An insight in what it is like to live as a young person with a chronic pain condition that has no cure. Follow my journey with Complex Regional Pain Syndrome by reading the posts below.

About Me

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I suffer from a debilitating chronic pain condition called Complex Regional Pain Syndrome. Facebook: @LivingWithCRPS

Introduction

About

Complex Regional Pain Syndrome (CRPS)  is a chronic pain condition characterised by pain that is greater and lasts a lot longer than would ...

Friday, 18 May 2018

2 Paramedics from Gloucester Spend 5 hours with Patient to Save her from a Mental Health Crisis

When a 21 year old girl is suffering a mental health crisis, but medically doesn't need A&E, two paramedics from Gloucester take responsibility for the situation and stay with the patient for 5 HOURS....

©Nick Obank - Helena Stone

On the 2nd of May 2018, Jimmy and Andy from South West Ambulance Service, received a call out from control, to the University of Gloucestershire, Cheltenham. They were informed that it was a 21 year old girl who was suicidal and suffered from a chronic pain condition, CRPS. 

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When they arrived with me at 9:30am, Jimmy immediately made me feel safe and that he and Andy were going to listen and help me. Something I hadn't felt in the few days leading up to the event. They sat there and listened whilst I explained the situation to them, they immediately looked up what CRPS (Complex Regional Pain Syndrome) was and looking at ways they could help me.

The situation leading up to this call out in short, was a perfect storm. I had suffered bullying, online abuse, stress and a CRPS flare up. Leading me to be bed bound from the Monday. I hadn't eaten since Monday late morning, I had been throwing up due to pain and distress. Unfortunately for whatever reason the seriousness of my situation had not been realised by the university. But at this point that didn't matter, I was safe and my road to recovery had started.

In the FIVE hours that followed, Andy and Jimmy did everything they could to keep me calm and feel safe. They sat there listening, telling me stories and listening to my stories, from about my work with Alex Chalk to my kayaking days. They allowed me to become distressed when I needed to but were always able to calm me back down. Providing entanox for pain relief for the CRPS. They were telling me how brave I was and how impressed they were with what I had achieved with my CRPS campaign.  By lucky coincidence Jimmy was a recent graduate from the University of Gloucestershire, so he went round numerous members of staff, to make sure the seriousness of the situation was clear to the university and to make sure I got the support I needed from the university.  He didn't have to but he did.

Now it is important to emphasise that medically they could have left me and there was not much point taking me to A&E, but they didn't.  They decided that I had been through enough and needed moral and possible medical support until my mum arrived (she had driven up from home). Telling control that they had to stay with the patient. This is going way above their call of duty.

They sorted out my regular medications, phoned my GP, spoke to my worried parents and more importantly gave me the privacy and support I badly needed.

Jimmy managed to get a senior member of the welfare team at the university to come and see me (who consequently has sorted out the university situation) and waited until my mum turned up.  We sat there talking and both Jamie and Andy were giving me words of wisdom and encouragement, that  I did have a future, a short break at home and I should come back to university to finish the academic year. Some of which in the weeks that have followed I still remind myself of. I won't disclose what they are, you will have to ask Jimmy and Andy if you want to know! Both came up with the suggestion that I could be autistic. This suggestion could potentially change my life forever as it made me realise that there may be a reason for a lot of things. To me a label means help and support, the potential support I could get with this label could change my life. Again going beyond their remit and call of duty.

At 2pm my mum arrived, they could have left me with her but they didn't. They stayed and waited until a decision was made as to where I was going and whether I needed any assistance to get to the car. Eventually at 2:30pm, 5hrs after they arrived Andy and Jimmy managed to transfer me from my bed to the car, meanwhile giving advice and support to my mum.

I fully believe if it was not for their actions that day and turning up when they did, I probably wouldn't be here or be able to write this. They saved my life and my future, they gave me hope. Every time I have struggled since I just remember what Andy and Jimmy told me and how much they cared, and it cheers me up a bit and gives me hope. 

Paramedics are trained in treating medical emergencies, such as a heart attack and not really how to deal with mental health crisis. They went above and beyond their call of duty that day and I feel their actions are to be commended.

As a consequence of going above their call of duty, I am on the road to recovery and my future looks a lot brighter, in terms of mental health. They gave me the perfect starting place to make a recovery.

Jimmy and Andy from South West Ambulance Service, Gloucester, thank you so much!!😀

Helena 😊




Saturday, 28 April 2018

21 year old with a rare chronic pain condition takes her fight to Westminster

ⓒ Chris Pearsall Photography 2018


A university student from Islington, London is taking her mission to be believed to parliament after being told her pain was "all in her head". Helena Stone from North London suffers from Complex Regional Pain Syndrome...


Helena, a 21 year old Gloucestershire university student, with a rare chronic pain condition CRPS, which has left her with a lot of problems a 21 year old just should not have to face!

In 2013 Helena was 16 and had just finished her GCSEs and was an enthusiastic kayaker. She was competing in her first national division three slalom race in Wales when her boat capsized and her foot got stuck. Her boat went one way, she went the other and in the process twisted her knee. After a trip to A&E it was confirmed that no major damage had been done and that she should rest it and spend the next two weeks on crutches.



However it was not quite that simple. The pain in Helena's right knee did not go away, after physiotherapy for four months she was still reporting knee pain. After an MRI scan came back clear in January 2014, Helena was sent back for more physiotherapy and told it will settle over time. In December of that year, Helena received a steroid injection that caused her knee to swell, become bright red and sensitive to touch. These along with the chronic pain were the symptoms of Complex Regional Pain Syndrome (CRPS).

In 2015 despite the agonising pain that CRPS can cause Helena finished her A levels gaining a place at Loughborough University. However this was short lived as Helena's CRPS worsened in early 2016 leaving her with another  neurological condition called dystonia, whereby she could not move the muscles in her leg. The pain quickly spread to her foot. She spent most of 2016 in and out of hospital for treatment and bed bound.
It wasn't till she found the sport of adaptive rowing that her condition improved physically overcoming the dystonia but was still left with the agonising chronic pain.


In september 2017, Helena joined the University of Gloucestershire in Cheltenham to try and get her life back on track. This was always going to be challenging but no one expected the challenge ahead. In October 2017 Helena's condition deteriorated again, leaving her with ulcers. This led to a trip to hospital to check they were not infected and in quite severe pain. The doctors were pretty unsure what to do and many had not come across CRPS before, this was just the start her fight to be believed.

In stays in hospital in  both January and March 2018, Helena's condition was met with suspicion. Doctors did not know what CRPS stood for let alone how to treat it, her pain was not believed. On several occasions she was told her pain was psychological and "all in her head" despite the visible physical symptoms. One doctor went as far to suggest that she should come off her medications immediately. She was told that she couldn't be in the amount of pain she was describing.




It was because of this treatment that Helena took to awareness raising. Appearing on Anna King's show on BBC radio Gloucestershire and  in a report on Channel 5s News at 5pm. The Facebook summary went on to go viral with nearly 90k views, over 1.4k shares and over 400 reactions..



She also went to her local MP in Cheltenham, Alex Chalk. Who took great interest in her story and what has happened to her. As a result he has invited Helena to parliament to raise awareness amongst MPs with the intention of taking the issue higher. 





Friday, 13 April 2018

When CRPS goes viral...

Hi All,

I thought I would update you all of the things that have been happening over the last few weeks and what I have planned!

It all started in the last week of spring term at university, when I spoke to Gloucestershire Live who write for the local papers in Cheltenham. I spoke to them about my recent experiences of Cheltenham General Hospital and, how I had experienced what many CRPS sufferers experience which is ignorance of the condition and doctors calling it "psychological", despite showing the physical symptoms. This went out on the 22nd of March, link below:


I thought this would be it in terms of media, but how wrong was I!! The following morning I had messages from lots of journalists, news agencies and also BBC Radio Gloucestershire. Once I had sifted through them, I picked the ones I wanted to follow up. I chose to do an interview with Anna King on BBC Radio Gloucestershire. This was pre-recorded on Tuesday 27th of March and released on the 28th. It was an amazing experience as I got to see what radio studios are like and what is like to do a proper radio interview! We talked about CRPS and the ignorance of medical professionals when it comes to the condition, using my recent experiences as an example.  Rebecca from the charity CRPS UK did a live interview after it came out on the 28th to explain more about CRPS.


Following that interview being released I was then contacted by various tv producers and journalists. Two of whom were channel 5's health correspondent for the national news and also by ITV West Country. I didn't really expect them to follow through with it but again I was proved wrong!

On Tuesday 3rd I received an email from channel 5 news asking if they could come and film that day or possibly the next day. Once a few things had been sorted at their end they came to film that day. The process took about 2hrs to complete. They asked me lots of questions about CRPS, my life and also the problems faced when interacting with a medical professional. It was really enjoyable and I was very excited to see the finished article on the news at 5pm that day.

The following day they released the synopsis video onto their Facebook page. I made the CRPS community aware and they got sharing on their social media. I periodically checked on the viewing figures and it kept going up, by the evening it was on 30k views, it went up again to 60k views and the shares eventually hit over 1k and the viewing figures kept going up and are now over 80k.  I am still speechless as the speed in which it went up and how it was received all over the world.  

Channel 5 synopsis report

On the 10th of April, ITV West Country came to university to film.  I was not really sure what to expect after filming with channel 5. However the process was very similar and some of the questions were similar but we also looked at other areas of CRPS. They also did an interview with one of my friends who had been in the ambulances and on various trips to hospital, so we were able to get a friends perspective on some of the treatment I had received and also what it is like to have a friend with CRPS. They are still in the process of interviewing some medical professionals so the report hasn't gone out yet but we hope it will be aired by the end of the month, I will post the link on here when I can.







On the 12th of April I had a meeting with MP Alex Chalk (Cheltenham). Alex has been following my story since he met me at a talk at university. He was very keen to help me with my awareness work and was very encouraging. He invited me to hold an awareness event in Parliament so that I could further my awareness and make more MPs aware of what CRPS is, how they could help constituents with the condition and also hopefully talk to those who can influence policies that may effect CRPS sufferers. We are hopeful that this event will happen in June or July. I am honoured that Alex has given me this opportunity and very thankful to have his support.


So that is a quick journey through my life in the last few weeks. Its been absolutely amazing and I'm still running on adrenaline! I am waiting for my CRPS to seriously flare up now in retaliation!! Lots of people have been asking so what next? Well here is what I can reveal,

In the next few weeks I have got a few more leads to follow up in terms of media, hopefully we will have the release of the ITV news report.  On the 27th April I have the first meeting of the society I set up with two friends, its called the Disability Welfare Society and is the first disability support society to be set up at the university. The primary aims of the society are to provide a place where students can come together to share experiences and support each other. But also for people to come together and raise awareness of their chosen conditions. Very exciting!!

I will keep you all informed when I can, thank you for all the support!

Helena



Monday, 5 February 2018

Mental Health & Chronic pain

As #timetotalk day passed I realised mental health was an important area that I had not written about as part of my CRPS blog....

In this blog I will talk relatively openly about how chronic pain has affected my mental health in the hope that it brings comfort to those in a similar position, but also to highlight the impact of chronic pain on mental health. A long the way mentioning how I overcome some of these problems. For me chronic pain has brought two problems with my mental health, anxiety and depression. Often clumped together but in this blog I want to separate the two:

Anxiety has always been part of my life since a very young age, however it was never as bad as it has been since developing CRPS. Having chronic pain and a disability brings on anxiety about the future for example, I regularly question what future I have with CRPS. When I'm struggling to get through a basic 3 hour day at university I wonder how I would get through a standard working day (i.e 9-5)? This anxiety is nothing to be ashamed about and is perfectly normal. Even thinking not that far ahead, I regularly wake up anxious about how the day is going to play out, will I be able to do what I need to? Will I have to let down my friends again and not go out for lunch? These thoughts are all as a consequence of CRPS, the ultimate question is, what will my CRPS throw at me today?

To get round these anxieties I have to have some sort of contingency plans, for example if I cannot complete all my university work that day then I have a few days spare to make sure I can complete it on time. This to a certain extent works, but anyone with anxiety will know that your mind still races. To answer my anxieties for example about my future, I have spoken to those around me. I've recently had conversations on the topic and the working world is a lot more flexible than it would appear. With technology expanding and evolving quickly it will be easier and easier to work remotely. Therefore the standard working day will be significantly different to the traditional 9 to 5. Therefore it is possible to help relieve anxiety.


Depression has only really come into my life since 2016, those who have read my blog since the beginning you will remember my life changed dramatically in February 2016. For anyone who has gone through such a life changing time like that is likely to suffer from depression at some point. I still struggle to come to terms with the things  I can't do such as kayaking or sailing which were such big parts of my life during my school years. I regularly have to turn down opportunities for example going out with friends because I need a rest day or my CRPS is flared up. This may seem small to those reading without chronic pain, but imagine having to do it  on a regular basis and, feeling like you've let people down. All these things can build up and therefore you start to see a negative view on the world.  

I have tried a few of methods to deal with my depression but the most effective method is talking to people. When I am feeling depressed, being able to talk through those feelings with someone whether it be a close friend, medical professional or family member, I find most effective. They are able to see what you are saying and in some cases will know some of the background as to why you may be feeling that way. They are able to provide positive suggestions as to how you could get through a particular episode. Finally they are able to provide a listening ear and just by explaining why you feel a certain way can help to relieve those negative feelings.

I hope that in this blog I have broken the ice about mental health and provided a small insight into how depression and anxiety have effected me and how I have started to deal with them.  I also hope if you are reading this with chronic pain and mental health problems that you have realised you are not alone and that this has provided some reassurance.

Thursday, 25 January 2018

University an update

Sorry for the lack of posting, it’s been a while!

Since September 2017 I have been studying BA Education  at the University of Gloucestershire (FCH campus).  The first term went really well and I have made some life long friends. I have been really enjoying my course and learning about all aspects of education from psychology to government policy.

Unfortunately I have been admitted to hospital on two occasions due to CRPS, however with the help of my family and friends I have been able to carry on. For those that don’t know I’m back on crutches although walking. It was difficult to accept at first but now has become normality for me.

University with a disability is challenging, but for anyone considering it, go for it. The amount of support available varies from university to university. So do your research! Student finance have DSA (Disabled Student  Allowance) which will help pay for various pieces of equipment and university support services. For example I have the option to have note takers in lectures when I can’t attend. I wasn’t sure how people would react to me being disabled but I have had an overwhelmingly positive one. So if you’re considering it you will find friends don’t worry.

Outside of  university work, I have been working quietly on my CRPS awareness work. Most noteable has to be getting the backing of Alex Chalk MP (Cheltenham). In early January I had a meeting with him and he agreed to help move my work forward, he gave me a few ideas and also offered to turn up to any events I organise in Cheltenham. The second thing I have been working on with a group of friends is a university hidden disability campaign and society. We’ve had an overwhelming amount of support from friends, staff  the Student Union and Alex Chalk. It is something that I look forward to working on in the next couple of months, I can’t say much at the moment! Finally I have been asked by London Youth Rowing (LYR) to attend their National Indoor Junior Championships in March as a VIP. This was in response to raising over £600 for them by doing the Great River Race last September. So thank you all who donated. I am really looking forward to seeing some of the work they do, as I am very interested in going into youth work myself after university.

So in the coming months I’ve got a campaign, society, LYR event in March and also helping out at Artic One’s triathlon and para-Triathlon festival in may.

I will keep you updated!

Helena


Thursday, 14 September 2017

Anything is Possible with CRPS - Great River Race

On the 9th of September, 330 crews descended on the River Thames for the Great River Race. The Great River Race is a 21.6mile marathon from Millwall Dock to Ham in Surrey.

One of those crews was the Royal Dolphins from the Royal Docks and coached by London Youth Rowing. 
The Royal dolphins are a very small disability rowing group made up of six people...



I am part of the Royal Dolphins  and I have been rowing with them for nearly a year.  Throughout this year I have been training to take part in the Great River Race.

We started at Greenwich  pier where our boat (called a Cutter) was docked.  The river was very rough and we were towed by our safety boat to near Millwall Dock, this is where we started our journey, passing a large ship which marked the start line. The bridge count began, there was 29 bridges between us and the finish.

The first big landmark was Tower Bridge and it was amazing to go under such a historic bridge. This was also the first time we saw and heard the crowds of people who had come to watch.  We rowed at a steady pace and soon enough we were going past the Houses of Parliament and Big Ben. Everyone was having a wonderful time and the water had started to calm which made rowing slightly easier.

Battersea Bridge marked the halfway mark and by this point my CRPS leg was starting to complain. I kept moving my leg trying to get comfortable. I was determined that this was not going to stop me, there was no way I was letting my crew down.  Knowing we were halfway the  adrenaline started pumping through my body and I had a burst of energy.

This burst of energy  got me all the way to Chiswick Bridge, we had been rained on and we were now starting to tire. My CRPS leg was going all kinds of colours, my foot was swelling slightly and my lower back was killing. We kept up the steady pace as we needed to get as close to Ham as we could before the tide changed.

Unfortunately the tide changed a few miles from the finish, the water all of a sudden felt heavy and we we were having to row harder to keep the boat moving. By this point the surroundings were very rural and there were not many people around.

There was a sigh of relief when we eventually went under Richmond Bridge, the last Bridge! We all came together and rowed the best we have ever done, over-taking several crews who had gone  out too fast. We could hear the tannoy at the finish party and the gun went, we had finished!

I was overcome with emotion and I ended up in tears. I was so happy, proud and shocked that I had managed to do it.

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This time last year I as basically bed bound and in a wheelchair. In a year I had turned it around and taken control of my CRPS. I've learnt that CRPS doesn't mean can't do something. You can, all you need to do is adapt, as a crew we all had to adapt to row the 21.6 miles. I'm determined that CRPS will not stop me and I will constantly adapt to make sure things happen. I hope this proves to anyone with CRPS, you can do it!

Tuesday, 18 July 2017

Sport & CRPS - A Recipe for Disaster?

Sport and CRPS could easily be a recipe for disaster but if you find the right sport it can be the complete opposite!

Finding the right sport is a long and difficult process. The main problem I came across when finding a sport is CRPS is not recognised.  CRPS does not qualify under the Paralympic classification rules, so finding a club that is able to meet your needs can be quite difficult. However if you do your research and send a few emails, eventually you should be able to find a sport that is near you that you can try.

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In September  last year I started researching different sports recommended by other CRPS sufferers,  these included, rowing, swimming, archery and wheelchair racing.  I was keen to try rowing as this was a close as I was going to get to my old sport of kayaking. After a few emails I got myself a disability rowing taster session at the Royal Docks near City Airport. This was very exciting for me as it was a chance to get on the water which I had enjoyed so much when kayaking. The taster session which was on land in the tank (a swimming pool with a fixed rowing boat)  went so well I went back for another one where I was able to go out in a boat on the water. By the end of this I had fallen in love with rowing! The following session I was introduced to the Royal Dolphins a small disability rowing group at the Royal Docks, this was perfect for me and since November last year I have been rowing weekly with the group. Not only does this mean I'm back out on the water I also now have a great group of friends. I'm still in pain and it still causes my pain to spike even after doing it nine months with adaptions.  I struggle to row for more than 5minutes in certain boats.  However I have found a boat called the Cutter where I don't have to use my legs at all which is perfect for me.

On the 9th of September I will be taking part in  The Great River Race  with the Royal Dolphins. This is a 21.6 mile race down the Thames from London Docklands to Ham in Surrey. We will be completing the race as a six man crew in the Cutter ( the boat where I don't have to use my legs). This is a great challenge for myself as I have only spent an hour at most in the Cutter and this race takes over 3 hours to complete! However I want to prove that being in chronic pain does not mean you can't do something.

One thing I have been working on is desensitising my leg to water. When my leg was at its worse last year I couldn't tolerate anything touching it. In January I started the process of desensitisation to touch, allowing me to have certain things touch my leg without causing too much pain. With a lot of hard work I managed to desensitise my leg enough to allow me to go swimming.  So in the last week I have started swimming twice a week, this is perfect for me as it is non weight baring. This means I can use and strengthen my leg without causing too much pain, unlike walking.  After not being able to swim for 4 years because of my leg, I was extremely happy to be back in the pool. What made it even better still is that I could get from A to  B in less pain than if I was going to walk the same distance.

I'm still in pain and have days where I cannot walk at all, but I have found two sports that I can do on a weekly basis. This has had a really positive impact on my life both physically and mentally. Physically sport has complimented the work I do with my physio and helped strengthen and desensitise my leg, meaning I can do that bit more on a daily basis.  Mentally I am a lot happier in myself and I have something to look forward to three times a week.

I hope this proves that CRPS and sport is not necessarily a recipe for disaster and that if you are a CRPS suffer reading this that you will give sport a chance!