I Have Complex Regional Pain Syndrome, Type I
My Sons Is Pain Free Today After 2 And A Half Years With Rsd/crps.
By:
Written on February 16th, 2013
My son was 10yrs 2 months when he damaged his ankle hopping. He landed on a rut in the long grass. He couldn't put any weight on his leg and was in considerable pain/discomfort.
Then started a long chapter of medical miss-management. No-one meant to hurt him, they just didn't have the time or the administrative structure to give his treatment enough thought. He had six castes in 7 weeks. He developed RSD/CRPS although we didn't know it at the time. Once the caste was removed it took 5 and a half months to regain almost proper function.Then he sprained his ankle running down a steep hill! How I wish we hadn't done that!
Luckily for us we then saw an excellent registrar at our hospital, who diagnosed possible RSD and ordered immediate physiotherapy. Six weeks later and almost weight bearing we saw an inexperienced medic who manipulated his ankle, (I was never told why it was necessary or what they were looking for). That did it. Two months later the crps had moved to his right knee and mouth (following a lost tooth) and he was reduced to a wheelchair.
The wheelchair was actually the turning point because he had equal weight through both feet. He could also stand up to do things knowing that he could take the weight off his foot in a second by sitting down again. (Rather than lurching on his crutches to a nearby chair). He began to stand for a couple of seconds and then to take the odd short step while his mind was distracted making a hot chocolate or some such!
We went to see a top physio who gave him exercises to revive his foot, leg and back muscles. (His foot was atrophying). The exercises were excruciating but they worked. My son is immensely determined which made the big difference. We also had some cranial osteopathy which was immensely helpful. The first time he stood on his left foot for a couple of seconds was after an osteopathic treatment. They were very gentle and tried to reduce the pain. (His GP's were fantastic too, helpful, wise and protective).
We modified the exercises given by the physio, because although they helped improve the movement and function, they seemed to aggrievate the swelling. My son would choose a movement (like pressing the floor with his big toe) and focus on trying to get his toe to respond. The instant the pain shot up - he relaxed. Literally every fifteen minutes throughout the day we repeated this exercise. After a couple of weeks he could press his toe quite well. We then chose another set of movements. (We avoided the most painful movements and discovered that later on they were manageable).
My son watched a great deal of television, (he couldn't bear light), and I made him rest both feet on the ground all the time. Sitting on a pilates ball to watch telly helped a lot because he had to use his core muscles to keep his balance. I kept his foot warm at all times, changing a hot water bottle in the night. (Not too hot). Slowly the life in his foot and ankle came back. We added vitamin C to his diet. A very good diet is important, I think. Slowly we added other good sources of minerals, vitamins and fish oils.
Recently we have been doing very gentle neck and back exercises and VERY gently leg stretches. His back and neck were very stiff and sore but after a lot of clicks and pops and help from the osteopaths he has full mobility in his back. He now walks over a mile a day or rides his bike for a couple of miles. Hopefully soon we will start swimming regularly, which has been helpful before.
We gave up ALL painkillers and medical drugs very early on. After an initial bout of ice, which I will regret forever, (recommended by the medics), we only used warmth. I think this is very important. We have been very careful not to overdo things but not to give up. Yesterday two and a half years after the original injury, all the pain in his body has gone. It has been diminishing for sometime, flickering off and on, but now it has gone. I can hear him singing in the kitchen, and have my happy son back.
My son wants me to add that the thing that really got him through was a small, black puppy.
This is a long story but I know how much comments like this helped me in the early day. My sons crps may return but we know what to do now. Try to find little things you can enjoy even for a few minutes. Stay hopeful, that is your best strength.
Then started a long chapter of medical miss-management. No-one meant to hurt him, they just didn't have the time or the administrative structure to give his treatment enough thought. He had six castes in 7 weeks. He developed RSD/CRPS although we didn't know it at the time. Once the caste was removed it took 5 and a half months to regain almost proper function.Then he sprained his ankle running down a steep hill! How I wish we hadn't done that!
Luckily for us we then saw an excellent registrar at our hospital, who diagnosed possible RSD and ordered immediate physiotherapy. Six weeks later and almost weight bearing we saw an inexperienced medic who manipulated his ankle, (I was never told why it was necessary or what they were looking for). That did it. Two months later the crps had moved to his right knee and mouth (following a lost tooth) and he was reduced to a wheelchair.
The wheelchair was actually the turning point because he had equal weight through both feet. He could also stand up to do things knowing that he could take the weight off his foot in a second by sitting down again. (Rather than lurching on his crutches to a nearby chair). He began to stand for a couple of seconds and then to take the odd short step while his mind was distracted making a hot chocolate or some such!
We went to see a top physio who gave him exercises to revive his foot, leg and back muscles. (His foot was atrophying). The exercises were excruciating but they worked. My son is immensely determined which made the big difference. We also had some cranial osteopathy which was immensely helpful. The first time he stood on his left foot for a couple of seconds was after an osteopathic treatment. They were very gentle and tried to reduce the pain. (His GP's were fantastic too, helpful, wise and protective).
We modified the exercises given by the physio, because although they helped improve the movement and function, they seemed to aggrievate the swelling. My son would choose a movement (like pressing the floor with his big toe) and focus on trying to get his toe to respond. The instant the pain shot up - he relaxed. Literally every fifteen minutes throughout the day we repeated this exercise. After a couple of weeks he could press his toe quite well. We then chose another set of movements. (We avoided the most painful movements and discovered that later on they were manageable).
My son watched a great deal of television, (he couldn't bear light), and I made him rest both feet on the ground all the time. Sitting on a pilates ball to watch telly helped a lot because he had to use his core muscles to keep his balance. I kept his foot warm at all times, changing a hot water bottle in the night. (Not too hot). Slowly the life in his foot and ankle came back. We added vitamin C to his diet. A very good diet is important, I think. Slowly we added other good sources of minerals, vitamins and fish oils.
Recently we have been doing very gentle neck and back exercises and VERY gently leg stretches. His back and neck were very stiff and sore but after a lot of clicks and pops and help from the osteopaths he has full mobility in his back. He now walks over a mile a day or rides his bike for a couple of miles. Hopefully soon we will start swimming regularly, which has been helpful before.
We gave up ALL painkillers and medical drugs very early on. After an initial bout of ice, which I will regret forever, (recommended by the medics), we only used warmth. I think this is very important. We have been very careful not to overdo things but not to give up. Yesterday two and a half years after the original injury, all the pain in his body has gone. It has been diminishing for sometime, flickering off and on, but now it has gone. I can hear him singing in the kitchen, and have my happy son back.
My son wants me to add that the thing that really got him through was a small, black puppy.
This is a long story but I know how much comments like this helped me in the early day. My sons crps may return but we know what to do now. Try to find little things you can enjoy even for a few minutes. Stay hopeful, that is your best strength.
By:
An EP User
