My story of how I got CRPS

I am currently 19 years of age and this is my story of I got CRPS.

 I was born with a club foot on my right leg. Doctor’s tried several operations to try and correct this but until I was 6 years old none of those operations where successful, but I did not let it stop me. It may have taken me longer to learn to do things like hand-stands and was slower at running but that did not bother me and I would not give up trying to do those. Then when I was 6 years old, I had an Ilizarov Frame put on my leg to try and turn my foot straight. An Ilizarov Frame consists of two or three metal rings that encircle the leg to be corrected, pins are then attached to the rings and go through the bone. The pins had to be tightened three times a day in order for it to be successful. I had this on for 4 months and then was put into plaster casts while the bone set in the new position my foot had been turned to.

When the plaster casts were removed and it was incredible, my foot looked straight and it was like magic. It made such a difference I could walk better and wear shoes from the shoe shops where as before I had to have them made because of how my foot was. My foot is currently 6 sizes smaller than my other foot but it is manageable, I have an insole with a blocker on the end so that I can get the same size shoes.

When I was 11 years old everything seemed to be going well I was getting ready to move to secondary school and was excited about it, and was like any other 11 year old was.  A month before I was going to be 12, I started getting a rash on my right lower leg, I went to my GP and it looked to be like eczema, so I was given creams to put on my leg to help the rash go. When my mum tried putting on the creams it just made it worse, my leg would go bright red and it became very painful.  Then as days went by it just kept getting worse and sometimes my leg would bleed where the eczema was just for no reason. I was referred to see a dermatologist, who agreed that I had eczema but thought there was something else underlying my skin.  Once the eczema had been treated, I had tests done to figure out what else was wrong with my leg because it was really sensitive to touch and felt like it was burning all the time, but all the tests showed nothing. Six months after it started I was diagnosed with Reflex Sympathetic Dystrophy (RSD) now known as Complex Regional Pain Syndrome.  

I had never heard of this disease before and was trying to take everything in. When we got home from the hospital my mum went on the internet to find out more information on it. When we looked at the lists of symptoms for it we couldn’t believe it because I had a lot of them, and then we knew straight away this was the disease I had.

The symptoms I have are:

·         Burning sensation (like putting part of your body into scalding hot water and never taking it out.

·         Hyper sensitivity (even the slightest touch causes intense pain)

·         Cold weather causes the pain to increase.

·         Swelling to the affected area

·         Skin colour change.

·       Complication of open sores.

I was referred to see a pain team to try and help get control over the pain. I was put on a small mixture of medication, because it is thought that certain tablets together provide better relief. I was able to get some relief and the pain was at a bearable level and what I used to call my ‘normal’ pain level, because it would stay at a constant level unless touched. Not long after I was diagnosed I had a nerve block to try and help the pain, I was told it could make the pain better, worse, better for a short time or have no effect. The first two days after I had the nerve block the pain felt worse but was told this could happen, but the pain stayed worse than it was before I had the nerve block.

I found it was getting harder to walk because it was causing more pain, and when I started secondary school I found it too painful to walk round school all day. I was provided with a wheelchair to try and help me get around a school which did help.