HOW AND WHEN DID YOU GET RSD?
I got it in 2007, after a stress fracture and groin strain (in the groin and pubic bone). Poor therapy and doctor guidance led me to still go to work (walking on injured leg). I am a trainer. I was not working out but, to make money, I still walked, climbed subway stairs in NYC to get to work, and then stand on my feet to train clients. Instead, I should have been ordered rest.
In January and February of 2008, after working with two therapists, my leg and muscles in left hip and left abdomen started to pull very hard and leave me in pain spasms for hours at a time. I cannot describe them. They felt like electric jolts in my pelvic bone, like an electric wave was vibrating inside me for hours. Certain things would set it off; like touch, intense sound, surprising sounds and movements, temperature changes, etc. I was 4'11¾” tall, weighed 112 with muscle and I dropped to 88lbs in three months. Also, my hair was falling out in clumps.
In March 2008, after I moved the wrong way in a meditation class sitting on the chair---causing a massive spasm---I broke down and was immediately taken to a pain management doctor (who SAVED MY LIFE!). He diagnosed me immediately, put me on bed rest for two months, put me on sedatives and muscle relaxers and 1200mg. of Motrin a day to use as a pain killer and an attempt to heal muscle tissue, as well.
In April of 2008, I met with the doctor, the therapist and a Reiki healer. My RSD took about a year to come undone, and in another year I got very mobile, and in two years I got strong. In this year of 2013, I have Restless Leg Syndrome and a strange sensation in my left leg, but no pain. I think I was able to save myself because I knew how to strengthen weak muscles that were holding onto tendon spasms. If I wasn't aware of my own body and fitness when I got hurt, I think RSD would have done me in forever…believing even that fitness in earlier years helped me come back.
The Reiki put me into very relaxed mental and physical states, where I was able to disconnect from pain and move better after each session. Also, my RSD was in my pelvis; a big bone, surrounded by a lot of muscles, tendons and blood. I think people who have it in their extremities (feet and hands) suffer so much more (because blood is easily constricted at extremities, if muscles tighten and skin swells).
I was stuck in my hip. By February of 2008, I could not walk or go down stairs. Then in April 2008, I was put in 90 degree water to learn to move my limb and start to walk. Walking in water eventually coaxed the limb into movement. Even though I was in pain and had RSD spasms with therapy, I did not give in to them. I let them pass and went back to therapy the next day.
IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?
My training career is about helping others in pain; healing their injuries with re-alignment of joints. I work with all populations. My experience with RSD made me calmer about life. I love having a balance. I will not over-work myself. I know when to rest my body.
DO YOU HAVE A GOOD SUPPORT SYSTEM?
YES, A VERY GOOD ONE !
*I was in therapy for a long time. I wrote a lot about what I went through; even a mini-book, though not published.
*My parents and my best friends were amazing.
*The Reiki healer was my ex boyfriend’s mother. My boyfriend and I broke up in 2009 but he was very supportive. We did mall walking and he got me to go on an escalator again in May of 2009.
*I stay on Lexapro for anxiety about RSD coming back.
DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?
Yes. I am not very religious but I prayed and cried to God a lot.
I cried out to my late grandmother and asked her to hold me spiritually.
I cried very, very hard for weeks. I wanted my leg back so badly.
In April of 2009, I started having running dreams. In my dreams, I could run. I would wake up from them and realize I was dreaming, but I remember the physical sensations from my dreams in my leg .
I prayed just to walk again. I didn’t care about being a trainer again but, as I started to walk again, I realized-I am going all the way…I want my life back.
HOW HAVE YOU RE-INVENTED YOURSELF?
I am a very strong person. I was strong when I got hurt but I am very humbled now. I am very balanced in my life. I work hard, heal other people and make sure to nourish my own needs, too.
HAS ANYTHING GOOD COME FROM THIS TRIAL?
WHAT THINGS DO YOU MISS THE MOST?
WHAT DO YOU WANT THE GENERAL PUBLIC TO KNOW ABOUT YOU AND/OR YOUR DISEASE?
That there may not be a cure BUT Reiki, group meditation, acupuncture and water therapy--even if they do not cure---can maybe relieve the symptoms for just a few hours.
Learning to live with disease, not looking for a cure, then giving up on yourself and never wanting to try new therapies…I have met many RSD people who kind of give up or do not really have the resources I had. They almost do not see all the possibilities. They rely on only their Western doctor and call it a day, I used a lot of Eastern healing. I almost went to a native American healer to help me.
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