My experience of the Understanding Pain Science course and issues surrounding diagnosis
A little while ago I was referred to the Pain Management Program locally, and my new physio suggested as part of this that I attend a “course” called “Understanding Pain Science” at a local NHS medical centre. What was called a course by the physio was actually a one off lecture/presentation and I attended it yesterday. I thought I’d post of my experience of it in case other locals were thinking about going, or other UK folks had been offered similar through their local services.
On arriving at the medical centre, I was told the course was on the first floor, which wasn’t an issue as there was a lift. I hobbled up there (still waiting for my NHS wheelchair!) and waited in a roasting waiting room for about ten minutes or so. Quite a few people turned up for the course, and a lot of my expectations about who would attend were blown out of the window – the majority of the people who came were not how I expected (in other words not like me, although some were!). I was surprised by how many young people were there.
In the waiting room I sat next to a lovely lady who had brought her dad along. We got chatting, made use of the water machine (it was so hot) and at that point I felt that if nothing else came of the trip out, I had at least been out and socialised a bit!
We were soon called through the doors by the physiotherapist who was giving the talk. At this point it became obvious that the room we were going to hear it in was at the other end of the building. It was a long and winding walk around the narrow corridors and a couple of us held the line up. OK, I held the line up. The younger and fitter got in there first and as I expected, took the back seats – ahhh it was just like being back at school! So, I and the people I was talking to in the waiting room ended up sitting at the front. First thoughts were that although I’d been told this was going to be dead informal with loads of different seating arrangements so that we could move around if necessary, this was not the case. No problem I thought, there will be breaks.
The talk started with us being given handouts of the presentation, and also a couple of questionaires to fill out – a satisfaction/feedback one, and a pre- and post- talk questionaire on our knowledge of pain.
On the actual presentation time and arrangements, I was disappointed that there were only rigid chairs available and that although we were told we could get up and move around, to do so would’ve disrupted the talk. There was an enticing looking high backed cushioned chair, but it was sat behind the projector and not in use, and so it taunted me throughout the talk and I felt I might not have concentrated as much as I could have as I was sore and stiff and uncomfortable. There was one break of about two minutes with water available. The only other furniture in the room were office tables and a large treadmill, which generated a few sniggers – was that for us? I would’ve liked to have seen a variety in seating options and a layout that allowed for people to move around without interrupting the talk. None of us dared to move around and from speaking to others who went, most of us were feeling the same, like we couldn’t or daren’t get up and move if we needed to.
The talk itself was good – it was not so dumbed down that it was telling us everything we already knew, although I would’ve preferred a deeper focus on some areas. Neurotransmission and central sensitisation were the main topics and a lot of this I already knew. That said, there were some aspects I didn’t have as much knowledge of already, for example the role of the homunculus (part of the brain) and stellate ganglions. Some of the talk on these areas were particularly interesting. I had no idea that pain actually changes the shape of the brain for example. It would be silly for me to go into everything I was taught in more detail as some of you will have more knowledge in other areas, and everyone’s different. However, I felt that for the time allotted (one and a half hours), there was a decent amount of information given, even if it was at the cost of information I’d have liked to have learned more about.
I did have a couple of concerns. One large focus of the talk was on how to modulate information sent to the brain – so basically what increases the output of information from nerve cells and therefore increases levels of pain (stress, etc). That was really handy, but the suggestion was that if certain patterns of thought increase pain, that by thinking pretty things pain could dramatically reduce or go away. This may or may not be true, I have no idea, but the emphasis was enough to suggest that we were responsible for our own pain. I think that at this point a little humility in accepting how tough this actually would be for a chronic pain patient would’ve allayed my concerns – just a simple comment. On a bullet list of things that increase the pain signals to the brain, there was very little focus on physical aspects such as chemicals, disease, etc, and a huge amount of emphasis on social aspects. At the top of the list were wider social aspects such as the benefits system and us looking for a diagnosis – this was not presented as being a result of pain, but as a cause/influence on pain levels. Maybe I was reading too much into it, but I did feel there was a hint of propaganda there, that we’re making things hard for ourselves and that in stopping looking for a diagnosis and getting our lives back together, our pain could go away. I think my thoughts on that are a little over-sensitive and as such I took it with a pinch of salt and enjoyed the rest of the talk.
This idea that looking for diagnosis increases pain bothered me most I think. As a lot of you know, I had four years of chronic pain before anyone offered a reason for it, Complex Regional Pain Syndrome. Since then the reaction by my pain team and other doctors to this diagnosis has been one of two reactions – “What’s that?” (out of hours GP and other GPs/medical staff) and, from the pain team and neurosurgeons, laughter and disbelief – I simply to them don’t have it. When I ask what I do have, they go quiet then say I don’t need a diagnosis.
While I understand that treating symptomatically is the key in their opinion, I really do have a problem with this undertone of us pain patients being bothersome in wanting to know the cause of their pain. When we get told not to look it makes me personally feel like I want to know even more, especially when in my case there are many potential causes and many of them haven’t even been explored. And while this course presented the worry over a diagnosis as being bad for our pain, why is it that it is seen as being our fault? Surely if doctors could agree more on allaying these fears, covering the bases testing wise and working together to ensure we haven’t got some of the “nasties”, this would in turn reduce our worry? For example, in this diagnosis of CRPS I got a bit of comfort and relief, but at the same time knew that it should be a diagnosis of exclusion and that exclusion of other causes has simply never happened. I wonder how many others have been told their official diagnosis is “lower back pain”, which in my view is a symptom and not an answer? The medical profession have refused to come together and unify in a response, so when we get this back and forth – “You’ve got X”, “No you haven’t, what a silly idea”, of course the worry increases. That’s not our fault!
Anyway, I’m harping on now. The course was good, it didn’t focus on some things I would’ve liked to learn more about, such as the role of chemicals and glial cells in chronic pain which were not even mentioned in passing. I suspect the real problem with the depth of the talk was time. I would’ve liked to have seen the course BE a course, with more than one talk perhaps. As it stood it was an hour and a half and with a two minute break in the middle that made it difficult to endure. This meant that a lot of information had to be crammed into a tiny amount of time and as such things weren’t going to be as in depth as some of us would prefer. However, I still think it was worthwhile attending if for nothing other than the social experience and being able to provide feedback that might make it better for others in the future.
Hope you’re all having a “good” week,