Dear Dr. Kirkpatrick,
It was such a pleasure to meet you and learn that there are warm, caring, learned people in the world like yourself and Dr. Cantu. RSD has been a very quiet, very hidden, and very neglected disorder in so many ways. Whether it was who, what, where, when, why, or how, the questions have always been many, but the answers so slim. My family and I thank you from the bottom of our hearts for your attention and your research. We were feeling so lost and so very very very close to giving up any hope we had for help or relief in this struggle that is RSD.
I am a businesswoman, a wife (to Isaac), a mother of two children (Jessica, 24 and Jonathan, 21), and a woman suffering greatly from RSD/CRPS. I have been in debilitating pain for a very long time due to this disorder, close to 16 years.
When attempting to trace the start of all the pain, March of 1992 comes up. I was treated for a fracture in my right index finger. A cast was placed with full recovery.
Soon after, however, I started experiencing extreme itching and an unbearable burning sensation in my right hand radiating to my right arm and elbow, which I tolerated, albeit in confusion. In early 1993, I went to see a hand specialist regarding my itching and pain. The doctor requested an MRI on both arms, which I was told showed unusual swelling. As a result, both of my hands were put in braces, and both my elbows in pads. The itching and pain persisted, however, and the same physician then told me that I would need a surgery for Carpal Tunnel Syndrome to resolve my symptoms. This would be done one hand at a time. Right hand first.
The day after the surgery, I started suffering from excruciating pain. The pain was horrible, burning, I had loss of movement and my hand was turning blue. The operating physician had suggested that al this was the cause of a cast being on too tight. I decided to get a second opinion. I went to see another physician who diagnosed me with RSDS in my right hand. I did not know what that meant. At the time I thought maybe it was a virus that would go away with time. Little did I know the torturous road I was about to embark up on.
Throughout 1993 and 1994, I underwent a series of some 40+ right neck ganglia blocks. They gave me very minor relief, 12 hours maximum. The relief was very temporary and within the year, I went to see a pain doctor who put me on biweekly intravenous treatment with bretylium sympathetic blocks to treat my right upper extremity.
Towards the end of 1995, the RSD started to spread, but since there was not too much, if any, information about it there was not much to do. Similar pain flared up in my left foot. The same bretylium treatment was now also applied to my left foot, and within weeks, the horrific pain spread to all of my extremities. By the end of 1995, I was getting bretylium treatments twice a week for the next four years in both arms and both legs.
Those bretylium treatments were lengthy and very painful, but I was somewhat relieved in-between treatments, mostly because my body was so full of this medication and so much drugs. The treatments and medication had taken a tremendous toll on my quality of life and health. It was hard to focus on my work, or have quality time with my children. The pain and the drugs had me so out of it that my life was becoming increasingly hard to continue in the ways I had before. I decided, then, to stop those invasive treatments and seek alternate ones.
In early 2000, I sought out a Chinese Medicine Doctor in Vancouver, Canada. I took whatever herbs he prescribed to me. I had few ‘treatments’ with this doctor. Mostly, they were pressure point applications along with herbal skin patches. After 3-4 months of this alternative treatment, I felt some relief. I had finally gotten back some of the quality of life I had before! I could hug my loved ones again. I could sleep the night through without the socks on my feet or the blanket on my body waking me from desperate shooting burning pain.
Then, my life changed again. In December 2004, I had an unfortunate accident where I slipped and fell, injuring both my knees. The MRI results that came out, supposedly did not reveal any tears or ruptures. We were so pleased! Sigh. All was not well, though. My knee pain continued and worsened, however, and my mobility was quite hindered by my knee pain and swelling, to the point where I could no longer even use stairs.
In the meantime, I developed severe neck and jaw pain. While seeking treatment for this pain, I was diagnosed with TMJ. The Dr. was convinced the TMJ was directly related to my RSD. There are days when I can barely talk because the pain is so intense. He put me on mouth guards to alleviate the neck and jaw pain.
The knee pain got worse and worse. It became so bad that I could no longer ignore it or wish it better. In March of 2006, I underwent arthroscopic surgery on both knees, to hopefully alleviate the pain and increase mobility in my knees. I had high hopes as did the rest of my family that this surgery would be the answer. I had truly convinced myself, from the bottom of my heart, that I no longer had RSD. I had decided that it had been gone for those years and that I had beat it.
I knew there were risks of the RSD coming back or flaring up when having surgeries. However, since I was so sure it was gone, I decided to go ahead and have the surgeries on both knees at the same time. I had convinced myself that IF the RSD was to flare up, it would be to my own benefit to have it happen on both knees at the same time. I was hopeful and determined to fight it once and get it over with all at once. Thereby, hopefully causing pain, but for a shorter amount of time. HUGE MISTAKE. The pain has flared up so badly, so intensely, that I am still unable to recuperate. I had blocks right after the surgery, followed by Lyrica and other pain medications.
Since the bilateral knee surgery of March 2006, I have undergone extensive physical therapy (myofascial release) and rehabilitation. However, I am unfortunately still unable to walk without support, and have been confined to a wheelchair due to my limited mobility and pain. This pain is now in both my legs and feet, and arms and hands. I have been suffering from severe itching attacks in both my arms and hands. There are times where the itching is so bad that before I know it, I am bleeding. My hands swell to the point that I can’t use them, and have been extremely sensitive to anything touching, or even getting close, to any part of my skin on my extremities. My hands and feet get so cold that it feels like ice inside my body, burning ice.
I am desperately seeking a relief and am very excited about being part of this study. I do not have enough words to express my gratitude, love, and support for the both of you. You are a huge asset to not only the medical profession and community, but to this disease and the fight against it as well. Your approach to patients is so unique and welcome. It is people like you that make all the difference in this world. Thank you for all your effort and kindness as well as your knowledge. Thank you for giving my family and I the hope of once again enjoying a life without pain.
La Jolla, California
THROUGH A DAUGHTER'S EYES
Having a parent, especially a Mother, who suffers from RSD has been extremely painful for my brother and I. My name is Jessica Cohen and my mother is Elena Cohen. She has suffered and been in pain for as long as I can remember. This disorder has put a huge cloud over all of our lives as she was misdiagnosed/diagnosed when I was just 9 years old. I am now about to turn 25 this coming summer and cannot believe this horrible ordeal may have a chance, a hope, of being over soon.
I am a very happy person and really did have a very happy childhood with tons of memories to share. Well, that is what I tell people anyway. Though I have amazing memories of vacations, pets, family get-together’s, figure skating competitions, soccer games…the most prominent memories are those of witnessing my mom at the Hospital as she got all those drugs pumped into her. She would tell us how it felt like her entire body was on fire, but inside. I saw pain that could not be described because it was so intense. I remember doctors not understanding, not knowing, judging, not believing. At times, most times recently, the pain is so intense for her that I have had to take the blankets off, the socks off/on, the pajama pants off because of the intense stabs of burning. There are times she cannot use her hand or arms because the pain is so strong and I have to talk her into letting me put a silk blanket on her body to adjust or give her SOME comfort.
I remember the times where the vacations stopped, swimming in the pool and playing with my mother did not happen anymore because she could not handle the water’s touch. I remember how she could not come to see me ice skate anymore because the ice was so cold, the cold air stabbed into her like daggers. I still have visions of my mother all drugged out on all these poisons/medications after 4 hour biweekly treatments at the Hospital and going to her room to help her stand and holding her up as she attempted to limp to the bathroom. That was not a way to live and I am so empowered and have been so impressed by the way she has taken control of her own life. I have met others with the disease or disorders in general and not ONE person has been unimpressed by the strength, courage, and power my mother has. She is a reminder that we are the leaders of our own lives. Striving for the best and not letting anything get in your way will ultimately get you what you want.
This disorders is disgusting. It takes no prisoners. It has no sympathy. Thank you so much to Dr. Kirkpatrick and Dr. Cantu. The both of you are amazing unbelievable people and doctors. The way in which you have both taken an active interest and active fight against this disorder and its debilitating effects is so commendable. I feel so privileged to have met you, Dr. Kirkpatrick and cannot wait to shake your hand Dr. Cantu. My family and I are forever grateful for your pursuit of happiness and a pain free life for those suffering from RSD.
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