My Story: Something Called RSD

My Story: Something Called RSD

It started with a handstand.  I was a very active dancer and stage actress, and was teaching my daughter how to do a front handspring when my right wrist snapped.

It wasn’t severe at first.  I barely noticed anything was wrong until dinner time. My daughter’s hand brushed against mine while reaching for a muffin, and I yelped!

Rebecca Wickens

Rebecca May

I was positive my wrist was broken, so I rushed to the emergency room, only to be told that it was probably just a bad bruise. I was given some painkillers and told to “call within the next couple of weeks if it became worse.”

The weeks and months tumbled into a year.  I was performing on stage as a peacock, the most vain bird in the bunch.  As I spread my plumage, it seemed to cause severe pain and trauma.

I went to see my doctor, and she told me I had something called RSD (Reflex Sympathetic Dystrophy).  I hadn’t heard of this chronic pain syndrome before. It seemed like a mask to excuse all that I had been going through. Every day my arm was feeling like it was on fire in the stuffy cast the nurse put on me.  It wasn’t her fault. She didn’t know.

Time passed. I went to neurologists, begging for an explanation.  Was it MS?  That I could handle.  I would have an answer, an explanation for a body that was not cooperating.  I began a long pattern of self-diagnosing, which is fairly common for those of us suffering with chronic pain. If doctors couldn’t find a solution, could I?

When I was at my wit’s end, it came down to being my own advocate, being vocal and complaining. Seven years after my injury, I finally found myself on the operating room table at a teaching hospital where I gave the performance of a lifetime.

After I had enough pain for one day, my husband and I drove to our local ER. I felt like I didn’t have a bone. It felt like someone took a hammer to my wrist years ago, and I had been suffering since then.

I did everything but throw my sweaty hand to my brow, arch my back and whine in a British accent. I carried a sad, diligent medical portfolio of every doctor visit, diagnosis, and prescription given to me to treat my symptoms.

To my surprise, a doctor came back into the examining room white as a ghost.  My wrist bones had indeed deteriorated. The x-ray he reluctantly authorized for me revealed that I had something called Kienbock’s disease — more commonly known as avascular necrosis of the lunate bone.

My bones looked more like a few pieces of Rice Crispies cereal after years of steady deterioration.  Doctors aren’t trained to look for it, because it’s in the rarest category. So rare, in fact, the hospital I was referred to paid for my entire operation. That included a partial wrist fusion — with a bone graft, some donor bone, and a few screws to rig it all together. Some nerves were also removed around my elbow, after pre-op nerve conductivity tests revealed  they were complicit in causing the extreme pain in my wrist.

The procedures were performed with the utmost care by the assistant chief hand surgeon at the University of Washington Bone Clinic.  I felt like a disabled superstar. After seven years, I was finally getting the care I had been longing for.

I was hoping that once the surgery was completed, I could recover and go back to my old life. I wanted to be good as new. That didn’t happen. It turned out that I did indeed have RSD caused by the wrist injury.  The root cause was addressed by the surgery, but the RSD remains.

It started in my wrist then, and as of this year, the pain has spread down to both feet and ankles.  I barely get up most mornings without substantial amounts of morphine. I have a pain management plan.  Once the medicine sets in, usually after two hours, I pray that it is a good day and that I am not stuck in bed with an illness.  Because I also have some autoimmune deficiencies, I’m prone to suffering through prolonged illnesses. I have rheumatoid arthritis (RA), hypothyroidism, and irritable bowel syndrome.  I try to avoid crowds as the most innocent cough can keep me in bed or on antibiotics for weeks.

I’m a homeschooling mom, a chauffeur, a cook, a maid, a nurse, and a wife… and do it all with a cane on bad days.  I avoid complaining about pain.  After my surgery, people thought that I was going back to normal.  Those afflicted with chronic pain often receive little sympathy from others –with the exception of those who are experiencing the same pain.  We’re often called liars and when physicians can’t figure out what’s wrong, they slap a convenient diagnosis on us and call it good.

I would be lying if I said I wasn’t bitter.  I’m angry that someone didn’t notice the root cause of my symptoms after all these years.  I’m angry that it took me humiliating myself with a portfolio under my arms and an angry husband escorting me into the ER.  I even moved to Tucson for two months in complete desperation trying to alleviate my symptoms.  When I do express myself via social media or a phone call, no one really knows what to say.

So, I will say to you that I’m sorry.  I’m sorry you are hurting and that you aren’t being heard, because you deserve to be.  I’m sorry if you’re suffering without pain meds because no one believes you.  I’m sorry you feel robbed of your physical body and youth.

I’ll be 40 next week.  I used to have big plans.  I wanted to go to Hawaii with my friend, and sip umbrella drinks while soaking up the sun.  Now, I wish to feel well enough to celebrate my birthday with my children, quietly at home.

12_7.jpgRebecca May lives in Poulsbo, Washington with her family.

National Pain Report invites other readers to share their stories with us.

Send them to editor@nationalpainreport.com

The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that!  It is for informational purposes only and represent the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.

 

Authored by: Rebecca May

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Rebecca

Thank you so much for your kind words. It is true, the bitterness doesn’t do any good. But, it feels good to release those feelings. I try to do it with people who understand. Sometimes through a song, poem or an article. I usually fake it till I make it, smiling so that my kiddos will have precious memories through the pain. They know I suffer, but I don’t want them to think that is all I am about.

susan

Go to Hawaii with your friends. You will be able to after reading the stories of RSD on the http://www.tmswiki.com.

Trudy McGee

If it helps any, I’m sorry for you too. Sorry that your children were robbed of the mom that you used to be, because no one would listen. Sorry that your dancing career came to an abrupt end. Sorry that you hold bitterness. I believe that is something that we have to work through and let go. It’s not that easy. Living in chronic pain, is like a death. It is a death of a life that you thought you were going to have, but now have to change course to something that you don’t want. You go through the same steps as any other death, anger, depression, bargaining, depression, and acceptance, though do we really ever accept?? Also, you can bounce back and forth between these stages over and over again, which stinks too. What I am trying to say is that you have every right to be angry, but wasting all that energy isn’t doing your pain, or your children any good. I know, I lived it myself. Best wishes to you.