A Mother's heartbreak

For RSD Awareness month I asked a woman from my support group if I could write about her and her daughter's story. This woman has a 20 year old daughter with RSD. I asked her a bunch of questions but during the process she had to stop. It is one thing to live each day fighting this battle but the memories brought up a heartache she thought she had a better control over. Reliving the past few years made her physically ill. With respect and understanding we agreed to not continue with the questions.

Before RSD her daughter was a happy sixteen year old who loved figure skating and ice dancing. She worked hard and would be at the rink by 5am. She also taught beginner skaters twice a week. She was home schooled and part of an Ice Theater group. She was a healthy and energetic teenager.

They are not sure at what point she developed RSD. Her mother knew she needed her gall bladder removed. Before she was able to convince the doctors about the gall bladder her daughter seemingly injured her tailbone while skating. By the time they saw their third gi/colon rectal doctor the pain would not go away. The pain management doctor then decided to remove the tailbone and two weeks later her gall bladder was removed in an emergency surgery. Her tailbone would not heal. She went in for 5 more surgeries and was in the hospital/rehab facilities for another 5 months. When she finally came home from rehab she was walking unaided and was going to continue with outpatient therapy. Unfortunately when her mother checked her wound it had come open again. She had to take her daughter back to the surgeon for another surgery with a 6 week recovery. During this time her daughter became weaker and weaker. At this time they tried nerve blocks without success.

This is when the mother had to stop telling her story. Remembering everything her daughter went through, what she went through as a mother was more than she could bear. I get it. It took me years before I was able to tell people about what it was like for me living with RSD. Living with physical pain also brings emotional pain. You might not be facing a life or death situation but you are dealing with the loss of a life you did have and dreamed of having. I know the physical pain of RSD but as a mother I can only imagine the emotional pain of seeing your child's dreams slip away. This mother once watched her daughter with awe while she was ice skating and now it is a painful memory.

For RSD Awareness Month I ask that everyone remember that the caregivers also live with the pain of RSD. For the sake of the people who live with RSD and the people who love them, please help us bring more awareness. Help us increase our chances of a pain free life!   

Happy First Day of RSD/CRPS Awareness Month!

I have gone back and forth about what I should write about today.  I written about my personal experience too often so what other way is a good kick off for the month?

Definitions!

Last year I was surprised when someone asked me what is the difference between acute pain and chronic pain?  I was even more surprised when they told me they thought it meant "acute refers to a small pain and chronic refers to more severe pain."  No.  These terms reference the longevity of the pain.  Acute pain is temporary pain like from a broken arm, twisted ankle, and some headaches.  Acute pain goes away when the problem area is healed.  Chronic pain is a pain that is intractable and lasts longer than 6 months.  These terms have nothing to do with the severity of pain.

Why do I reference the disorder as RSD/CRPS?  Well, 18 years ago when I was diagnosed the disease was still mostly refered to as RSD but the new name CRPS was slowing growing too.  It all depended on the doctors diagnosing you and which term they prefered.  Most people who have been diagnosed in the past five years are given the term CRPS.  I combine the two names because they are the same thing.  The name change happens because the medical community is still learning so much about this disorder.  Several years ago I did read an article that stated there could be a new name change coming but as a community we stood up and said please no!  It is hard enough to get the support and awareness we need when a name is not known but to keep changing it makes it darn near impossible.  After all RSD is not it's first given name.  Our disorder was discovered back in the Civil War and was named Causalgia.

So what do these initials stand for?  RSD is Reflex Sympathetic Dystrophy and CRPS is Complex Regional Pain Syndrome.  Now, what the heck to they mean?  RSD/CRPS is a disorder of the nervous system.

How does it work?  Usually the disorder begins after a trauma to your body.  This trauma can be anything from a simple sprained knee, a broken bone or surgery.  Occasionally you might not have noticed any transpiring event.  What then happens is that your original trauma heals like it is supposed to but you Sympathetic Nervous System is not misfiring signals to your brain and instead of your condition improving the pain is increasing.  Example; x-rays, cat scans, mri scans, blood work will all come back showing that your affected body part is negative to any problems.  The reason is that the disorder does not live within the affected body part, it is the nervous system that has gone haywire.  This is why so many patients with RSD/CRPS have at least one doctor look them in the eye and tell them "There is nothing wrong with you."  Unfortunately it can take months before a doctor who is familiar with RSD/CRPS recognizes the disorder and gets you started in a treatment program.  These months cost the patient a chance at remission.

In the years since I was diagnosed the medical community has made a lot of progress.  Back then you needed to drive to a major city to find a doctor who treated RSD/CRPS.  Today there are Pain Management Doctors everywhere.  More and more doctors know about RSD/CRPS and I have heard the stories of lucky people who were treated early and about a year later had full remission.  I have hope.  With more awareness we increase our chances.  That is why this month is so important!