November is CRPS (Chronic Regional Pain Syndrome) awareness month. I realized that I have not really shared our story with CRPS so I thought I would take this opportunity. Many of you are aware that my son, Dylan was diagnosed with a host of issues. (POTS, Gastroparesis, EDS) One thing that we could never explain was his pain. He had extreme pain in his stomach. Every time we saw a doctor, I would talk to them about his pain. Some of them thought he was crazy, some thought I was crazy. Some thought it was real, but not as bad as he said it was. No medicines would touch his pain and none of the doctors wanted to give a child anything stronger. It was a horrible place to be.
In April, we went to the Spero Clinic in Arkansas. When we arrived, at first intake, they took his pain very seriously. We went there to treat his other issues, but when they told me he had all the symptoms of CRPS, I couldn't believe it. It was atypical because it was in his stomach, but it fit what they had seen. (and they see a ton of crps patients). Even though Dylan had a lot of issues, he asked them to help him with only two things, passing out and pain. He didn't even care if they got rid of the pain, he just wanted them to bring it down.
As they began to do their treatments the pain decreased! Over time we have seen remission of his symptoms. They say a miracle is a miracle because one cannot explain it. We have experienced a miracle! We still need to watch things and maintain good health, but we are both so very thankful.
Part of me hates the fact that his previous doctors didn’t diagnose him with CRPS, yet the other side of me is grateful. I would have discovered he was in pain that is greater than childbirth. I would have discovered that most people treat it with spinal surgery that often fails. I would have discovered that there is a bleak outlook.
Instead, we have the joy of having our son back. He no longer cries himself to sleep because of pain. He no longer wakes up screaming in pain. He no longer asks me if he is going to die. He lives fully. We are so thankful. Remission is possible.
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