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!

What do you mean there is no cure?

It feels like someone is twisting my ankle, stabbing inside my knee and suffering from extreme sunburn on my entire leg. Now imagine being told there is no known cure. 

Complex Regional Pain Syndrome (also known as RSD) is regarded by many as the most painful condition, registering 46/50 on the McGill Pain Scale.  

Given this you would expect doctors to have figured out a treatment plan that cures the condition. But sadly you are very wrong, doctors still haven't found a cure. This is extremely frustrating for sufferers as there is no clear way out or obvious return to how life was before the condition struck.

Ok, so there is no cure but, surely they must have a standard treatment plan that reduces symptoms and lowers the pain levels.  The answer to that is no. There are treatments but none of them are guaranteed to work and often use drugs that you wouldn't associate with chronic pain.

I've been through all of the major treatments available to me including ketamine infusions, spinal blocks and different medications since my diagnosis in late 2014. As none of these treatments have kept my symptoms under control for any significant length of time, I and many others are now reliant on the very small studies that are being done with no guarantee of it helping, or success rate. This uncertainty is no good with a condition such as CRPS (complex regional pain syndrome) as it can be made worse by anxiety and stress.   Not only that putting yourself through treatments which require sedation and long term medications have risks  and nasty side effects.

Sometimes I want to give up and not put myself through it as there are no promises of treatment helping but if I don't try, then I may never get relief. People kept asking why I was in hospital for treatment on my birthday, well with the condition as it is, I had no choice, I was desperate for some relief.  It is only until you experience it will you truly understand why I agree to treatment, but I hope you get some idea from this post. 

Pacing

Spoon Theory (Christine Miserandino: 2003) is a metaphor used to explain how much energy those with disabilities have to do everyday tasks, with each spoon representing a unit of energy. Each day is different as my energy levels differ depending on my pain levels and therefore I have a different number of spoons available. Everyday tasks plus those that are required to keep my  CRPS under control, for example physio, have an allocated number of spoons. If I run out of spoons for that day then I have run out of energy and need to rest.

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A couple of weeks ago I had a ketamine (yes that is horse tranquilliser) infusion in hospital to try and bring my baseline pain levels down. Unfortunately it did the complete opposite and made everything worse and I currently have no function at all in my leg along with higher pain levels. This has made my mobility (temporarily we hope) more impaired, using crutches and wheelchair to get around. As a result increasing the amount of energy needed to do basic tasks and the number of spoons needed to do them, with a limited supply of spoons (energy) available.  

However this led to me missing two weeks of university and I wanted to go back. Knowing I would be dependent on a lot of help to get around campus. When I got there, I had meetings with staff at the university and found out what help was available to me.  It was clear that I could come back to university although it would be highly challenging emotionally and physically. There were other options available to me such as taking a year out and returning next January and continuing from where I left off. 

I had a very difficult decision to make, with positives and negatives of all of them. The question I had to ask myself was:

Do I currently have enough spoons (energy) to deal with university, and the current emotional and physical stresses of dealing with my CRPS?

The answer: No.

So after weighing up the options and spending the day at university, I decided to take a year out. This was an extremely difficult with my head saying take a year out, and my heart saying stay at university.  

I hope to make the most of the time I have got to sort my leg out, so I can return to university in a much better condition!