The darkness has returned. That's what I call our 16-year-old son Matthew's chronic searing pain. His condition is known as complex regional pain syndrome or CRPS. Most patients call it craps, because that's the perfect word to describe it. In simple terms, it is an endless pain loop caused by the misfiring of nerve endings which send constant pain impulses to the brain.
Most patients experience the sensation in one or more limbs. In Matthew's case, he likens the experience to dipping his left foot in acid and having the skin burned off, layer by layer. Matthew has endured this agony for the past five years.
He has had periods where he has been pain free, but they are brief respites on a nightmarish journey that has consumed a third of his life. As a result, his bedroom, which should be a teenager's safe haven, has become his prison. He rarely ventures out, not even for meals, and this otherwise social, creative and engaging young man is isolated and often sullen. The pain is different for those of us in his family, but it is no less real. Listening to Matthew scream intermittently for hours on end takes a psychological toll on all of us.
Matthew's mom and I have gone to so many doctors that we have lost count. He has been examined by neurologists, anesthesiologists, psycho-pharmacologists, bio-feedback specialists, hypnotherapists, psychologists, physical therapists and more. Needless to say, Matthew is sick of doctors. There is no lack of caring nor of excellent treatment, but so far, nothing seems to have worked. While we are not turning our backs on traditional medicine, we have decided that it is time to also think outside the box. We are now looking to alternatives like chiropractors, healers and even Reiki, a Japanese technique of stress reduction through the laying on of hands.
I understand how people can become so desperate for relief that they will try just about anything. After all, when traditional avenues are all but exhausted, what choice does a patient really have? All our son wants is relief from his debilitating pain so he can enjoy the normal life of a teenager. Every day his mom and I pray that something will finally work so we can, at long last, lift the darkness and bring him back into the light.
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