I was recently contacted by the Amy Kirsling, the executive director of a new organisation in America which is in the early stages of development www.crpsconsortium.org.
‘ The International Research Consortium (IRC) is a recently formed organization whose goal is to promote research directed at relieving the pain and disability, prevention, and ultimately, the cure of Complex Regional Pain Syndrome (CRPS) – a rare chronic pain condition.
Our members belong to over 50 research laboratories around the world. Here they can collaborate and compare findings to further CRPS research.
Amy Kirsling writes in an email to me:
“I am working with a few patient groups, one in Canada and one in the US to start what could be an online Q&A with members of the IRC. This is something we could possibly set up with people in Australia as well if you were interested. It is in the beginning stages but I believe this would happen on Facebook. I will keep you posted as things progress if you are interested.”
And I will keep you posted via this Blog to any progress in this area but I believe it will take time. I also believe that the IRC is an important advancement into the future of treating and perhaps finding a cure for CRPS one day. I have checked out the legitimacy of this organisation and I believe it offers new hope.
Now for the Seriously Questionable!
I have great faith in my pain management clinic to be up with the latest treatments for their CRPS patients. I have discovered that by following up any internet reports or newspaper articles about miraculous treatments for CRPS with a few Google searches that there is usually another side to these stories that is easy to find. My final search sometimes includes the name of the therapy being publicised followed by the words Quack or Quackery; the result are often fascinating and most revealing. Some reports give examples of a patient walking away pain free but when you delve further it is very likely the patient will need regular follow up treatments. I also wonder how much the placebo effect* is part of these miracles, and what about all the people who it doesn’t help? Some of the ones it didn't help can be found when you do the above mentioned Google search.
As a CRPS patient I can understand how easily we can become the perfect target for stories of miraculous new treatments, why else would you sleep with potato peelings in your sox overnight unless part of you believed it might ‘cure’ your pain? (And NO I did not do this!) Why else do many of us in the early stages of CRPS spend money trying numerous alternative therapies that usually do not help and often makes our pain worse? CRPS pain can make us desperate to try anything if it we believe it might help, even if it costs tens of thousands of un-reimbursable dollars –Whoa! Here’s where it has to stop!
One of the reasons I believe we are vulnerable is that is so hard to really understand what is going on in our bodies with CRPS. It defies logic that there is still not something wrong with your foot or hand or wherever the pain is; our brains tell us there has to be something wrong as this is where we feel the pain. It takes a lot of reading of the right information to really grasp that the pain is being maintained by a malfunctioning peripheral and central nervous system. I have read widely books and online articles about pain and CRPS, I have listened to my pain management specialists and the more I learn, the more I realise there is still so much the medical profession doesn’t know and even more that I don’t know, however I have grasped and accepted that the pain is not actually coming from something still wrong in my foot. This is an important aspect of dealing with CRPS and hard as it is for us to understand it is even harder for others who do not suffer from CRPS and this of course presents another problem for us –how do we explain CRPS to others?
I try to be selective with whom I attempt to explain CRPS, there will always be people who are not really interested or I decide are not worth the effort. The friends I have made in the CRPS community are such an important part of my life, many of them I have never actually met, yet we all value our connections and are there for each other during difficult times or to celebrate any achievements. We do not have to explain anything to each other, we speak the same language and just ‘get it’.
*‘Placebo Effects’ a critically acclaimed book by Frabrizio Benedetti