We all know pain is difficult to deal with when we’re the one in pain.  It’s also tremendously hard to see someone we love in pain, especially a child.

Tony is the moderator of RSD/CRPS World News Group.  His granddaughter was 8 years old when she was diagnosed with the pain disorder RSD (Reflex Sympathetic Dystrophy), and the whole family came together to help.  Tony says that even with their “firm family base,” it’s been a “long and rocky ride battling the condition.”  I asked him to describe his granddaughter’s story, as well as how it’s affected everyone involved.

Tony emphasizes that “no matter how hard her parents and I battled to help her, it was ONLY her strong willpower and determination to beat it, that she came out the other side.”

Winning With a Will: A Young Girl Fights Against Her Treatment, Then Turns On the RSD Itself and Wins

When my granddaughter developed RSD in 2000, 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 without any obvious outward signs.  It took many weeks of confusion, anger and sometimes arguments before we discovered through the internet that she had all the symptoms of a little known condition called RSD/CRPS.

We were fortunate then to be referred to a teaching hospital where our initial diagnosis was confirmed, and my granddaughter then spent two periods in the hospital.  They told us that, in their experience, the only way to get rid of the RSD is to keep the limb moving by hydrotherapy and physiotherapy.  They used these treatments, but by the end of her stay 3 weeks later, she was worse – on crutches and in terrible pain.

She continued with the treatments over the next few weeks, but we soon realized that the exercises were building a block in her mind against all forms of exercise.  At this point, our family stopped the prescribed exercises, and just encouraged her to do whatever she wanted, just as long as she was moving some part of her legs.  The hospital approved this strategy.

Slow Improvement in Pain and Functioning
By now my granddaughter was using a wheelchair, and could not walk without crutches – even then only putting her good leg on the ground.  But after a holiday in Tunisia with its 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 next 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), and playing with friends.

She was on pain medications throughout this time, and she took Imipramine (a tricyclic antidepressant) to ensure that she got good sleep on at least some nights.

I’ve lost count of the number of times her Mum phoned me to angrily tell me that I had made my granddaughter do too much cycling, for which she was then feeling the consequence.

Progress was slow, but over time she first discarded the wheelchair, 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.

After another year though, she had reached the point of using her leg almost normally.  She didn’t limp most days, though she was still experiencing pain.

At one point, she told her Mum that she didn’t feel well and that the pain in her leg was getting bad.  We then realized she had gotten a bug that was going round the country, but after a short while, the sickness went away and the RSD pain subsided to a much lower intensity.  In her own words, “I can live with this amount of pain.”

Follow Up
She spent many happy months pain-free, doing the normal things that little girls her age do.  However, in September 2002, she was in a collision with one of her sisters and was knocked over.  She sustained a dislocated knee in her GOOD leg, and as a result, within 24 hrs her RSD had returned to BOTH her legs.  She once more became wheelchair-bound and in constant pain.

This time she was taken, on a daily basis, to do aquatherapy by her Mum and sometimes me.  Again, she was in pain from the outset, but with time and perseverance and LOVE, she got herself back to living a whole life once more.
Currently, she’s 14 yrs old and is back doing the things that all healthy teens do.  She has pain in her legs some days, but again she’ll tell you she can cope with it.  We ALL keep our fingers crossed that her recovery will be sustainable.

This story points to these coping skills:

• Search for your own information, as well as finding experts in your condition
• Enlist family support
• Listen to your body
• Keep moving (see this funny video on CRPS/RSD A Better Life)

One caution I would add as you read this story… sometimes people do everything “right,” but still have pain, or get worse.  Don’t blame yourself for your pain!  Don’t feel guilty if you get worse!  We all do what we can, but sometimes our diseases have minds of their own.  Support yourself… you’re doing the best you can right now!  — HtCwP