An insight in what it is like to live as a young person with a chronic pain condition that has no cure. Follow my journey with Complex Regional Pain Syndrome by reading the posts below.

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I suffer from a debilitating chronic pain condition called Complex Regional Pain Syndrome. Facebook: @LivingWithCRPS

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Complex Regional Pain Syndrome (CRPS)  is a chronic pain condition characterised by pain that is greater and lasts a lot longer than would ...

Tuesday 30 August 2016

Eleven


Since being diagnosed with suspected chronic pain and eventually a diagnosis of Complex Regional Pain Syndrome I have had eleven procedures, including two minor ones which I had just before the diagnosis of CRPS. Only one worked and that was only the beginning, if only I had known what was coming so I could prepare myself for it. 

Since February 2015 I have had nine day case procedures, five of which I have had in 2016. Thats nine trips to radiology theatre, nine sets of sedations and numerous injections plus infusions. Yet only one, the first one in February 2015 could be considered successful as it gave me relief from the pain for a week.  The following eight have made it worse and believe me there are different degrees of worse. 

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Procedure Number 11.

I went into hospital understandably apprehensive given previous experiences, but I went through the normal processes  signing in and being admitted to the ward, meeting my nurse making sure everything was in order. Finally my consultant came round and we discussed the procedure I was  having and what the risks were, I signed the consent form and that was that. I lay on my hospital bed watching television wishing time away as I was extremely hungry as I was not allowed to eat. Eventually the porter came to take me to radiology theatre, final checks were made and I don't remember much else. Apparently the procedure itself went well, but I came round in agony, I was hunched over a pillow crying saying my leg and back hurt (both affected by CRPS). Of course I was given lots of strong pain killers but they barely touched the pain, I spent the night in hospital and spent the whole of Tuesday in what felt  like more pain than the day before, I was being given as much pain relief as they could give me. I had an MRI scan of my spine, which was horrendous as I was forced to lie down which was agony. There was no changes from my previous scans and the decision was made to discharge me, with the pain killers which they were giving me on the ward.  I lie (well halfway between lying and sitting) in bed writing this post in the same amount of pain and on the same medications.

But why?
The question I get asked most is why? Why do you put yourself through eleven procedures? When the success rate is so low? Well when you suffer from chronic pain, from the most painful condition  recognised by medicine, you will put yourself through a lot in order to try and gain remission or, to lower your pain so you can have a better quality of life.  If  there is an an avenue open to me that might lower my pain levels that seems appropriate then I why not take it? If I don't take it I would never know if it would have worked or not, it may be a significant opportunity missed. With regards to success rates, there are no high success rates with procedures and treatments for CRPS. Just one of the very annoying characteristics of CRPS is that everyone reacts differently to treatments and procedures, therefore the medical professionals cannot give you a reassuring success rate, you have to weigh up the pros and cons and take the risk. 


I took that risk eleven times, and unfortunately for me only one worked.  I don't regret taking those risks, even if I am paying the consequences of a few of them. They were opportunities to start to take my life back from CRPS and I think most people would do the same if they were in this position. However I still have an opportunity to take my life back and that will be as a wheelchair user, I will be able to do almost all the things I did before CRPS and also a lot of new opportunities will arise.  However I digress, one of the reasons I had to go through eleven procedures and have CRPS change my life completely is because there is not enough knowledge amongst medical professionals, or research going into  CRPS and how to treat it. I hope no one else would ever have to go through the pain of having Complex Regional Pain Syndrome, let alone eleven procedures.  It is only by writing posts like this that we are likely to get awareness and ultimately more research, better treatments and possibly a cure.


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