“Complex Regional Pain Syndrome is a very rare but extremely painful condition,” says Darria Long Gillespie, M.D., an ER doctor and senior vice president of clinical strategy at Sharecare. “It can be triggered after a variety of conditions, ranging from trauma and even surgery or other conditions such as heart attack or stroke. Symptoms can be slightly different for CRPS in adults vs. children, but in general can range from pain, tingling or burning, to sensitivity to touch, and even muscle atrophy.”
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In Hannah’s case, she experienced excruciating pain whenever something touched her leg—even if it was as light as a feather. “In CRPS, the problem isn’t so much in the area that ‘hurts,’ such as the toe, in the case of this young woman, but in the nerves that carry the signal back from the toe, all the way to the brain,” says Gillespie. Eventually, the CRPS also caused Hannah’s foot to turn black and she developed a flesh-eating ulcer.
After three years and a whole pharmacy’s worth of medications to try to manage the pain, Hannah finally decided to have her leg electively amputated, despite the advice of her doctors who warned that the CRPS could still persist in the remaining part of her leg. Over the summer, she posted about the experience on Facebook:
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“[The pain] stopped me from doing so many things,” Hannah told the Daily Mail. “Having my leg amputated was the best decision of my life.”