I am a businesswoman, a wife (to Isaac), a mother of two children (Jessica, 29 and Jonathan, 26), 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 20 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 expected. 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. 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.

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 upon.

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. Then, my life changed again. In December 2004, I had an unfortunate accident where I slipped and fell, injuring both my knees. 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. 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. Unfortunately, had there been more research for RSD, I’d have known this would not be the case.

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 was a patient in an experimental treatment which puts the subject in a 5 day induced coma with Ketamine. It worked! I could walk more, I didn’t need my wheelchair as much, and my body temperature and swelling was much better. Unfortunately, injuries including surgeries cause this RSD to flare back up. I was diagnosed with Peritoneal Mesothelioma and had to have a very invasive 8 hour surgery which left me with a huge scar down my upper body. This made the RSD go crazy and I now experiencing extreme RSD pain, am back in my wheelchair, and the pain is absolutely excruciating.

Please know that this is just my story. There are MANY other people suffering from this disorder and they need help. Please help in any way you can. Come to the walk, help get the word out, educate yourselves on this horrible disorder that can affect ANYONE, and please if you can give a donation. Whether that be of the monetary kind or of your time, it all counts and it is all appreciated!!