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complex regional pain syndrome CRPS/RSD: sheila’s story as told by her husband

Dave and I had been roommates in Salt Lake when I met Cody back in 2000. He was always quiet and funny, waxing poetic about moldy coffee or snow leopards. Cody and I were both surprised when he and my other roommate began running half and full marathons, regularly. Soon a cute girl kept showing up in Dave’s photos and Cody and I jokingly wondered how regular old Dave had landed such a babe. They married, continued to run races and you could always tell how in love Dave and Sheila were in their photos.

Earlier this month Dave changed his profile picture, it was a good one. The two of them sitting in the back of a truck, Sheila looking up at Dave with all the love in the world. I noticed a comment left by a friend that said “I’m so glad she had you to share her life with.” I started reading other comments, then posts from other people, all condolences and love. Then came the obituary.

His wife had passed.

I offered my condolences, and feeling helpless asked if he’d ever be willing to share her story, to share awareness of the misunderstood and rare disease that Sheila was diagnosed with earlier in the year. He was reluctant at first “I’m not a writer.” But when it comes to sharing something you care so deeply about, it doesn’t matter if you’re a writer or not. Dave loved Sheila, Sheila loved Dave.

Dave tells the story better than I ever could have, my only ability is to share it, ask you to share it, and hopefully help even one person with Sheila’s story.

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I had never heard of Complex Regional Pain Syndrome (also known as Reflex Sympathetic Dystrophy or Causalgia) before my wife Sheila was diagnosed with it earlier this year. In April of 2013 her big toe went numb for no apparent reason. The numbness, accompanied by weakness, quickly spread up her leg until her entire right leg below the knee was rendered useless. Within about 10 days the pain set in. She was diagnosed with CRPS in May and she passed away on July 29th, 116 days after her toe first went numb.

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The benefits of acute stress for people in pain

Image of hippocampus

by Neil Pearson, Life Is Now

The stigma of chronic pain can lead us to persevere and try to push through the pain, only stopping when we cannot carry on. Then the pain flares up and we pay the price!

If you have read my blogs or listened to the pain education I provide, you will have heard me suggest that this technique may be good for ‘getting the job done’, and it may be helpful in acute pain, but it is actually counter-productive to regaining greater ease of movement in the face of persistent pain. The theory we have for this includes two key ideas. First, if your protection systems are producing pain in order to get you to stop, but you do not even yield, the system will start to function as if the alarms are not loud enough. Second, your nervous system will learn to get better at whatever it practices. The more it practices creating intense pain, the better it gets at producing intense pain.

This idea may have merit, but for many people it is in direct conflict with the idea that our body will grow stronger if we continue to stress it. Actually, this is much more than an idea. It is normal reality. If you want to make a muscle stronger, use it more. If you want to grow more tolerant of an irritating or bothersome sensation or experience, step up to it. Face it. In time, it will bother you less. Try playing a string instrument for the first time, and feel the intense pain from pushing down strings with your fingertips. Keep doing it and your body will adapt, even creating a callous as a protective response, just like woodworkers and carpenters have on their hands and dancers have on their feet. In other words, when you stress your body, typically it responds by being better able to tolerate that stress next time.

So why does this positive adaptation not occur in many people with persistent pain conditions? New research provides some clues. It also provides support for what we can do to create positive adaptations in our sensitized nervous systems.

Scientists know that there is one part of the brain that is highly important for learning – the hippocampus. They also know that the persistent high levels of stress hormones from chronic stress inhibits activity in the hippocampus. Recently, studies have shown that this area of the brain is one of the few to be able to produce new brain cells. These same chronic stress hormones inhibit new cell formation, and this likely has a detrimental effect on learning new things. So chronic stress is bad, but what about acute stress?

At the University of California, Kirby and colleagues* studied the effects of acute stress on the formation of new cells in the hippocampus, and on learning. They used rats, knowing that there are enough similarities in brain functions to make some generalizations from the studies to humans. The rats were stressed over a short period with inactivity. (Yup, this is a stressor.) This temporary stress doubled their stress hormones, and the researchers measured up to twice as many new brain cells in the hippocampus. New brain cells should lead to improved brain function, and that’s exactly what they found. They were able to put markers on these new cells and show that once the cells matured two weeks later, these same cells were used by the rats in a learning task to out-perform other rats that had not undergone the acute stress.

What does this all mean?

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