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Friday 19 August 2016

Pain Management Revelation

A couple of weeks ago I had an appointment with a pain management consultant, something I should probably have had at least 2 years ago. Over that time I have experienced pain in my back around the area of my remaining kidney and underneath my ribs. This has gone largely unexplained and has been evident since my nephrectomy over 3 years ago.
Following a visit to the Orthopaedic Hospital I was sent for physiotherapy which was a revelation as it was discovered I was lopsided. This was probably a result of me leaning away from the pain of my surgery when I was first out of hospital. The physio was very good and I was soon standing straight and so they recommended yoga. I began a local class which I still attend weekly and has helped tremendously. However, the pain didn't go away and hurt to such a degree that I was also taking daily painkillers.
The drug I was prescribed was Gabapentin, an anticonvulsant medication that works on the nerves and chemicals in the body which are responsible for certain types of pain and seizures. It has been proven to be very effective on neuropathic pain which is why it was given to me and it worked extremely well. The trouble was that in order for it to work I was taking a pretty high dose daily and this had side effects of which I didn't always recognise. As well as blocking out the pain it was almost mind numbing, having worked in a creative job I just couldn't focus on getting back to work after my nephrectomy. For the most part I reasoned that this was to do with the life changing event I'd been through but as time went on and my dependency on Gabapentin grew I realised it had more to do with the drugs I was taking.
When I was recently referred back to hospital care and went through having more scans and xrays it was a real shock to the system. My pain hadn't been improving and I had begun to have doubts about what may be causing it, I'd never been given a conclusive reason and the answer I had been given was 'probable nerve damage'.
Not having ever liked to take drugs of any kind it had been playing on my mind more and more that the Gabapentin was doing me more harm than good. If nothing else it couldn't be doing my kidney much good and so I made a rash decision to stop taking it. Rather than discuss this with my GP or wait for the pain management appointment I decided to just stop, no weaning myself off just take no more.
Bad move. I was so poorly, for nearly a week I felt dreadful. I was incredibly lethargic and felt extremely low, that awful end of the world feeling you get after a bad hangover only double. If this was cold turkey I don't ever want to take drugs again.
By the time the pain appointment came around I'd been off Gabapentin just over 2 weeks, I was taking a combination of cocodemol and paracetomol instead so not entirely drug free.
While waiting to go in I was given some Q&As to fill in about my pain which involved answering questions on a scale of 1-10. How bad the pain became in differing circumstances, what kind of activities caused it, how this made me feel etc. It was strange having to give honest answers when I generally try to brush over the pain and especially how it makes me feel, it was quite an emotional exercise.
I was pleasantly surprised when I was eventually called in to the doctor, he was remarkably nice and engaging, speaking to me not at me as I've often experienced with consultants. He firstly wanted to know a little more about the history of my pain and then began to look at the various scan images I'd had on his pc. I was asked more questions relating to the nature of the pain, what made it better/worse, how frequent etc and then he asked to examine me. Thankfully this only involved me standing in front of him while he felt different areas of my my back. As I hadn't thought I'd need an examination I hadn't dressed appropriately (nothing new there) and had to unzip a high waisted skirt for him to get to the correct areas.
When he did find the right place I thought I'd fly through the ceiling! He pressed his thumb in so hard and kept it like that for what seemed ages but was probably only 30 seconds. After my squirming and trying to wriggle away from him (which he seemed to find mildly amusing) he asked me to sit back down and said 'I have some good news for you'. Firstly the scans show no evidence of the cancer returning (I knew this) and secondly I can't find any nerve damage either. Now this was a revelation.
For nearly 3 years this has been the line I've been told, 'probably nerve damage' usually followed up with, 'not a lot can be done'. So to hear that this 'probably' wasn't the case was the best news I'd had in ages - next to the NED.
The doctor then went on to say that his diagnosis would be that I had a large knot of muscles in my back that was causing the pain. When I think back to the way I'd struggled with the surgery pain which had in turn caused my whole gait to become uneven this wasn't surprising. He then went on to describe to me the various ways I could deal with the pain including acupuncture, massage, trigger point massage, yoga and TENS machine.
I left his room feeling like I could walk on air I was So Happy! Prior to this appointment I had been taking a high dose of painkillers and living with the fact my pain would probably never leave. Here I was walking away with some proactive measures that I could do myself to help ease and in turn maybe cure the pain, I couldn't stop smiling. Furthermore, he told me that exercise including running wouldn't have to be avoided as long as I made sure to  take appropriate action afterwards whether by massage or tens etc. which would help release the muscle tension.
I'll write more on the steps I've taken since this appointment in my next blog (I'm way behind...) - I'm still smiling :-)

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