Living with RSD

My name is Robert Roebuck I am 44 years old was diagnosed with RSD and this is my story :

I work in a physical rehabilitation center within a hospital in Knoxville, Tn. On December 23, 2004 I responded to a code blue in the rehab gym and started CPR. I did chest compressions for about approx 30 minutes with my right shoulder hurting during the entire time. When I stopped, I noticed that my right hand was very cold. so 2 of my co-workers a Physical therapist and an Occupational therapist attempted to warm it with a hot pack wrapped in a towel, which did not change the temperature.

I was off work the following day for the Christmas holiday and returned to work on Monday, December 27th even though my hand continued to be cold. On Wednesday morning I noticed my hand was turning blue and had swelling and was colder than before. My supervisor sent me to the emergency room where several tests were performed including an arteriogram which was suspicious for a blood clot. I was hospitalized for 6 days in the critical care unit because I was given TPA, an anticoagulant that can cause hemorrhage if not monitored closely.

The final diagnosis was undetermined with options including RSD vasospasms, and Reynaud’s Syndrome. I cleared to return to work after 2 weeks, while continuing to take Coumadin. However, each morning at work, I exhibited symptoms of right upper extremity swelling, coldness and changing to bluish color. This would improve if I were at home resting. After 1 week, I was sent back to the ER and a stellate ganglion block was recommended . I received the block mid-January. The symptoms returned the day after the block.

My initial physician suggested I go to Emory University Hospital In Atlanta ,GA for an evaluation. SO I did just that…..and at Emory, the Dr said he had never seen a patient with these symptoms and he suggested an EMG. I had also consulted with a Vascular Dr. (who considered the problem to be as a result of vasospasms) and he recommended I see a rheumatologist In the meantime, I also saw a Hematologist, because there was suspicion that my anticoagulants were out of balance. Basically all the physicians (approx 7 to this point) suspected RSD and eventually I was diagnosed with RSD in March 2005.

In April, I started occupational therapy 5x/week for 2 weeks, and then reduced to 3x/week for 2 more weeks. The therapy focused on shoulder rehab to reduce pain in the shoulder and increase range of motion in attempt to stabilize the shoulder to improve RSD symptoms. During this time period, the shoulder was very painful causing difficulty in activities of daily living, sleeping and job performance however, the right hand was not as painful. At this time, the symptoms of the RSD in my hand were not as intense as they would become later .

My job changed from being a rehab tech (heavy lifting, mechanical work, etc) to being the patient representative (talking with the patient, liaison between patient/nursing/therapy). I was able to do this, however, noticed that with any repetitive use of the right upper extremity such as writing 3-5 sentences, or placing 50 labels on a newsletter, I would have increased symptoms of RSD. My physician recommended taking extended time off from work; however, I requested to continue work as this gave me a diversion and occupied my time.

In August 2005, the symptoms of RSD worsened with nail thickening, unusual hair growth, and intense pain. Occupational Therapy was resumed with the focus this time on the right hand for treatment of RSD with weight bearing, stress loading, sensory desensitization, functional use of the hand and deep tissue massage to reduce the edema. Volumeter measurements were taken for objective data to gage the amount of edema in the hand. In early July, 2005, I noticed an intense pain in my neck on the left side. This remained for about 3 weeks.

I suspected that the RSD was moving to my left side. The Dr. believed it to be overuse from compensation of the weakened right arm. However, on July 25, 2005, I had symptoms of the left upper extremity with intense edema, color change, temperature change, and pain much worse than the right had been. The right arm was painful but did not have any other symptoms. A TENS unit was tried with some success in decreasing the pain. Therapy continued with the symptoms randomly going back and forth between the right and the left arms, however, they had not been symptomatic at the same time yet. This did occur later.

On October 11, 2005, I went to Vanderbilt Hospital in Nashville,TN . There I saw another Dr.who agreed with the diagnosis of RSD, but said he had never seen it move from one limb to another and go back and forth. He recommended an EMG and bone scan. The EMG was performed and the results showed damage at C5 and C6. The bone scan indicated no osteoporosis indicative of later stages of RSD.

On November 2, 2005, I went to a neurologist that Worker’s Comp recommended . He agreed with the diagnosis of RSD and he stated that if a person has RSD symptoms for greater than 6 months, it will be a lifelong disorder.

As of 1.5 years after being diagnosed, there are days that I am asymptomatic (hands cold, bluish, and swollen) but these can be some of my worst days. Occasionally, I have no visible symptoms, but I continue to have intense pain in my hands and arms. When I am at work or home, people often think I am able to do things, but I have to continuously explain that I cannot do things like I used to .

The next problem is not knowing the future. Am I going to deal with this the rest of my life, am I going to end up an amputee, how is it going to affect my job and my income? Playing with my 11 year old daughter has changed - I can’t run with her, throw Frisbee with her, or do most physical activities we previously enjoyed together. I went from being a professional fighter, bench pressing 365 pounds, and now I am on 5 pound lifting restrictions. The past year has been an intense emotional roller coaster that has affected every aspect of my life.

Even though many people do not know about or understand RSD, ( even some physicians ) , it is one of the most devastating things that can happen to someone. Since I work in a physical rehabilitation department, I am surrounded by people who know about RSD and who have treated RSD. I cannot imagine how isolating and lonely it would be for people without this kind of support.

As of December 2005, I have been to 16 different doctors who all agree that my condition is RSD, that I will more than likely deal with this the rest of my life, and that there is a lot more to learn about this disease.

I have an analogy that best describes how I feel about my life and the past year. I used to be a professional boxer and the last match that I was in, I was sick with the flu and bronchitis. After about 30 seconds into the first round, I was totally exhausted. I had no idea how I was going to finish the fight and certainly didn’t think I was going to win. I was tired, beat down, hurt, couldn’t breathe, had cramps in the legs, was moving slow and couldn’t respond the way I wanted to. I don’t know what I did to pull it off, but somehow, I just kept trying to get through each round one at a time. This is what I am going through now with this situation. And by the way, I WON THE FIGHT!!!!!!!!!!