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Lucinda’s story – why therapies matter

“My name is Lucinda and I am 35 years old. I developed Complex Regional Pain Syndrome (CRPS) about eight years ago in the lower part of my right leg. The CRPS has since spread to affect all of my right leg, lower back and I am showing signs of CRPS in my right arm.

“Before I developed CRPS I was a keen horse rider, I was lucky enough to own several horses with my sister. Anything to do with horses I was there, show jumping, dressage, cross country, you name I did it! Sadly my world came crashing down one sunny spring day.  This is my CRPS journey:

“I had an operation on my stomach, just simple keyhole surgery, the procedure went well and after a couple of weeks was back at work. I went for my usual walk at lunch time but when I came back my right leg was really hurting. By the time I had got home that night my leg from my knee down had swollen nearly doubling in size and was hot and painful to touch. The next day I went to my GP because I was concerned what was wrong with my leg.

“Immediately i was admitted to hospital for a suspected blood clot. To cut a long story short the doctors could not find out what was wrong with my leg, which by this point was extremely painful and sore to touch. But, the doctors could not find anything wrong with me, so I paid to have an appointment with a private consultant. He examined me and said I have CRPS. This was about nine months after the initial symptoms started. My CRPS has spread over the years, it now effects my lower back, the whole of my right leg and my right arm. This is due to operations and having falls, but I won’t bore you with the details.

“I was referred to the CRPS Team at the Royal National Hospital for Rheumatic Diseases (RNHRD) in Bath. I didn’t know what to expect as I had lost faith in all the consultants I had seen.  All I wanted was the pain to be taken away and be able to walk properly again.  The team were incredible they explained my condition in detail answered all my questions the support was overwhelming.  It was decided I would stay as an inpatient for two weeks.

“A couple of months later I arrived at the hospital scared and anxious. The nurses were lovely they reassured me and understood that I couldn’t cope with people being too close to my affect leg.  I met other patients with CRPS, we would sit together at meal times and chat about our experiences with CRPS.  For the first time since having CRPS I felt I was not alone, there were other people going through the same as me. I made some wonderful friends who I still keep in contact with now.

“The CRPS team complies of an Occupational Therapist (OT), Physiotherapist, Psychologist and various Specialists.  Each person has played a huge part in my journey of living with CRPS, in particular OT Charlie and Physio Keri.  During my stay at the RNHRD the team taught me how to live with my condition.  The word PACE was drummed into my head.

“Having CRPS made me very anxious to go out and I was scared I would get knocked by people and starred at because of my disability.  Charlie helped me over come my fear giving me useful tips to protect myself.  She told me to walk with the buildings on my painful side, ask Paul to walk that side of me so people would have to pass him not me.  I have even trained my Jack Russell, Hercules to walk on my right hand side so if I am on my own I have some protection there.  I have become so confident in new places that earlier this year I stayed at the hospital I took myself to the gin bar over the road all on my own.  For me this was a huge achievement and a very rewarding one!

“Keri my physiotherapist understood that no matter what I really wanted to try and lead a normal life, as normal as life can be with CRPS.  She taught me to aim for smaller goals rather than huge goals that left me feeling useless because I couldn’t achieve them.  With Keri’s help I now use a hydrotherapy pool every day, which is something that I find a vital part of my rehabilitation.  Keri has taught me various techniques to help me cope with living with CRPS.  I have learnt to pace myself and ask for help. One of the symptoms of CRPS is your brain distorts the way your effected limb looks.  This is a huge battle for me as I still cannot look at my effect leg.  Trying to describe my leg to Keri even now brings me to tears.  I thought I was going crazy when I tried to explain to people how it looked.  Keri assured me this was all part of having CRPS.  When I chatted to other people with CRPS they would say the same.  The team are always there to help me through the lows of having CRPS, I can honestly say I would not have been the person I am today without the team.

“I mentioned earlier that I have a serious love of horses, they are my life.  Riding was no longer an option for me as it was too painful.  I became very depressed and could not face even going to see the horses.  This went on for a couple of months I became more and more depressed and started to think awful thoughts.  My mum said to me why don’t you try and ride side saddle.  I asked the CRPS team what they thought and they said give it a go.  Where I live I am very lucky to have an equestrian centre that specialises in side saddle riding.  I explained about my condition, how I have extreme pain, I can’t work out where my leg is half the time and that I suffer from bad spasms.

“My instructor understood and put me on a safe horse.  Although riding the horse sideways was painful it was not as bad as riding astride (I had a couple of goes in the past but found it impossible).  I felt incredible when I got off the horse I was not so good physically but mentally I felt fantastic.  I had a couple more lessons over the next few weeks’ it gave me something to focus on instead of the pain all the time.  My instructor decided to try my own horse Splash side saddle and low and behold she took to it like a duck to water.  This was four years ago, now Splash and I compete in side saddle classes up and down the country.  We do pretty well.  I came fourth out of 25 places in our first international show and have had many wins in dressage and side saddle classes.  I have been graded by a special physio so that I can compete in para-dressage. I have been given a grade 4 which is the least disabled grade (grades range from 1 being the most disabled to 4 the least disabled). I am currently in the process of being re-graded.

“Medication wise, it was decided that I should have a Spinal Cord Stimulator (SCS) fitted as a last resort to help with my pain levels.  This works in a similar way as a Tens Machine but it is inside your body.  The SCS has helped my pain levels in my right leg.  I still have a lot of pain but by having the SCS I can manage my pain levels better.  I still have all the other symptoms of CRPS (limb distortion, spasms etc.) but with lower pain levels it means I can concentrate more on getting my brain to engage with my right leg.

“Without the help and support of the team at the RNHRD, I would never have achieved any of the above.  I am a strong determined woman, but even strong determined women have low moments and I really have hit those lows.  I feel have got my life back rather than CRPS controlling my life.”

Inspired by Lucinda’s story? If you’d like make a donation towards the new RNHRD and Therapies Centre, visited our website or donate through JustGiving.com

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