Friday, February 6, 2015


Do you have one of those memories etched in my memory that you will never forget?  Birth of a child?  Loss of a loved one?  Marrying your true love?  I have one memory that is forever burned in my mind.  Two years ago I fell on ice.  Yes, it’s not a monumental memory but because of my fall I, after much suffering, was diagnosed with Chronic Regional Pain Syndrome or CRPS.  Often doctors call it CR(a)PS because that is what it is.  Below is one person’s account of CRPS.  She is a lovely person I’ve met through CRPS groups who tries to do good by helping others.  I hope you enjoy her perspective.

What is heck CRPS/RSD?

It is a chronic neurological syndrome that is characterized by a severe burning pain that is often described by patients as if someone poured lighter fluid on them and then lit it. They feel like they are on fire. Think about the worst sunburn that you have ever had and multiply that times one thousand. There are pathological changes in the bone and the skin, such as bone loss, and shiny, hairless reddish purple skin. Many RSD patients have excessive sweating all of the time. The tissues of the effective area(s) swell. Most have an extreme sensitivity to touch (Allodynia).  A light breeze can cause excruciating pain. Clothing on the affecting area(s) can be painful. This last symptom can also cause people with RSD to pull away from the ones that they love. Touch is a sign of friendship and love. Many people can’t understand why you are constantly pushing them away and asking them not to touch you no matter how many times you explain why!  Why, because to someone with RSD touch is extremely painful.

Anyone can get RSD. It is more prevalent in women than men and the number of pediatric cases is on the rise.  One of the biggest challenges that the RSD patient face, is the lack of proper understanding and education of pain in the medical community, the inability to get insurance companies to recognize and pay for a multidisciplinary treatment team and finally the loss of employment, social structure and family life that are all struggles the patient with CRPS may be faced with. One of our biggest battles is that of getting treatments covered by health insurance and Workman Compensation companies.
RSD is a malfunction of part of the nervous system that usually develops in response to a traumatic even such as an accident or medical procedure. A minor injury such as a sprain or a fall can also cause nerves to misfire sending constant pain signals to the brain.
Help us provide the financial assistance people with CRPS need to manage their pain.
Thank you!

Written by CRPSPIP @

Renée M.

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