My Story and the start of the CRPS Hope Foundation
My Story of CRPS
My own experiences of being diagnosed with CRPS, and the challenges I faced throughout my recovery, have led me to set up the CRPS Hope Foundation. The lack of support, information and communication between medical departments, along with a general negativity surrounding the condition, added extra challenges of coping with the diagnosis. Within six months of diagnosis, my life was turned upside down. I went from being an independent 24-year-old PHD student who was playing national level hockey, to being confined to a wheelchair and needing the support of my family for everyday tasks. The severity of the pain and the hypersensitivity of my foot, prevented me wearing a sock or shoe for over 12 months. As time progressed, my central nervous system became affected and the hypersensitivity began to impact my vision and my hearing; meaning I was unable cope with light or sound. My movements were not only limited by the intensity of the pain, but noisy and bright places were a complete no go too, making many everyday situations very difficult. Despite the fantastic support of my family and loved ones, my illness put a lot of strain on me and on those around me and it has been a real journey to get through. Here is my Story........
Help.....Anyone know what's going on?
Over the course of 12 months, I was transferred from Orthopedics, to Rheumatology, to Endocrinology and in that whole time, nothing of CRPS was ever mentioned. At the Pain Management Centre, during each exhausting appointment, a growing list of my current medication was reviewed and, to be quite honest, that was about the sum total of my treatment! When I explained I was in absolute agony, they would just suggest increasing the pain relief I was on. This wasn’t then, and isn’t now the answer.
I knew that I could recover. The laws of plasticity (the brain's way of ever-changing and evolving), meant that if my brain could change one way to create CRPS, then it could definitely change back to no CRPS. I just needed some help to guide me with the 'how'! That said, when I was crawling up the walls in pain it was easier to desperately cling on to anything that may help in some way, and if that meant numbing my whole body with zombie-fieing analgesics then, yes please!
It was in one of these soul-destroying appointments at the pain clinic, where I was first told that, "this was my lot" and, "I must learn to manage it." This was an exceptionally bleak time. I was close to tears constantly for months and was struggling with every aspect of everyday life, trying to cling on to some sort of independence. I was flooded with powerful emotions of grief, anger and desperation as I tried to get through each long day and night in so much pain. On top of this, I tried to keep my pain and suffering a secret from those around me, not wanting to upset them any more than I thought I was, although this constant pretence was exhausting in itself.
I'm not depressed - I'm in pain!
There were may hard things to cope with in this time. Perhaps the hardest things were; not knowing what was going on; the lack of answers from any health professional; and the sheer lack of support. When I asked my GP and professionals at the pain clinic to speak to a counsellor, I got told there was an 18-month waiting list. In my mind, "I would be either better in 18 months or have topped myself by then". I was offered various antidepressants three times by health professionals and each time I told them that I was not depressed. I had a painful problem that was greatly affecting my life and making me upset - reducing the problem of the pain and the impact on my life would stop the low moods. I believe that anyone in my situation or similar has a right to be upset, but I did not believe that taking a greater concoction of medication was going to help me. I am not against taking the antidepressants which have pain relief function or for those that need to lift their mood, but I am a big believer in trying to solve the original problem first before trying to treat/mask the effects of a problem, whilst letting the real problem gradually grow in the background.
Don't Touch Me
I sometimes used think that anyone in this sheer amount of pain should be in a hospital under constant supervision, and that it was inhumane to be suffering so much with no one doing anything about it. On top of the pain, other scary things started to happen; my foot changed into a whole host of colours and the intense sensitivity meant my lower leg was not able to be in contact with anything, ever! It even had to hang outside of the bed covers as it caused too much pain touching the sheets. I have already mentioned, I couldn’t here a sock or shoe and I had to sit with my leg resting on cushions so the foot hung off the edge. The other thing was sheer disgust and hatred I began to feel for my entire lower leg, I wanted to cut it off, and several times I really wasn’t far off trying. My foot/lower leg consumed my head and brain, each night was nightmare, and turning off the lights meant there was just me, my foot and the PAIN!
Recovery in Context
Things stayed bad for too long. I would be lucky if I only got woken up three times a night because of it, so I was constantly tired and groggy. The tiredness and feeling rotten only made matters worse and hindered any kind of coping strategy I could muster. My leg had become so sensitive that even talking about it caused me pain. The vibrations of hopping on my crutches, or the bumps of curbs and cobbles in my wheelchair were agonizing. One common thought I used to have when stuck at home (although it sounds a little crazy now writing it down) was that, if I could swap places of being where I am in that time and a Siberian concentration camp, I would hop at the chance of the camp to escape suffering I was in. Yes it does sound overly dramatic, but that was my reality at the time. I wanted to include these details, not to provoke sympathy or to dwell on how hard I had it (both of which I hate and think are a complete waste of time), but for two other reasons. Firstly, I want anyone reading who has CRPS to understand that you are not alone and you are not going mad; these experiences happened to me and others who have experienced similar or harder times. Secondly, I want to contextualize my story, so that you can see how far I have come and how far it is possible for you to go too!
The Start of Moving Forward
Searching on the Internet resulted in a whole host of negative information that was depressing and completely unhelpful. In fact, I soon stopped looking online at all. I knew that I was young (24/25 at the time), generally very healthy and determined to live an enjoyable, pain free life. Fortunately I was put in contact with Kate, the sister my brother’s friend, who happened to be doing a PhD in Chronic Pain Conditions and transcutaneous electrical nerve stimulation, better known as TENS. For the past two years, she has provided me a wealth of information and support through frequent email contact. It is Kate’s support and direction that inspired me to start The CRPS Hope Foundation. She was the start of my recovery process; having the email support of someone with a greater understanding of CRPS and its impact was fantastic. Kate helped me understand some of the crazy things that were going on, with temporarily surrendering my independence and with accepting help from others so I could focus on getting better. I paused my PhD and learned to stop putting myself under so much pressure for not being able to do what I wanted.
Beginning to Understand
Through Kate, I was put in contact with Tim Beames, a physiotherapist who specialises in CRPS and Chronic pain conditions. Tim works with the NOI Institute, who are looking into new and innovative ways to approach chronic pain conditions, like CRPS. He also sees patients privately at his clinic in London and over Skype when travelling is difficult. Tim's approach is slightly different to others in that he looks at the whole individual and the whole picture, taking into account different things that influence CRPS and ways to address them.
After my first appointment with Tim (which 4 hours spread over two days), I started to understand things a little more clearly. He set things out in simple and understandable ways, some of which I can share with you on this website. It was a relief to know that there is an explanation for what was happening, and that there were lots of things I could do to start helping myself. Some of the other symptoms I had been experiencing, but had been too worried to mention my GP incase they thought I was a hypochondriac, were explained. To give an example, we talked a lot about the over excitability of my sympathetic nervous system (the go go nervous system in out evolutionary 'fight or flight' make up). This is involved in many processes like the production of stomach acid, hence the constant indigestion I was experiencing and the release of adrenaline that would have me buzzing at three am in the morning. From talking with Tim I learned there are lots of ways I could help myself combat this, example of which are shard in the 'Moving Forward' section. If I could notice when my sympathetic nervous system was hyperactive, then I could counter-act it with a range of methods to calm it down and reduce the pain feedback it stimulated. Those of you that have done your CRPS homework will know that the previously CRPS was known as Reflex Sympathetic Dystrophy, or RSD. This basically means that the sympathetic nervous system is over-stimulated and feeding back into the pain system. I think the name was later changed to CRPS as they started to realize that this wasn't the whole picture, although it remains a common problem in many CRPS patients. They also discovered that more of the body's systems were involved, such as endocrine (hormones) and that even the emotions and stress influenced the pain experienced in CRPS. See Moving Forward Section.
A Marathon not a Sprint
Another important thing Tim explained to me during that first appointment was hard to hear but extremely important. This was that ‘there is not a magic pill or mystical quick solution to getting better’. It was important to accept that recovery would be a marathon, not a sprint, and that although getting better was possible, it would take time and would be a gradual process.
An analogy we used was a boulder rolling down the dark side of the hill. First, I had to stop the boulder rolling, then start the long trudge back up to the top of the hill pushing the boulder. Once I arrived at the top into the sunshine, I had to start moving down the other side of the hill. The boulder would pick up it's own momentum and be carried forward on its own accord as it gathered speed into the valley of recovery.
This has how the profile of my recovery has been. It took a lot of energy to stop the boulder rolling, to stop having flare ups (well at least reduce them to the minimal), to prevent a boom bust cycle, and then slowly, slowly increase what I was doing to build up activity whilst keeping below the flare up threshold. See Pacing and Graded Exposure section. So far all of Tim’s time expectations have been spot on, but it has taken a lot of dedication and daily hard work to put into practice what I learnt, to develop my own strategies to overcome everyday challenges, and to learn to pick myself up after the inevitable flare ups or hard spell
Specialized Help & Support
Bath Royal National Hospital for Rheumatic Diseases (affectionately known as the The Min), specialises in treating patients with CRPS. They see outpatients but also have an excellent one or two week impatient stay, during which there is a great team of specialist physiotherapists, occupational therapists and doctors that are very knowledgeable about CRPS. It is an intensive couple of weeks, but I found it to be a very beneficial time. The main focus is on physical rehabilitation through one to one sessions in the fantastic hydrotherapy pool, and also with the physiotherapists in the gym. Through individual sessions with an occupational therapist, I was able to devise strategies for everyday living with CRPS. Talks on pain medication and their usefulness was also particulaly informative, offering alternatives and choice. It was also really great to meet, talk and get to know other people with CRPS.
Getting referred to Bath shouldn't be difficult, although as my local doctor and the pain specialist at the local hospital didn't really know who, what or where they should refer me, it took an unnecessarily long time (over a year). If you want to be seen at Bath (and I recommend it), the best thing to do is go on their website, which can be found on the Links page of this site. Here is a link to their website which contains the self-referral form. This can then be printed and completed by you then take this to your GP for them to sign and send off for you. Easy peasey!
There are plenty other things I should mention that have been hugely influential in my recovery, I have outlined these in more detail on the Moving Forward pages of this website. One of those is psychotherapy with Daniela and I cannot understate the benefits of Mindfulness, yoga and meditation on calming down my nervous system making it possible to focus my attention on rehabilitation. Also throughout all this I have learnt so much about myself, even describing an old me to a new more enlightened one.
Rolling Down the Hill
The summer of 2015 marked two and a bit years after I had my first appointment with Tim and the start of my recovery. By then I had come a very long way. Walking around the house aid free, although still using a crutch or a stick outside the house for longer distances. I could stand for longer, walk further and be pain free for half days at a time. Wearing socks and shoes ceased to be aproblem and my foot became a loved and cherished part of my body that didn't over-react to touch or even the odd knock. I continued to walk further and further aid free and increasing my endurance in other activities. Sound no longer caused a problem, and I could read and concentrate for increasing periods of a time. I restarted my PhD and started up own bussiness part time. My life was no longer ruled by the pain and I believe I am now rapidly rolling down the hill and getting faster and faster as my recovery gets quicker and quicker all the time; so watch this space............
Recovery all the way baby!!
Its January 2016 and wow what a difference six months can make!! I am now pain free 95% of the time, with only the odd bout when I really do over do it! Many days I take no form of pain relief and experience no pain what so ever. I can now walk a good mile and a half to two miles completly aid free, with a happy foot and smiling soul!! I cycle up to 45-60mins and am sure I can go further but havent had chance to test the boundaries yet! I am back working full time and completing the final stages of my PhD in my spare time (which is hard to find!). I have even started playing hockey in my living room (to my mums scorn)!! I am not at the stage where I am walking up mountains and skiing down them just yet but its in the horizon and I plan to be back on the hockey pitch next season! I have even booked in to do an triathalon with my bridesmaids in July (Raising money for the CRPS Hope Foundation of course!!).
As I have continued to improve my recovery has grown momentum of its own. The pain boundary/threshold of what I can do has risen allowing me to do more and stretch my limits a little more without over stepping the 'flare up threshold'. The more I have learnt to listen to my body and calm it down when I get anxious, over stimulated or in pain, the quicker I can build up again. I am pushing my boundaries all the time whilst always being careful not to over step the mark. I continue to do relaxation exersizes, yoga and mindfulness daily, and if anything they make me happier and more present and in touch with the world around me. In my mind I still have a away to go till I get back to the activity level I once was, but for all intense and purposes I am pretty much recovered. The CRPS I once had does not stop me doing anything I want to do. Yes I get tired and have to a rest some days but who doesn't and sometimes I have to plan a little more carefully. Overall I am pretty much pain free and liberated, enjoying life all the more and appreciating the small things that were once so challenging!! My favourites are walking down the road talking on a phone, having a coffee on the go and holding hands with my lovely fiancee. All things that for years were impossible! All the hard work, hard times and battles have been worth it just for them!!
A brisk walk in the beautiful Northumberland Countryside- Jan 2016! On the Beach March 2016.
Sustained Recovery and enjoying life ahead!
I walked down the aisle September 2016 on my wedding day in high heels!!! Back playing hockey January 2017, 90 mile Edinburgh to Newcastle cycle ride summer 2017 with my husband Mattt. I set up my own bussiness in 2017 in property development which I continue to this day and after much effort I completed my PHD part time in January 2018. In June 2018 my wonderful little girl Juliet was born and she is due to have a little sister in May 2020.
I believe all the things I have learnt through my illness have made me a more patience and empathetic person and hopefully a much better parent. No one would ever choose to be ill and spending 5/6 years of my life wherby pain, suffering and restrictions was on the daily agenda many of things I have achieved now seemed impossible back then. There is hope for everyone suffering with any pain condition, if I can make a sustainined and fulfilling recovery you can too! Keep positive, live in the moment and try not to get to hung up on what you cannot do, embrace each achievement and small step for what it is! Make each small goal achievable and before you know if you will be reaching and doing the things that you never thought were possible! And believe me you will appreciate them SO much more!!