The Understand Pain Talks and Workshops are our way of getting out into communities and listening to people: the voices of society. A suffering society. At UP, our purpose is to contribute to society by showing people practical ways of reducing their suffering by living their best lives.
Understand pain and move on to live a fulfilling life
On Wednesday 22nd May, Richmond will be talking and running an UP workshop in New Malden.
This event is free, although we always welcome donations to fund our going work.
Touch wood things are going pretty well. Training is totalling 70-80 km per week with 1-2 longer runs, interspersed with shorter dashes and trundles. As a trainer friend said to me once, ‘Just get to the start line without an injury and you’ll be ok’. There is some truth in this of course, but with the Brighton Marathon coming up soon, followed by the two ultras in May and July, the mileage is key.
If you’re interested in running, the following section outlines my plan. Feel free to skip on!
#upandrun ~ hashtag on Twitter to follow and tweet
Last week I set myself a plan to run 1 x 30 km and 4 x 10 km, totalling 70 km. It felt good and was easily slotted into the working week. This week I am practicing two longer runs back to back and will continue with this trend. Today was just over 22 km and tomorrow I will do a minimum of 30 km on slightly tired legs. Either side will be a few 10 km runs when I try to push the pace.
There are 5 weeks until the Brighton Marathon (Sun 14th April). The last week or so will be tapering and fuelling. Prior experience of ‘the week before’ tells me that I need a good plan. This includes plenty of mindful practice, imagery, easy movements, eating well and rest. I have found it to be a twitchy time with a unique restlessness of mind-body. This will be a good test.
Soon afterwards comes the Isle of Wight Challenge. There will be a few weeks of continued training with back to back longer runs and again the tapering a week or two before the 2-day event at the start of May. A longer gap before Race To The Stones (July) means resuming the mileage in warmer weather.
One of the pluses of these ultras is the scenery. I have been to the Isle of Wight and enjoyed the spectacular views from certain well known spots. The Challenge allows for the experience of the complete tour! That excites me. As does the route from The Chilterns, across the top of the North Wessex Downs, along the ancient path–5000 years!
The Brighton Marathon #upandrun is a joint project, UP and CRPS UK. The money we raise through sponsorship, the quiz night (details soon), auction and raffle will support our on-going work to make a contribution to people’s lives and to encourage society to revise the understanding of pain.
Further, look out for the run of UP workshops. The aim is to offer these across the UK if we can raise sufficient funds. You can support us << here >> . If you suffer chronic pain or know someone who does, you’ll understand the importance of this project.
For some time I have been eyeing up the idea of ultra running. Having spent the past few years training for and completing several marathons and half-marathons, the urge to take it onto another level overcame me. I booked myself a date with Race to the Stones.
An old friend completed the 100k run this year. I went down to collect him and watched the runners coming in. There was such a great vibe! Much like a mini-festival; relaxed, encouraging, inspirational and lots of smiles…in amongst some pain of course!
The course follows an ancient path. We will be running and walking in the footsteps of Vikings, Romans, dragons and Kings — not in fancy dress I hasten to add!
Journey from the Chilterns to the mystical North Wessex Downs past mighty iron age forts, ancient monuments and through some of Britain’s most stunning landscapes
The sun is not up yet, but we are. As ever, you seem to be waiting for the day, and then it is upon you.
We arrived in Eastbourne last night, welcomed by the most enormous moon as we followed the coastal road, Beachy Head on the right in the dark. In places I had to drop down to third gear to climb the hill, thinking about how we would be running those very same hills in just over 12 hours.
I am fortunate that a old pal has done the Beachy Head Marathon before. He also introduced me to a fellow runner from his club who has done it ‘5 or 6 times’. Casual. I would definitely remember how many times I had done it! So it can’t be a big deal; right? I was invited to a 20k warm up, which I politely declined. 44 is enough today thanks. The next piece of advice was gold: at the start, walk until you hear the bagpipes and then start running. This was followed with, yes, the first hill is a bastard. Righty ho!
Time to climb into the kit and grab some brekkie. There’s always something special about putting on the shirt, and representing something far bigger than oneself. You remember that the run is representative of a huge need in society and is one more step forward in raising awareness.
Look out for the pics on the way round, and maybe some live footage.
Following the Box Hill 20k trail run, I fancied something along the same lines. There’s definitely something about running out in nature, up and down hills, covering different terrains, and most of all the camaraderie.
So, on discovering that the Beachy Head Marathon takes place on my birthday in October, I felt compelled to sign up to give it a go. And then my wife Jo said she would do the 10K!
On the Beachy Head Marathon, my good friend and experienced marathoner said to me, its a completer, not a competer. I like that idea. Runners of distance get it. There’s a draw to discovering what you can achieve, how far you can go, what its like to be out there for hours and to find out where your strengths and weaknesses lie.
I have only been at this for a few years so would count myself as a novice in the endurance world. However, in this time I have learned a great deal about the rewards of perseverance and how they seamlessly spread into other arenas of life. No matter which step you are taking, there’s always another. But which direction do you choose?
At school we were made to run almost every day. At the time I resisted. Why Sir, I would ask (often). What’s the point of running? I used to think running was just about, well, running. I now have another perspective. My son asks me, why do you run, its boring, why don’t you cycle, its quicker. I understand his view. He is 13.
Running distances seems to suit the middle ages; see all the ultra runners birth dates. As someone said to me, why would you want to go running for hours when you are in your 20’s when you could be out with your friends doing __________ (fill in the gap).
Anyhow, October 27th it is, Beachy Head the place. A stunning backdrop, challenging hills (up and down — I’m not sure which I prefer; up I think!), and a purpose. The purpose as you know is to share a message in society: pain can and does change starting with understanding. Regular readers will be aware of the reasons why chronic pain is the number one global health burden. I am sure that most if not all of us can think of someone who suffers daily. Think about what that is like: the way pain seeps into every corner of someone’s life. It may be you.
There is a desperate need for change in thinking in society, which will underpin the demand for the right kind of approaches to pain. We are still blanketed by methods that do not offer a way forward. This only emerges from understanding and right action. UP is all about both understanding pain and using this knowledge for right and wise action to ease suffering by living.
I am very excited. I am excited about the BHM 2018 but also because UP is now registered and ready to go. The immediate plans include the website as an immediate place of contact for quality information about pain, booklets to order and distribute, a little book of pain and online courses. We have raised a good amount of money to fund these projects but of course we need to keep this going with future funding, donations and other opportunities that present themselves. Great times ahead as we pursue this purpose!
This morning I woke up feeling like I was going to do an exam. Wondering if I had done enough practice in the last few weeks to enable me to perform on the day. I felt sick to my stomach, had hardly slept and just wanted to get to the start line so I could get it over and done with as soon as possible!
We left at 6am; I was layered up to the max not only with my running gear on but 2 jumpers and my thick jogging bottoms over the top, to keep my body warm and loose. Dad had made me swallow down some porridge with half a bottle of maple syrup in it to make it more bearable, before we left. That really did make me feel sick!
We jumped in the car and began the hour and a half journey. My nerves were getting worse so I started listening to my iPod music to try and settle myself down. Music has always been my go to thing to calm my nerves, even during flare-ups; singing to the music settles my breathing and brings me back to normality.I was so tired and kept feeling my eyes drooping but I know sleeping before the run would be a bad idea as it would probably just make me more tired.
We arrived in London and I wish I could say my nerves had gone but they hadn’t. Not one bit. I took my 15 thousand layers off in the car and then we walked towards Hyde Park. We had no idea where we needed to be so the four of us probably looked like headless chickens! We got into the park and it was so much bigger than I thought! People were flooding in and I was feeling more and more intimidated by the minute. What had I got myself in for!!
Richmond and his wife arrived, so we got to see our t-shirts for the first time. It was so strange to see my name on a sponsored shirt! It was suddenly really real and I just needed to get to the start line. We said goodbye to mum, Tom and Cooper and headed off. We got ourselves into our start section, and then did the 30-minute wait till it was our turn to head over the line! Dad and I took some last minute selfies, looked at each other then started our gentle run over the big white start line! All I had to do was get back to this line, to finish!!
The route was even more beautiful than I imagined and having that many people shouting my name as I ran past made my legs just keep going without me even really thinking about it. About 20 minutes in a man was running next to Dad and noticed his shirt. He said “CRPS?” and Dad explained that we were raising money and that I had the condition myself and was still running it. He said he had a friend who was suffering with it in his back and he needed help, so Dad told him to speak to Richmond and then the man congratulated me for what I was doing! I did not think anyone there would actually know what we were running for as most people look at me blankly when I tell them about my CRPS so it was such a positive boost that not only did someone actually know and understand the condition but that they also realised that this was not an easy challenge I had set myself! The issue with a invisible disorder is that no one can ever tell, day to day, unless it is obvious on that day so to everyone on that run I was normal but that day I didn’t want to be normal. I wanted everyone to see my condition and how hard I had worked and was trying to get round this run!
The first 6 miles seemed to fly by and it felt like as soon as we had come out of Hyde Park we seemed to be going back into it. The pathway through the beginning of Hyde Park was full of people; I couldn’t help but smile at the support and music blaring either side of us. There was so many people, I could not recognise the individual faces however suddenly I could just understand recognisable voices shouting both mine and dad’s names to which Dad then pointed to the left hand side and there was Mum, Ben (my brother), Tom and Cooper. I didn’t want to look directly at them as I knew I looked like a tomato and was panting like a dog! But just hearing them made me smile ear to ear and I could feel my legs pushing through more and more.
We got to the 8 mile mark and we were still running although it was starting to get hard now. Both Dad and I were starting to breathe differently although I could tell that neither of us wanted to be the one to ask to stop first as that person would then feel like they were letting the other person down! There were some slight hills but nothing as bad as what we have done at home so the hills weren’t too bad it was just the general ache in the whole body that was starting to slow us down. Dad suddenly stopped so I did too, and if I am honest I was relieved, I was in agony but I knew I would not stop if Dad kept running. The walk break allowed both of us to catch our breath but it also made the pain within my legs become more intense. This meant that when we started running again my legs hurt twice as much as before. But I just kept setting little goals for myself so I just had to get to that tree and then when I got there, I would set a new one.
This method worked for a while however then the CRPS started in my left hip and I was really struggling. In my head I was just thinking “I can’t do this, its too much” but no matter how much I thought this, my legs just did not stop running. We got to the 10 mile mark and Dad said we would just keep doing a mixture of both running and walking up to the 12 mile point. Dad was suffering with terrible cramp by this point and my hip felt like it was going to pop out of the socket any second. More and more people around us were walking too but everyone was so determined to keep going to the end! I have never had a 2 mile run feel that long before but today it felt like it was never going to end, like one of those impossible mazes you cannot get out of!
We eventually made it to the 12 mile mark and at this point, the walking was more painful than the running for me however for dad it was the opposite because of his cramp! So it then worked out that while Dad was pace walking, I was jogging beside him at the same pace and that is how we got through the final mile. As we finished that final mile, we were on the straight path in Hyde Park and we could see the finish. It was so close but considering the pace we were going it was still a way away. But slowly we got past the 800m mark. Then the 600m mark. As we went over the 400m mark Dad began to run again, and I suddenly felt my legs kick into a new gear. Very suddenly the finish line was right in front of us and Dad grabbed my hand. I could feel the tears coming up into my eyes. As we came over the finish line, hand in hand, together as we had started I burst into tears and fell into Dad. We had actually done it.
6 months ago when I agreed to do this I never actually thought I would make it to the end. Until I felt that feeling of getting over the finish line, it had always completely felt like a dream! I was so proud and happy my dad agreed to do it with me as I knew I would never have got round it without him. He really is my hero.
We got our medals, banana’s and free water before trying to make our way out through the crowd to find everyone. We knew Richmond would probably have finished already but we were not sure about Jo. We eventually caught up with Mum and everyone and once again I cried as soon as I saw Mum (I am blaming the tiredness for this!!) and just felt like I wanted to collapse on the floor. We caught up about it then found out that Jo had just finished so we decided to wait till they got back before we left. I sat on the floor and stretched my legs out however I struggled to get back up so had to get Tom to lift me back up! Although my body felt tired, I didn’t feel physically tired, surprisingly I felt okay! Everyone finally was all back so once we had all caught up we headed back home, with our branded hoodies, wooden medals and pride beaming from us.
6 years ago I never would have even contemplated doing something like this let alone actually do it. I am a very different person to 6 years okay, some things for the worse and some things for the better. My determination to prove people and myself wrong about my condition is definitely something for the better. Today made me feel more normal than the average person as not many people are able to say they have completed a half marathon but now I can and if anything, it has made me want to do more. Maybe not another half marathon for a while but who knows what will happen in the future so why not enjoy life to the full now. Today I am proud of where I have come in the last 6 years, and hopefully in another 6 years time I will be even prouder.
The final thing I want to say is a huge thank you to everyone who sponsored me, to everyone that has supported me and wished me luck and of course to my amazing family, especially Dad. Everyone was hesitant at first about me doing it however I hope I have proved to them that I am a lot stronger than I look. The amount I have managed to raise is amazing and will do such amazing things to help others not as lucky as me. So a huge THANK YOU goes out to everyone and my last piece of advice will be that if there is anything you have ever thought of doing but think you cant, just do it because trust me you will not regret it!!!!!
This year the UP running team has Ellen taking part in the Royal Parks 1/2 Marathon raising awareness and money for Understand Pain and CRPS UK. Ellen has CRPS yet has made remarkable progress in her life. I was thrilled when she agreed to take part and join the #UPandrun team!
Here is Ellen’s first blog about training.
Running Blog Take 1
Bio About Myself
Hello Reader! My name is Ellen Williams and this blog is about showing people my unordinary life. I have never been good at writing about myself so I will just start with some key facts:
Name: Ellen Jade Williams
Hair Colour: Blonde
Eye Colour: Green (with flecks of yellow in the middle)
Favourite Food: Strawberries
Favourite Animal: HORSES
Hobbies: Horse Riding (although having your own horses makes it more of a lifestyle than a hobby)
Occupation: Yard Manager (my own yard), Yard hand, Office Workers (for my parents business)
3 Qualities: shy, smiley & sensitive
Any unusual points: I have CRPS (Complex Regional Pain Syndrome) in the left side of my lower body.
My CRPS story is long and I do not want to bore you so again I shall give you the key facts. In April 2010 I went to South Africa with my school for a Sports Tour. It was the best holiday of my life but unfortunately I came home injured after some swelling appeared during one of my matches. I was told it was just some soft tissue bruising so I had a few weeks off then I carried on. The pain got worse and by the end of June I’d lost mobility in my left knee.
Finally I went to see a consultant who had me booked in for surgery 3 days later. I had a routine arthroscopy in my left knee, which found a piece of bone stuck in my knee joint which had also damaged some of the cartilage. That was sorted and I began to heal, just a little slower than normal.
By the December, I had deteriorated drastically and was back on crutches unable to do physio. January and February 2011 was full of pain, doctor appointments across the South of England, scans and uncertainty. 3rd March 2011, my consultant told my parents and I that I had this neurological disorder, which was incurable and may stay with me for the rest of my life. Confusion and sadness do not even begin to describe the feeling of that day.
I did physical physio for about two years to try and “flip the switch back”, as people describe it. This got me so far but it began to inhibit me more that it was helping me so I had to stop. After getting through my A levels and receiving more disappointing news from doctors, that there was nothing else they could do, my mum realised that I needed something else, something different! Which is where Richmond steps in. I have been seeing Richmond for over 4 years now and I could never write down in words how much I’ve learnt and improved in that time.
In the last 18 months I have finished university, moved back home and started full time work, which took its toll. After having it confirmed that the CRPS had spread into my left ankle I had back injections in January of this year. These once again, completely changed my life and as cliché as it sounds I feel like I have been given a second chance and I am determined not to waste this time as we are not sure how long it will last.
So when Richmond asked me if I would run the Royal Parks Half Marathon, I thought why not. It may not be easy but one quality I possess is determination. Determination to prove others wrong but also to prove to myself that I am “normal” but in my own way! Both my Dad and I are running jointly for UP and CRPS UK, which are two very important organisations for me so I hope this will show people that everyone has demons but how good your life is depends on how you decide to live your life. Please donate and spread the word of CRPS!
30th July 2017
After having some time off due to weather, birthday celebrations and pain I suddenly felt in the mood for a run, even after 6 hours of poo picking fields and mucking out stables! Although I was in the mood for a run, that does not mean I was not also nervous. I hadn’t been out for about a month and suffering such a big flare up the weekend before was always going to add more nerves.
A lot of my other runs I have put a point where I would turn around however today I didn’t. The issue with my disorder is that, people think I’m joking when I say “It has a mind of its own” but I’m really not! My CRPS and I may share a brain but we definitely do not think the same so I know I may think “I’ll aim for this point but will try to push further” but my CRPS will think “Right you said your going to that point, so I will give you pain if you go past it”. This is why today I decided to just run, whether I made it 1 mile or 10 miles it didn’t matter as long as I enjoyed the run.
After the first 10 minutes of agony (which always happens, like the CRPS is trying its hardest to stop me) I settled into my normal running beat and through the deep breathing, even managed to put a smile onto my bright red face!
31st July 2017
I felt so good about my run yesterday until I got out of bed this morning and realised that my hamstrings were as tight as a brand new elastic band! What made the pain worse was knowing that I was going to see the personal trainer tonight and that when I told him, he would make me stretch them out properly, which is more painful than just walking! This is the fourth time I’ve seen the personal trainer but it is already starting to make me enjoy being in a gym again.
After my diagnosis, I was told my best chance of “defeating” the CRPS was to do physical physio to break the on going loop that was theoretically happening in my head. I will always be grateful for my 18 months of physical physio because without
it I doubt I would be able to walk without pain, most days, right now however I should never have been told this method would “defeat” the CRPS. Living with CRPS is complicated and confusing as one minute you will look completely healthy but the next you can be on the floor unable to move but that does not mean it cannot be managed.
Although I am good at managing my CRPS now, self-consciousness about it is still something I struggle with. Even though it is a invisible disorder, I face a daily struggle of thinking everyone is staring at me because of it. This was made worse during my physical physio sessions when I really did have people staring at me because I was crying in pain. The more it happened the more uncomfortable I became in the gym, to the point where I didn’t step foot into a gym between stopping my physical physio and starting with the personal trainer, which is roughly about 4 years.
I was frightened about going back into the gym bit there are many differences between the two experiences. Firstly, in the new gym it is just the personal trainer and myself, which means I don’t need to worry about anyone “staring” because there is no one to stare. Secondly, now I am not trying to break a loop, I am trying to better myself as well as I can so if I do struggle with something, I can stop and try again at a later date and it doesn’t matter. Lastly, compared with 4 years ago I am able to deal and understand my pain a lot better, which means overall I can enjoy the experience more as the pain is not as bad.
Four years ago I never thought I would walk out of a gym, feeling good about myself again, but I do now and it gets better each time even if the hamstring pain gets worse!
1st August 2017
Well they say that things come in threes! Today it was the day for physio and I honestly do not know how I walked today because between the run and gym the last two days my leg muscles are screaming everytime I walk. My physio sessions are my time to show off any improvement I’ve made within a few weeks, no matter how small or silly it might seem to others (yes, I did actually jump up and down for joy the day I told my physio I could walk down the stairs normally again!) I’ve been seeing Richmond for 4 years now, but I continue to go because each time I do go I learn more about my disorder and how to manage it. The sessions also give me confidence to try things that I find difficult or painful again for example an exercise I had to stop doing last night at gym because my knee did not like the movement.
When I was doing the kettle bell swings last night, my knee felt like it was grinding together. So when the personal trainer commented on how well the knee was dealing with the movement I quickly replied “No it isn’t!” It frustrates me when I come across something that is difficult because I know there is nothing wrong with my knee but the pain is still real. I talk it through with Richmond and we come up with a few methods to help lessen the threat of the exercise, which means hopefully I should be able to carry out a kettle bell swing in a few weeks!
5th August 2017
So today rather than being physical myself, my family and I travelled up to London to watch the World Athletics Championships. It was amazing being back there again after the hype of 2012! We were lucky enough to see both Katarina Johnson-Thompson (my favourite athlete!!) and also Mr Usain Bolt himself! We had different seats for the morning and evening sessions however that did not seem to matter because where ever we were Katarina was near us, which made me extremely happy!
Watching her high jump was hard as her clear upset at coming out of her main event so early was obvious but that did not stop her. Watching her then win her 200m race was incredible and relatable. Anyone with chronic pain will know what it is like to face defeat in things that we were once good at but just because you’ve been defeated that day does not mean you’ll face that same defeat again the next day. Dealing with chronic pain daily could make it so easy to give up but if you do not pick yourself up and try again you will never know if you can do it again. You may be defeated once or 10 times but to show the strength to carry on that will show everyone that you will never be completely defeated by chronic pain.
I had to do this myself today when my pain dramatically increased while sitting in the seats. Big events like that is something I often struggle with now due to the small amount of room around the seats and the uncomfortableness of the seats but what also did not help today was the sun shining that was beaming down on my knee making it warm up and become sensitive.
I am used to the staring, slow walking and general irritance of my condition however I still worry about it affecting my family. I know my family love me no matter what but I am sure they still have the thoughts of “Oh for goodness sake, not again” when they have to deal with me like that. My mum having to help me to the bathroom. My brother having to let me grip onto his shoulders so that I can get up the stairs. My dad having to act as my crutch on the way to the car.
People often say to me “how can you keep going through the pain” but I think that is obvious isn’t it? If my family can deal with me like that, surely the least the deserve is for me to try. I have previously said before that the one piece of advice I would give to a new CRPS sufferer is that even if you feel you cannot try for yourself, try for your family because they will find it as hard as you are, if not harder! This advice is still valid to this day and is what I will live by for the rest of my life.
7th August 2017
So after the pain of Saturday and working on my feet all day yesterday, it was no surprise that I was still suffering with some pain throughout today. It was mainly within the top of my back and in my ankle, which makes walking and just general
movement of my upper body difficult. Luckily I work in an office on a Monday, so my work was not affected but I wanted to go for a run.
I went back and forth as to whether I should go or not because of the pain as the last thing I wanted was to make the pain last another day bur I got home with the thought of all I can do is try, whether I do 30 seconds or 30 minutes that was going to be my best because I was still trying! Well I went out and carried on running until I felt I couldn’t run any further.
I ran 1.1 miles, which when thinking about my half marathon in 2 months, isn’t much but it showed me I could run through the pain as due to being distracted, the pain after the run was not as bad as before my run! Although a small run, for me tonight was a big achievement which makes me more determined and excited for October!
10th August 2017
So Thursday’s are my day for my weekly personal training session. I was slightly nervous it may not go too well as ironically my personally trainer had a knee surgery on his left knee last week, which meant he was bandaged up and limping. Your probably thinking “Well why would that bother you?” but a complication of my disorder is that it has an over protection trait towards the left hand side of my body. This means if my brain perceives a left knee to be indanger, it will give me pain in my left knee because it wants me to stop what I am doing because I am “in danger”. The left knee that is in danger does not have to be my own, which means if I see someone with injuries to their left leg, my brain will take that as a danger and so I receive pain myself!
So when i saw the huge bandage on my personal trainers left leg, I spent the first 10 minutes avoiding any eye contact with anywhere to do with his leg. However I was slightly surprised when I did not feel anything at all when I walked in and originally saw his leg. This is a first for me, so I carried on!
The session was hard, but in a good way! It was mainly about building up the core muscles and my cardio fitness. He worked me hard but I kept up with everything I told him to do, which impressed us both! I am so glad I have started going back to the gym because it makes me feel so good when I can see the results each week!
The London Marathon now in the past, we are focusing on the next run, The Royal Parks 1/2 Marathon in October. The details of the projects being co-supported with UP will be released soon, however we have two participants bravely embarking on the training journey. This is very exciting, but above all, full of meaning as they face the challenge of getting fit to run 13.1 miles. I know that they will do their best and we will be fully supporting them with a training programme and lots of positive encouragement.
Having just done the marathon for the first time, I know what it feels like to be thinking about running for long periods. However, the reality is never as bad as the thought, like most things. The actual run on the day is the icing on the cake, whereas doing one’s best along the way is success. This is a test. A test of oneself. And this is why it is such an incredible learning opportunity and a way to boost self-belief whilst improving physical health.
I will be documenting these two runners’ journeys and hopefully they will be writing their own blog entries. Sharing stories like this is inspiring to us all. We love to hear about and feel motivated by others’ achievements. They have achieved already by signing up. Now they can clarify their picture of success and think about what that looks like as they begin their experience!
Complex Regional Pain Syndrome (CRPS) is a collection of signs and symptoms that define this particular condition. A syndrome according to the Oxford Dictionaries, is a ‘group of symptoms which consistently occur together, or a condition characterized by a set of associated symptoms’. Therefore, we can clump together any set of symptoms and give it a name, which is really what has happened over the years in medicine. The important point is that when we use the term, we should all know what we are talking about and know what we should look for to make a diagnosis. In other words, a set of guidelines.
The Budapest Criteria delivers guidelines for CRPS, which you can read about in this paper by Harden et al. (2013). The clinical criteria (see below) acknowledge the sensory, vasomotor, sudomotor/oedema and motor/trophic categories that really highlight the complexity of CRPS. Pain is often the primary concern, with people describing their incredible suffering in a range of graphic ways. However, it is not just the pain that causes suffering but the way in which the life of the person changes together with their sense of who they are and their sense of agency seemingly lost. One of the roles of the clinician is certainly to help restore that sense of who I am, a construct that is built from many of life’s ‘components’.
1. Continuing pain, which is disproportionate to any inciting event
2. Must report at least one symptom in three of the four following categories
Sensory: Reports of hyperalgesia and/or allodynia
Vasomotor: Reports of temperature asymmetry and/or skin color changes and/or skin color asymmetry
Sudomotor/Edema: Reports of edema and/or sweating changes and/or sweating asymmetry
Motor/Trophic: Reports of decreased range of motion and/or motor dysfunction (weakness, tremor, dystonia) and/or trophic changes (hair, nail, skin)
3. Must display at least one sign at time of evaluation in two or more of the following categories
Sensory: Evidence of hyperalgesia (to pinprick) and/or allodynia (to light touch and/or deep somatic pressure and/or joint movement)
Vasomotor: Evidence of temperature asymmetry and/or skin color changes and/or asymmetry
Sudomotor/Edema: Evidence of edema and/or sweating changes and/or sweating asymmetry
Motor/Trophic: Evidence of decreased range of motion and/or motor dysfunction (weakness, tremor, dystonia) and/or trophic changes (hair, nail, skin)
4. There is no other diagnosis that better explains the signs and symptoms
Importance of diagnosis
A diagnosis made in the same way, based on the same criteria means that clinicians, researchers and patients alike are all discussing the same condition. This may seem pedantic but in fact it is vital for creating a way forward. Clinicians mus know what they are treating, patients must know what they are being treated for and researchers must know what they are researching. Sounds obvious but let’s not take it for granted. So the Budapest Criteria has pointed all those with an interest in the same direction. Consequently we can focus on creating better and better treatments.
As with any painful condition, the start point must be understanding the pain itself. The following questions arise that we must be try to answer:
why am I in pain?
why this much pain?
why is it persisting?
what influences my pain?
what do I, the bearer of the pain, need to do to get better?
what will you do, the clinician or therapist, to help me get better?
how long will it take?
New thinking, new science, new models of pain over the past 10 years has advanced our knowledge enormously. Understanding how we change, how our body systems update, how we can make choices as individuals, and the practices we can use to change our pain experience to name but a few, create great hope as we tap into our amazing strengths and resources as human beings. Detailing the treatment approaches is for another series of blogs, but here the key point is that the first step in overcoming pain is to understand it. It is the misunderstanding of pain that causes erroneous thinking and action, which we can and must address across society — pain is a public health issue. Chronic pain is one of the largest global health burdens (Vos et al. 2012). It costs us the most alongside depression, and I believe that this need not be the case if and when we change how we think about pain, based on current and emerging knowledge.
“The first step to overcoming pain is to understand it”
This is the reason for UP | understand pain, which we started in 2015 with the aim of changing the way people think and then approach their pain, realising their potential and knowing what they can do. We are about to launch the new website that is packed with practical information for the globe to access online. Alongside this we have plans to create a social enterprise that will purport the same messages, coming from the great thinkers and clinicians who are shaping a new era in changing pain.
In April I will be running the London Marathon to raise awareness of the work of both UP and CRPS UK. You can support the work that both are doing to change pain by donating here
CRPS UK is a registered charity that is focused upon supporting people with complex regional pain syndrome (what is CRPS?). CRPS is often a terribly impacting condition characterised by intense pain and accompanying symptoms that reach into every aspect of the person’s life. Having received little attention, CRPS is gradually becoming more recognised, thanks in great part to the on-going work of the team at CRPS UK.
Georgie, my co-founder at UP, came to see me several years ago with CRPS and therefore at UP we were thrilled to team up with CRPS UK. CRPS has been a condition that I have studied for many years, and having worked with many people living the condition, personally I am honoured to represent CRPS UK and UP in this way, hoping to make a contribution by raising money to allow the work to go on.
Chronic pain is the number one global health burden. Think about all the conditions that hurt and cause pain. This is not just musculoskeletal pain, but all pain — cancer, gastrointestinal disorders, headaches, migraines, pelvic pain, heart disease, post-surgical pain, infections, inflammatory disorders! If pain was understood globally, by society, by individuals, we would know what we can focus upon to overcome the problems and live as best we can in a meaningful way. At the moment this is not the case. There is still a focus on the tissues and pathology as an explanation, but this is not the case. We have known for years that pain and injury are poorly related, and that there is much more to pain to know and work with to create the conditions for change.
This is what we aim to do at UP and CRPS UK. Pain is a public health problem affecting millions in many different ways: home life, relationships, social activities, work to name a few. People need to know the ways in which they can navigate these issues and move onward. The money you give will directly support projects and initiatives to reach this end where we hope to influence the policy makers and healthcare providers, but in essence to help the individual ease his or her suffering.