Just a quicky post to ask any UK CRPS peeps to take a look at the link below (you’ll need Windows Media Player I think but try it anyway).
Yesterday an online acquaintance who some of you may know, Kev, managed to get his words heard in parliament thanks to his MP Ian Stewart. This was a really positive moment for UK CRPS patients as it has highlighted the need for more funding into research and diagnosis. I really would recommend you watching it for yourselves as I don’t feel I will do it justice, however I will come back to this post and bulletpoint a few pertinent points made once I’ve re-watched it with a notepad. The CRPS subject comes up at about 2hrs 19 minutes into the video. Please share!
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,
So last time I updated you, I was talking about the big A, acceptance. That’s still something I am monitoring, as you know I have mixed feelings on it. I do think acceptance is bandied around a bit as an excuse not to bother trying by doctors who don’t or don’t want to understand CRPS and chronic pain in general. Scary when it’s your pain clinic consultant! That said, I’ve had to broach my CRPS in various circumstances recently and on reflection I do think acceptance is something I can hack, well a bit.
One example is my eye test this week – I lost my glasses a while ago and at my last test had been told I “MUST WEAR THEM AT ALL TIMES!!!”, so avoiding the situation wasn’t an option. Part of the eye test involves the optician asking about current medications and health concerns, and I couldn’t really get around this without having to mention the opiates and CRPS. On sharing this, with a cringe, I got the overt sympathy response from the optician. “Oh you poor thing, I could never cope with that, it must have ruined your life”. I don’t know whether it’s my aversion to any kind of pity or being a Brit, but my usual go to response of a bit of self-deprecating humour came out. I don’t want to be a “big deal”, I don’t want CRPS to be getting all the attention when I have gorgeous big brown eyes that need checking out. I played it down, “It’s no biggy, everyone’s got problems and at least mine get me the good stuff!” Is this another step in acceptance? Possibly. I do think I am becoming obsessed with that word now and not in a good way. *spits*
Now ACKNOWLEDGEMENT is an issue I can sink my teeth into. That’s empowering, but can be the polar opposite of my stiff upper lip when I focus on why others aren’t acknowledging my pain, symptoms, story, right to be listened to. I think this was a greater issue that came out of that recent pain clinic appointment. I wasn’t acknowledged. Noone wants a fuss made over them (although it’s my birthday today, so you can go for it this once lol), but how do we balance avoiding the pity trip (whether from ourselves or others) with enough acknowledgement of our issues and what is important to us? Too few doctors acknowledge CRPS as an illness, I’ve already met a couple in person who see it as “just a label”, and I’ve met more who think life is better without a diagnosis or label at all. Perhaps that’s the case, but how does our pain get acknowledged for services such as benefits without that? We get seen as moaners, people who “just have a bit of a bad back”, that kind of thing. We need that acknowledgement to open doors that help us through in life. It’s a fine line, I know, but it can make all the difference. It’s all very well saying we don’t need a diagnosis psychologically, but people are different, what they need is individual, and socially/support-wise many of us do really need a label just to get the help we need.
The last A is advocacy – who has our back? Not the government at the moment, who are stripping the weakest in society of their benefits. Some of us have great doctors who are tuned into what they need, and others of us feel left out to dry. I’ve been struggling with my pain clinic this month. As some of you will have read, my consultant got me out of the door by promising me a place on a pain management programme “within a month”. This consultant runs the PMP, and is well aware of any waiting lists. I was stunned and my husband was cynical of the promise but got direct answers that left no uncertainty – I would have a letter within a fortnight, and a place to start within a month. Nothing there to be misunderstood. When I didn’t receive a letter, I rang the secretary – and I might be paranoid in pointing out at this point that she has told me previously that she has called ID on her phone. Four calls over a week were answered by another doctor’s secretary who shares the office but not the phone line. Each time I was promised a call back within the day, not one time did I get one. I caved and rang back, to be scoffed at by my doctor’s secretary and told it will be “months and months” before I even heard about the PMP, never mind get a place. When I explained what had happened in the appointment I was told I must be mistaken, but she would speak with my consultant and ring me straight back. Did I get a call back? Did I heck as like. Another call for help regarding severe new symptoms and possible rapid spread of the CRPS has also been ignored despite the other secretary passing the message on that in her view I needed urgent help. Still waiting, a week on. On a side note, my consultant’s secretary is not the only one with caller ID and I have not missed any calls, never mind one from her office. So advocacy is not something I have there.
I have however used the Patient Advice and Liaison Service (PALS) in the past and intend to do so again on Monday. I also finally have the acknowledgement of my GP now my diagnosis is in writing and he is finally working with me in getting things sorted. This has involved the GP going over the pain clinic’s head by referring me directly to the Spinal Chord Stimulator neurosurgeon that the pain clinic refused to do. It may well also involve a referral to a new pain clinic as I believe the relationship with my current one has irrevocably broken down due to their continuing lack of communication, acknowledgement and support.
Another part of the advocacy issue is that I have received a response from the Secretary of State for Care and Support to my letter to my MP. I will get it scanned and uploaded at some point when I work out how best to do that. Check out previous posts on how you can get the government to listen to us. The Rise Above Pain blog will be moving to a new level in advocacy for CRPS and chronic pain sufferers, I intend to get the ball rolling with a support network and advice packages, and also get some education on CRPS out there to those who can genuinely make a difference.
So that’s where we’re at. I’m going to keep pushing for support while not giving in to self pity, which is something I really cannot stand in myself. CRPS can take my nerves but it can not take my often ridiculous sense of humour or determination not to “give up”. If there are people like me in the UK who want to get this moving forward, please pipe up!
Well, it has come to that point where my musings about living with pain have become a more pressing need to share information on CRPS and chronic pain, not just because I keep coming up against brick walls, but because I am watching others go through the same.
Doctors who are not current in their knowledge of CRPS (“It’s just a label”, “It can’t be treated”, even “What is CRPS?”) and/or their treatment of chronic pain. Patients having to go from doctor to doctor until they (if they are lucky) find one that “fits”. People like myself looking for a UK CRPS support/information group who will support them and get their voices heard.
There are some fantastic CRPS/RSD groups in the US, Australia, Canada and the likes, and yet over here I have only found groups that have closed down. The groups abroad are willing and happy to support us but we have very little in the way of support and advocacy/education here in the UK.
So, after making sure I wasn’t going to be treading on toes and after a positive response to my contact with my MP regarding the UK situation for chronic pain sufferers, I have decided to take Rise Above Pain to the next level and evolve it into a UK group pushing for education on CRPS (and other conditions should I get the feedback/support from others) and fighting for our rights right here in Britain.
I am hoping to find UK sufferers/carers to help me get this off the ground – until then I will keep blogging away and set up a small forum for us to share our thoughts. Perhaps a Facebook page? Let me know what you think. From now on Rise Above Pain will get you heard.
Suzanne is one of our US followers and has RSD/CRPS. She also has a real talent for jewellery making and this is a post about her awareness jewellery, with a link to her web shop. I would highly recommend that our readers have a visit as her jewellery is just gorgeous. I keep looking and wishing I could buy the lot!
Edited to add: Suzanne has let me know she ships her gorgeous jewellery internationally, and makes awareness jewellery for all sorts of causes, not just CRPS. xx
Well – who got Easter eggs? No chocolate eggs for me this year, boo hiss. Hope you all had a great Easter.
Following my much anticipated trip to the neurosurgeon on Saturday (30th March), I have the relief of having been diagnosed with a pain disorder called Complex Regional Pain Syndrome, or CRPS for short. Relief? Yes relief – I have waited so long for an answer to why I have chronic pain. It’s not all in my head, I told you so! I’m sure the negativity will hit me soon, but then it’s not like I didn’t have the pain before Saturday! As CRPS, although not rare, is relatively unheard of, even by many doctors throughout the NHS, I wanted to share with you what I have found out about it so far. Bear with me on this one as I am new to it too! If anyone would like me to add to this or amend it, please let me know. I’ll include a list of links at the end if you’d like to read more. As a side note, I would also love to hear from other people with CRPS.
CRPS was previously known as Reflex Sympathetic Dystrophy (RSD) and historically labelled as causalgia (from the Greek words for heat and pain), Sudeck’s Dystrophy and Hand-Shoulder Syndrome. Not a lot is known about this condition, other than that it often arises after an injury or surgery (most commonly in a limb, but can start anywhere in the body) and causes a variety of symptoms, the main being chronic intractable neuropathic pain (such as burning sensations), often making the gentlest touch incredibly painful. Other common symptoms include skin, nail and hair changes in the area affected, differences in temperature/colour of the area, and swelling. Sufferers don’t necessarily have all of these symptoms, and commonly CRPS is progressive. The psychological result of the chronic day in day out pain and lack of sleep is often depression, understandably. There are many more symptoms that are associated with CRPS, but I won’t drag it out into a huge list (see links below for more info).
The important thing to mention is that early diagnosis and treatment is absolutely imperative – treatment within the first 3-6 months gives the best chance of recovery, with full recoveries after a longer term being very rare. CRPS is generally considered a lifelong illness in cases where patients have had long term chronic pain of 2 years+, although in these cases patients can go into remission either spontaneously or through various treatments. CRPS is most commonly treated with a multi-centred approach, often using drugs or epidural nerve blocks to target neuropathic pain, physiotherapy to aid movement in the effected area and psychotherapy to address psychological and social needs. This psychotherapy is believed to be very important in longer term cases where acceptance of chronic pain as part of life and pacing skills are considered crucial.
I found this video on a pain forum, which goes into the pathways of neuropathic chronic pain in decent layman’s terms – it’s really well worth watching, and not boring at all. While it doesn’t mention CRPS by name, that is what Chandler suffers from and the information is pertinent regardless.
I will post more in future about CRPS itself and how it effects people in the future, but in the meantime I think it’s really important to publicise this condition. Most of the charities and support for CRPS/RSD sufferers is US based and more frighteningly, there is very little knowledge of CRPS within the NHS itself. It is really important that the message gets out about it.
According to figures published in a May 2012 paper by the Royal College of Physicians, there are potentially 480,000 sufferer of CRPS in the UK alone, and in stark contrast only 20,000 have actually been diagnosed. Early diagnosis is crucial, as I mentioned before, so it’s important to get the word out.
I spoke to a gentleman on a pain forum recently who has been in touch with his local MP to ask for discussion on CRPS within parliament. His MP, Ian Stewart, is going to ask for a debate in parliament “after Easter”, and he is asking CRPS sufferers to contact their MP and ask them to get in touch with Mr. Stewart and support him – the more MPs that are aware beforehand, the more likely it is that parliament will sit up and listen. I’m going to beg you now to please write to your local MP (make sure they cover your constituency or they will not be able to help) and tell them about CRPS, send them some links from the list below, and tell them about the RCP numbers above. Ask them to support Ian Stewart in his call for a debate. I and many other people would very much appreciate the support!
In the meantime, if anyone finds a current UK based, CRPS-specific charity or support group, please let me know. I’ve been looking all week and can’t find any that are still active. I am very interested in gathering a bit of momentum for CRPS support and education in the UK.
More information on CRPS can be found at the links below: