regularly stated in this blog that there is no cure for CRPS. They don't even know how it works for heaven's sake! As such 'treatment' is an anathema. Palliative care is all that's available. Unfortunately the pain consultants in this country seem obsessed with nerve blocks and SCSs as 'treatments'. Once medication fails to provide decent relief (and with the best will in the world they don't do much) their next stop is to recommend nerve blocks and then a SCS. There are other therapies available such as Calmare in the USA which has reported good results (and is non invasive) but the chances of getting it here are remote. You could be thinking 'what does she know?' and to a certain extent you'd be right. I have no medical training but I do know CRPS intimately. As such I am as well placed as anyone else to discuss the pros and cons of managing the condition.
The biggest problem in this country is that diagnosis takes forever. This is the worst possible thing you can do as not treating it aggresively in the first three months greatly reduces any opportunity of getting it onto remission and makes it so much harder to keep the symptoms even vaguely 'under control'. Take my arm, it has been causing me grief since March and as I write this I am no nearer getting to the Pain Clinic than I was back then. Were it not for the fact that I have been aggresively using it despite the pain and doing archery which remarkably seems the perfect therapy I can guarantee I would have lost much of the range of motion. Instead I still have full range of movement. It hurts badly, as well as showing other symptoms of CRPS. It isn't cured of course but it is under control. No thanks to the NHS. Purely because I know my foe, can lock horns with it and know how to fight.
Anyway I digress. Invasive 'treatments' such as a SCS are terrifying unless you are backed into a corner, wracked with pain and everything else that CRPS throws at you. Utterly desperate you'd try anything. I wouldn't but lots do. They sell it well. The SCS is fitted to the spinal cord and sends small electrical pulses down the nerves to the affected limb which interfere with the pain signals the nerves are sending. Result? Greatly reduced pain. Plus you can change the intensity of the pulses using a remote control depending on how bad the pain is. Sounds good doesn't it? A TENS machine is supposed to do a similar job but isn't invasive. Pads are placed in critical positions on the back and pulses are sent. My first question is why should an SCS do any better than a TENS machine that does nothing? Especially when they don't actually know for certain that this is the way CRPS works. It could be the brain interpreting the messages wrongly rather than the nerves sending pain messages.
Secondly, who in their right mind would allow a surgeon to place electrodes directly into the spinal cord and then tweak the voltage being fired down the nerves until an optimum is reached? Scary stuff with absolutely no certainly of success and worse, no guarantee that it won't do any harm. Now or in the future? What if the wires move? I am pragmatic enough to not reach for the 'Holy Grail', accepting that nothing has or is likely to touch my CRPS. Sadly there are so many who grasp the opportunity only to live to regret it at a later date When it does nothing or even makes things worse.
The worst thing though is that people are used as guinea pigs. I find it questionable what the actual motive behind implanting the SCS is. Are they really doing the best thing for the patient or is it more to do with gaining more data for themselves? Regardless of the poor sod who maybe worse off than they were before. Take my friend. He was fitted with a new version of the SCS. He has been in hospital over a week and at least part of the problem is his SCS. Their solution? Implant another one, see if it's better and then switch the other off. Really? Are they serious? Worse they haven't discussed this with him, seemingly intent on going ahead regardless of how he might feel.
This makes my blood boil. There are other examples of things being done to CRPS sufferers, with little discussion. Inappropriate physio that results in flare ups is another one. We seem to be guinea pigs to them, they don't understand it and are just trying things to see if it helps. CRPS is bad enough without tinkering that makes things worse. Most importantly though Doctors need to take into account the feelings, concerns and wishes of the patient. Only palliative care is realistically available. Of course we all want a cure but surely it's a no brainer that any intervention should be driven by patient need. Not given to see what it any effect it has.....