My Story: How RSD Changed My Life

My Story: How RSD Changed My Life

I was hurt on September 24, 1996.  I was a teacher, walking my students through the hall, when I slipped on construction debris and injured my knee. I got up, but fell right back down.

Unfortunately, because I had injured myself at work, I had to file a claim with New York State Worker’s Compensation.  I had to wait over 4 months for an MRI and almost a year for my first surgery. I have had a total of 4 surgeries on my right knee.

Beth Stillitano

Beth Stillitano

I had only been married a year when I had my accident.  Before I was injured my husband Steve and I went skiing, biking and dancing together. I kept thinking Steve had not signed up for this and he would want to leave. Not the case at all; he accompanied me to my appointments, asked the doctors many questions, drove or arranged rides for me to physical therapy, and cooked. Steve became my all around caregiver.

As to exactly when the onset of Reflex Sympathetic Dystrophy (RSD) began, I am not quite sure.  In the late 90’s, my symptoms were not consistent with my injury. My knee was extremely swollen, hot to the touch, and had an off-coloring to it. The pain I experienced was so intense, I felt as if my knee was constantly on fire.

I was fortunate that I had doctors who diagnosed RSD very quickly.  No one dismissed me or told me it was psychological. I began treatment with a pain management specialist and was under that doctor’s care for over 10 years.  My treatment plan was medication: 22 pills every day, including OxyContin and Vicodin.  I was also in physical therapy three times a week for ten years.

But my knee pain got worse and the pain meds just kept increasing.

Living on Long Island was getting hard.  The cold was hard on my knee. When there was snow or ice, I stayed inside because I was scared to fall.

We moved to Charlotte, North Carolina in 2005. The warmer climate did help some.

A year or two later, I sought treatment with another doctor as the RSD seemed to be spreading to my right foot.  I started getting trigger point injections, nerve blocks, epidurals, etc. and they helped. I slowly weaned myself off narcotics and pain medications (not an easy process). My pain had not been eliminated but it had become a lot more manageable.

Just when I had thought I had things under control, this nasty disease decided to take a turn. The RSD spread to the right side of my neck, face, right shoulder, right arm, my jaw, and now my right eye – which is causing vision problems.  I no longer can sleep for more than an hour and a half at any given time.

RSD, which is sometimes called the “suicide disease,” has caused me to lapse into clinical depression. I fight that every day with therapy and medication.

My worst pain days are usually associated with guilt and depression.  I feel guilty that I cannot be the mom or wife I want to be, and that my children have had to overcome so much without me.  My husband and kids understand that there are certain days when even getting out of bed is a struggle for me.

My children have had to grow up very quickly. They had to learn to do many things for themselves and, sadly, many times they have had to deal with disappointments. We may plan an outing, but if I am having a flare up, plans need to be canceled or changed.

When my children were babies I could not give them a bath, as I could not bend down to the tub. I could not teach my daughter how to play hopscotch and when my family goes on a bike ride, I stay home.  When we go to an amusement park, I watch my family go on rides as I wave to them from my scooter.

I always wanted to chaperone school trips, but never could — it would not be safe to do so.  I cannot walk as fast or as far as the kids. Furthermore, I never know when a very bad day will pop up, so committing to something in advance is hard.

I went to college and have a Master’s degree, yet I can no longer work. Teaching was something I wanted to do since I was very young.  I very much miss being in the classroom.

I try to make it my mission every day to get dressed, put on makeup and have a smile. Yet that often only gets me the response of, “You look okay, so you must not really be sick.”

My doctors now say that I have Barre-Lieou syndrome, fibromyalgia, Dystonia, and clinical depression — all stemming from RSD. There are days when the pain is so bad that I am confined to my home and cannot care for myself or my family.

I am grateful for what I have — a wonderful husband, amazing children, supportive sister, reassuring friends and family. They all encourage me to fight and stay well even when I do not want to.

I know many people who have told me that they have been abandoned by friends and loved ones due to RSD.  Yes, some people did not want to continue our relationship; but the majority stood by my side.  My friends have taken me to appointments, driven my children to their activities, cooked for my family, called me, listened to me cry, sent cards of encouragement, and too much more to list.

"Beth's Bunch" at an RSDSA walk.

“Beth’s Bunch” at an RSDSA walk.

RSD is a horrible disease. Very few understand it. Many have not even heard of it. But I do believe my family is helping to make the world more aware of RSD.

My sister Jennifer has organized a team on my behalf, called “Beth’s Bunch.” This is the fifth year she will be walking in my honor at the RSDSA’s Achilles Walk. She has raised over $10,000 for RSDSA.

My children and my nieces are also helping. Instead of birthday presents, they ask for donations to the RSDSA and have yearly lemonade stands.

My son Landon has begun to work on his Bar Mitzvah project.  He is organizing a 5K race with a few friends to raise funds and awareness about RSD/CRPS.  The Fight the Flame 5K (www.fighttheflame5k.org) will be held on November 3, 2013 in Charlotte, NC. They are still in need of corporate sponsors.

My family has so much hope. I am living today because of their faith in me.

Beth Stillitano lives in Charlotte, North Carolina with her husband and 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.

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Authored by: Beth Stillitano

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I am tired of this pain I never say anything to anyone .

Beth, I am very very sorry that anyone has to deal with chronic pain of ANY kind. I too, am a permanently disabled college graduate (Registered Nurse). Since I was 37yo….. but what terrifies me about your story~is that, after a motor vehicle rollover accident, my 16yo daughter was diagnosed with RSD in her arm….I have done some research (she doesn’t want to know anything) and some schools of thought say that it can’t spread, while others say it CAN and WILL. Can you give me any advice that might help her? She has been down the nerve block road…when she was 17, they said they couldn’t do any more. She is currently 23 and in constant pain…but of course, the doctors see her as drug seeking. Thank you for your time.

Thank you so much Becky. I so appreciate that you have taken the time to learn about RSD and how it has affected us.

Kerry –
I am so sorry to hear that you are suffering so much. Please do not give up – everyday I search for new options/treatments. I know that one day I will find something that works. Reach out and talk to someone, look on Facebook there are some wonderful support groups. Contact Jim Broatch at rsdsa.org for some information.
I completely understand your pain, frustration, and helplessness. Unless you are living with this horrible disease, it is hard to understand that we live in excruciating pain 24/7.
I wish you low pain days.

I twisted my ankle 2 years ago. I have seen 14 different Doctor’s for RSD and have 2 Pain Doctor’s. I have the Spinal Stimulator and now I have Dystonia in my ankle. It is so bad that my foot is twisted inwards towards my other leg. I have had MRI”s, Bone Scans, CT Scans, Ultra Sounds and there is no help for me. I am having my foot and ankle amputated and there is nothing that I can do about it. All, I can say, is when someone says is your pain between a 0 and 10, well it is a 50+ Pain level. I have almost taken my life because of RSD, because if I have to live from the age of 51 to say 70. I will take my life before I live with this pain. I hope someone can understand what I am saying. I have had enough. Good luck to all who has RSD or CRPS, because I know the pain you are in. God Bless you all.

Beth, you are a lovely person, a volunteer extraordinaire, and a blessing to SCMS, and those of us who have the pleasure to know and work with you. Thank you for sharing your story with me. Having a family member who has not participated in life for 12 years, I can’t tell you how much I admire you and your family.

Thank you so much Christyne. Your words made me feel very special. Thank you for your prayers.

Beth you are my “HERO”! I have seen in person and in pictures, you have one of the most amazing smile that just touch a person heart. And to know your story – make those smiles more of a blessings to all who know you. God does things we do not understand but He is always with us and place the right people in our lives (most of all Steve and the kids). Always trust in God’s mercy, grace and most of all knowing that He is with you. My prayers will be for a cure for RSD and also that God will continue to give you comfort. Continue to live in His blessings.

Ann- I have looked for a long time to try and find a book that my children could relate to when dealing with this situation. I would love to obtain a copy from you — my daughter has already expressed a desire to read it.

Beth, I should say that I am not trying to solicit, or sell my book. I’m not even doing anymore book signings or anything around it because of my RSD. I just finally felt good enough emotionally to understand that I needed to freely share it in order to try an encourage others. However, seeing that you didn’t acknowledge my sincere and heartfelt email. I will give it to another who may need it. Sorry to have bothered you, but thanks again for sharing your story.

Dennis & John, I also thank you for your suggestions and have already started to explore them as well.

Dennis- what an amazing project. I do agree with you, spreading awareness is a necessity for a treatment/cure.

John -Thank you for your suggestions.

I quickly looked at NOI’s website. Graded Motor imagery is something new to me — I plan to look into it further.

I belong to some groups, all srtarted by RSD patients. It’s very good. Check it out at: US Pain Foundation or the INVisible Project.
People think RSD is getting more widespread but the truth is the doctors are recognizing it more and diagnosing it quicker. One of the ways awareness is working…slow as it is.

As I was reading this story I began to fill w/emotion. So much of this is my story. There are a lot of folks who still may not quite understand, however, those of us related in this disease, fully understand and thank you for your story. I would love to send you a free book. I wrote it for my children & other parents like you & I, because I couldn’t find one like it. Its called “I Guess My Mom Is Pretty Special.” Let me know where I can send it.

@ Beth. My suggestion is that you explore the NOI (Neuro Orthopaedic Institute’s website, because in my opinion these researchers appear to offer the best hope of successful non-drug treatment for your complex condition.

You might also like to read the discussions currently taking place on CRPS in the Body in Mind website (www.bodyinmind.org/