Here is my story...

 

Last October something happened that dramatically changed my life for good.

 I have a rare chronic progressive disease called Complex Regional Pain Syndrome also known as Reflex Sympathetic Dystrophy. 

A normal Friday morning sitting in first lesson, a sudden stabbing pain rushed through my right arm; but it didn't go. I had instant swelling. Come the end of second lesson  I couldn't move my arm as the pain was excruciating. Reception put it in a sling, said to rest it and if continued to get it checked out as something was not right. After a couple of days resting it, the pain seemed to ease. Later that day my mum took me into London to see a film. Everything was going fine until my arm swelled dramatically and started to change colour. I was in tears and my mum said " thats it, we're going A&E". There they said it was a soft tissue injury; a couple of weeks and it will be back to normal. I was put on neurofen and later told by my GP to also take paracetamol. Eventually I became violently ill and found out when i stopped them they done nothing for my pain.

A month later, I was finally referred to a specialist Rheumatologist. As soon as I walked in, looking at my arm his mouth dropped. He Immediately got up CRPS on the internet. After blood tests and x-rays I was diagnosed. I was shocked.

CRPS is a chronic, progressive disease. It is a malfunction of the sympathetic nerve (part of the nervous system) and the immune system. They respond to tissue damage from trauma, such as an accidental injury or medical procedure. Even a minor injury, such as a sprain or deep bruise, might trigger CRPS causing nerves to misfire, sending constant pain signals to the brain. It can spread to any limb in your body. There is NO cure and it is hard to treat, but you hope to get it into 'remission' where it is controlled.

The symptoms are -

• .burning or stabbing pain
• .increased skin sensitivity
• .changes in skin temperature; warmer or freezing cold.
• .changes in skin color: often blotchy, purple, pale, or red
• .changes in skin texture: shiny and thin, and sometimes excessively sweaty
• .changes in nail and hair growth patterns
• .swelling and stiffness in affected joints
• .motor disability, with decreased ability to move the affected body part
• . thining of the bone

Come December after having scribes for my mock exams and  several pain specialists and physio-therapists offering -accupuncture, surgery on my neck ( but not evening bothering to make a clinical assessment!) and not having physio often enough; I still wasn't recieving any good treatment. This meant my chances of a full recovery was getting slimmer.

 Come February my condition had spread from not just being my right arm (from my finger tips to ellbow) but to my right leg. This made things even more difficult physically and emotionally. It was now difficult to walk meaning I had to use the lift at school and have scribes still for the up coming summer exams. School life was getting harder. I wasn't going to give up yet though.

About a month later i developed the condition in my left hand, meaning I only had one limb that wasn't effected. But I couldn't give up on everything. Being in year 11, I was going to make sure I sat my GCSE's meaning attending school even on the days when I was in an unreal amount of pain. 

 Throughout all of this we had been fighting for me to recieve specialist care at the Royal National Hospital for Rheumatic Diseases. After such bad care my consultant decided that it was the best chance of getting into remission. The first time round my PCT disagreed to approve the funding of £8,000. Second time round they agreed only for assessment at a place of my choice; obviously Bath. There they decided they would fight the case for the funding as they thought I needed the treatment at their hospital. Finally in late May, the PCT agreed to give the funding for treatment and a month later I was going down to Bath for a weeks intensive physio-therapy!

The treatment was hard and emotional. With at least 3 hours of physio a day and 2 of physcology it was draining. I had a team of about 5; dedicated staff who gave expert care. Looking back and seeing how much things are improving, my family, neighbours, friends and me agree that fighting for the funding was the right thing to do! Chances of a flare up (s) are high but there is no telling when that could be.

I still live life with constant pain, sometimes excruciating - which they say will never go, but the therapy has helped me to learn ways of working through it.

This is why I am raising money for the hospital I had treatment at as I would like to give something back to them for all the help and support they have given me through out treatment. Without their help I wouldn't be on my way to remission now and being able to start doing things I love with my friends and family.

I am doing a 7 mile walk (all flat footed) around 4 of London's main parks - St James's park, Green park, Hyde park and South Kensington gardens on the 4th of september. This will be a challenge as I havent walked propperly in a long time and have started to build up how far I can walk flat footed since treatment.

The pain management services at RNHRD can then decide what they spend it on -

Funding items ranging from state of the art diagnostic and rehabilitation equipment to new washable toys in the children's outpatient areas

Supporting research and development to ensure the delivery of innovative evidence based treatments and techniques

Redeveloping and enhancing the physical environment .

 

Im not back writing or drawing yet, running, trampolining, I still have some goals to meet but I will get there eventually.

CRPS is rare, there for many go undiagnosed or are not diagnosed for years. CRPS is becoming more common. But there is hope! 

Help spread awareness on this horrible disease!

 

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