Winning with a will

When Jenna, my Granddaughter, developed RSD almost two years ago her mother and I started searching for information. Nobody seemed to understand her condition or to believe that she could be in so much pain. It took many weeks of confusion, anger and sometimes arguments before we discovered through the Internet that Jenna had all the symptoms of this little known condition called RSD/CRPS.

We were fortunate then to be referred to a teaching Hospital in London (UK) where our initial diagnosis was confirmed and Jenna then spent two periods in the hospital. They told us in their experience that the only way to get rid of the RSD is to keep the limb moving by hydrotherapy and physiotherapy, and this they started these treatments in the Hospital and continued for the total of three weeks that she was there. By the end of her stay Jenna was worse instead of better and came out of the Hospital on crutches and in terrible pain.

We continued with the Hydro. and Physio. over the next few weeks, only to realise that these treatments were building a block in Jenna's mind against all forms of exercise. At this point, Jenna's mum told me that she was going to stop the organised Physio and would just encourage her to do whatever she wanted, just as long as she was moving some part of her legs. The Hospital approved of this strategy when they realised that Jenna was rebelling against organised Physio.

By now Jenna was using a wheelchair. She could not walk without crutches and even then only put the good leg to the ground. At this point she took a holiday in Tunisia with her family. After two week in a warm climate, where she was encouraged to use her leg and to swim, she was starting to put a little weight onto her bad leg. Over the coming months, she was encouraged to join in what her sisters were doing - dancing, sitting on a bouncy ball, playing table tennis, cycling (one legged at the start) using her scooter (which made her use her "bad" leg) playing with friends - anything that got some exercise to her leg. She was on pain medications throughout this time and she took Imipramine (a tricyclic antidepressant drug) to ensure that she got a good sleep on at least some nights.

Progress was slow, but over time and through her own actions she first of all discarded the wheelchair (except for long trips) then got rid of one crutch and finally declared that she didn't want to use any walking aids at all. She used to limp round the house and hop up and down stairs and we noticed that she never put her full weight onto her bad leg. Now, after another year, Jenna has reached the point of using her leg almost normally. She has got rid of her limp most days, though she is still experiencing pain. Bit it has been the combination of her determination and the daily pain medications (just Diclofenac 3x25mg per day) that has kept her going.

Recently, Jenna told her Mum that she didn't feel well and that the pain in her leg was getting bad. We soon realised that she had got a sickness bug that was going round the country, but that her drugs were masking the symptoms. We therefore were only slightly worried when she got the pain returned to her leg in full force. After a short while, the sickness went away and the RSD pain subsided to a much lower intensity. In Jenna's words "I can live with this amount of pain". As a result, and on Jenna's insistence, her pain medications were discontinued with no ill effects. However, there was another encouraging development…