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Yes, I am alive (updates, PMP, SCS, social services in the UK)

Sorry to make this the 3rd post today but I wanted all the stuff I have to share in its relevant “box”, so had to split it up.  

I am alive, sorry for having been quiet again but as you probably guessed there’s been a bit of a flareup.  I’ve also had a million and one appointments and assessments.  I’ve even been sent a form to fill out to get a form to fill out!  

I think I told you recently I’d been referred to the pain management program.  Well I met initially with a physiotherapist and was told I would be working with the team on a one on one basis for now as I’m apparently not ready for the group PMP.  To me that’s a positive although my competitive side is wondering why lol.

Up to date, I have now seen the physiotherapist twice.  Within these appointments we’ve discussed what I need out of this relationship and moved on now to pacing and my sleep issues, both of which are big issues to many of us with chronic pain.

The physio has talked me through the pacing concept in depth and this ties in with my GP’s decision to refer me for a wheelchair assessment (which I’ll go into further into the post).

For me personally, pacing is going to be difficult.  The idea in the simplest terms is that when you push your boundaries in activities, it has a negative impact on what you can do the next day (or even longer).  It is well accepted that regular activity helps pain, and yet when we continue on trying to be “normal”, we end up in a flareup, stuck in bed.  So how do we change this?  For me, I’ve been told I need to work out for any activity at which point pain interrupts my thoughts and take a step back from that to determine the safe level, whether that’s in distance of walking, time, etc.  Then I can do a rest activity for a small amount of time, and start again.  This in theory increases what I am able to carry out without laying me up and putting me back a step.

So for example, in my case pain interrupts my thoughts very quickly when I’m walking.  Embarrassingly it’s about 2 minutes into a stroll!  The physiotherapist explained to me that all activities in very basic terms fall into four boxes – walking, standing, sitting and lying.  My rest activity can be any one of the other three.  The plan for me is to use a wheelchair as a walker, walk for a lesser amount of time than it would take for pain to become an issue, then use the chair temporarily and start again.  This should in theory make it a lot easier for me to have a day out rather than worrying about finding a public seat, and because I’m not hitting my breaking point, I should be able to gradually increase my mobility without paying for it in days in bed.  There was an emphasis put on doing this regardless of whether I was having a good or bad day.  On good days I am going to be very frustrated and on bad days I will have to kick my arse into gear and get on with it.  I’m ready to do it…..well mentally I am.  The wheelchair is absolutely imperative for me, and this is where the problem lies.

My GP referred me for a wheelchair assessment through adult services (part of Social Services).  I was told they would come out to my house the following Monday but in reality they turned up on the Friday before and I wasn’t in.  Not a problem, they had my mobile number and rang me to sort it out.  At this point I was quite surprised as I had been told this would be an in depth evaluation in and around my home of my mobility needs.  Instead the lady asked me a couple of basic questions on the phone, then told me I’d hear from them when I would be getting a wheelchair.  At this point she told me that the waiting list was well over 20 weeks.  Well, when you’re getting something for nothing you shouldn’t complain but I was really disappointed to be honest as I was dying to get going with my life instead of being stuck within a five minute walking radius of my house.

I am told by my physiotherapist that I can hire a wheelchair through the Red Cross, which is absolutely great.  I’m lucky in that there is a centre just up the road from me, so my sister and I went along to ask for more information.  They will lend me a wheelchair should they have one in stock, but it can only be for 6 weeks.  So it looks like I will have to buy one well before I get a chance to have an NHS one, which is worrying me due to the cost of them.  

The Red Cross also explained to me that most of their wheelchairs aren’t returned by their clients, which in hindsight is understandable but not acceptable.  I suppose people are desperately in need in this area due to the long waiting list through the NHS/Social Services.  However, it is very sad in this day and age that people are essentially stealing from a charity.  Perhaps there’s something to be done there, a bit of publicity for the Red Cross and over the ridiculous waiting time for NHS help.

Moving on to the big appointment that I was dreading – my meeting with the spinal cord stimulator (SCS) surgeon.  The usual process for a consultation with him is for the pain clinic to refer you after all else has failed.  My neurosurgeon had written to my pain clinic recommending they refer me to him, but my pain consultant had refused, saying they never work and wouldn’t be suitable for me.  My GP had then suggested he refer me directly as he (and I) felt that the pain consultant had been hasty in saying no and was biased.  So I went along to this appointment knowing that I would be seen as the difficult patient who had gone over a consultant’s head, and this made me very nervous.  At this point I fully expected it to be a “No”, but I wanted to hear objective information and also be heard.  My pain consultant’s decision had been based on the idea of it not ENTIRELY fixing ALL my problems, and that’s not an expectation I ever had.  I just wanted to explore it and talk about it.  

So, last week I went along.  I went in ready to be told that it wasn’t suitable for back pain, it wouldn’t take away everything and that I wasn’t suitable for a trial.  I explained that I didn’t have those expectations and was a bit gobsmacked by the response.

The surgeon asked me what my main problem was.  I explained I have three types and areas of pain – the back pain, the nerve issues in my thighs and groin, and my sciatica.  I explained that out of all of them the sciatica has the greatest impact on my mobility, which is more important to me than my pain.  At this point he stepped in to explain he has “new technology available” that may be able to target my back pain as well as the sciatica.  In contrast to what my pain consultant saying about the SCS only being able to target a small and localised amount of pain in one limb, the SCS surgeon also explained that in many cases they actually struggle to get the stimulation into just one limb, so he feels that he could even target my burning thighs a bit.  So I went in with no expectations and came out with a bit of hope.  

I’m not saying SCS is definitely for me, but at this point I feel a trial would be extremely worthwhile.  The surgeon says I am an ideal candidate, but that I have to lose weight and be “in the right place” physically and mentally for the trial. 

Ordinarily the process would be to finish the group pain management program before getting a trial, but I explained that the physio had decided to keep me on one-on-one for the foreseeable future, and that this would mean I wouldn’t be starting the group PMP until potentially next May.  So, for me, they are going to liaise with my PMP physio and let her judgement help decide when I’m ready, rather than me having to wait for the group PMP.  I am really pleased and grateful that they were flexible in this.

As a final note, I wonder how many of you have had to apply for a disabled bus pass?  In the past in this area, you would take along your DLA entitlement to their customer services office and that would be your proof.  Now it is different – I visited their customer services and was told I would have to ring Social Services for (yet another) assessment.  I did so and was asked some questions on the phone and told they will be posting me out an application form.  I asked if that was it and they said that form goes back to them and then the transport company send me a form.  So I have to fill out an application for an application form?!  Madness! 

Chin up lovelies, speak soon xx

My experience of the Understanding Pain Science course and issues surrounding diagnosis

Hi folks!

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,

Kathy
xx