Tuesday, 18 October 2011

Searching for the Holy Grail?

CRPS is a neurological disease where the sympathetic nervous system stops working properly. In essence either the nerves are firing off false pain signals to the brain, or the brain is mis-interpreting normal signals as pain. Either way your nervous system has turned on you and there's nothing you can do about it.

CRPS is incurable, and is very likely to be so for some quite considerable time. They don't actually understand how or why someone gets the condition. They don't understand how it works, so it stands to reason that any 'treatment' can realistically be little more than trial and error in the hope that something helps. I have a sneaky suspicion that CRPS sufferers are almost treated as guinea pigs for Doctors to try therapies on. Desperate for a cure they are willing to try anything no matter how invasive and regardless of whether it may actually make things worse. Hence the 'Holy Grail' title of this blog. In reality all that can be offered is palliative care, essentially trying to improve your quality of life.
What makes the situation even more complicated is the fact that some things work for one person, reducing the pain and associated symptoms. May even get the person into remission. The very same treatment may have a reduced effect or absolutely no effect on someone else. Unfortunately I fall into the latter category in that nothing (TENS machines, nerve blocks, infusions) has really touched my CRPS. It was and has remained aggressive, having spread from the right foot to the left and moved upwards. It has also affected other areas which I won't disclose after a normal procedure which women have routinely. As I've said in a previous post my Pain Consultant has admitted that there is nothing more he can offer me. He did say he would fit me with a Spinal Cord Stimulator but was honest enough to say that he didn't think it would do anything and certainly couldn't guarantee it wouldn't make things worse. His opinion about the way forward, or rather lack has beeen confirmeed by two further distinguished Pain Consultants.

I am pragmatic enough to accept the lot that I've been given and do everything I can to make the most of life within the significant limits the condition places on me. That is not to say that I have given up, I will fight this thing till my dying day. However I refuse to submit myself to invasive, highly unpleasant or possibly experimental procedures which at best only have anecdotal evidence that they 'may' provide some additional relief. If and when a cure is found I will be the first in line believe me!!

Some reading this may think I'm absolutely mad. Why on earth am I not travelling anywhere and trying everything to try and find something to alleviate the terrible symptoms I suffer? Searching for a treatment that will take the pain away and give me my life back?

Perhaps it's the Physicist in me, or perhaps it's because I am a cynic at heart ? I don't know. What I can say is that I would rather live as I am than submit myself to something that could make me worse. The probability of success simply isn't high enough to risk it. Take a spinal cord stimulator as an example. An invasive procedure involving having wires attached to the spinal cord with a box which sends electrical pulses intended to interfere with the pain signals and block them. A TENS machine is an external version of the same thing to all intensive purposes. It did absolutely nothing, at any setting from lowest to highest. A nerve block (different way of going about the same thing) did absolutely nothing. Factor in the possiblility of something going wrong, the wire moving, my pain being made worse etc. It doesn't take a great leap to understand why I won't be going for it or similar procedures.

I take a large cocktail of drugs, many intended for other illnesses which work together to try and reduce the pain and swelling, increase blood flow, thin the blood, try to help me sleep, dampen the nerves, reduce the muscle spasms and so on. The full list reads as 40mg of slow release morphine taken every 12 hours, baclofen (used in the treatment of MS), clopidogrel, omeprazole, nifedipine, clonazepa, diclofenac, co-dydramol or co-codomol (codeine metabolises into morphine so gives a boost without the extra side-effects), amitriptyline, fluoexetine, quinine bisulphate, bisacodyl, lactulose.  It's like a jigsaw, all adding up to the best relief we can manage. I also take Milk Thistle and Acai Berry supplements to help my body cope with the drugs.

Having had CRPS for nearly six years, I know it all too well. The medication coupled with a whole host of strategies we have worked out over time serve to manage the condition as well as we can. By any normal measure of quality of life, mine is awful. The alternative is to constantly seek out new specialists and ever more obscure procedures in the hope one will help. I couldn't cope with all the waiting for appointments, the travelling involved in getting there (eg Bath), the stress and worry having whatever it is done, staying in hospital etc.

No, I shall continue as I am and wait for someone to find the Real Holy Grail for CRPS, namely a cure....

1 comment:

  1. So well put. I believe CRPS and other forms of chronic pain result from the disruption of the brain and nervous systems ability to regulate and balance all of the sensorimotor functions of the human being. Chronic disabling pain has so many undiscovered aspects, and much of it is simply ignored by the medical profession. I believe chronic disabling pain results from a "Dys-regulation" that defies our current abilities to measure.


Comments are always welcome....