RSD Canada

I had never heard of RSD – Reflex Sympathetic Dystrophy until I was diagnosed with it in October of 1993, just short of my 33^rd Birthday. I was a female, aircraft technician serving in the Canadian Armed Forces. On that morning, I was outside, doing my regular fitness training. As I crossed over a broken cement sidewalk I tripped. In response, I put out my right arm to cushion my fall. My landing was pretty hard and so I went immediately to the Military Base hospital because I was experiencing pain in my hand.

My right arm was x-rayed and the doctor suspected a Scaphoid fracture. My hand and forearm was put in a cast. I was placed on light duties at work. Over the next couple of weeks, I went through several casts, and further x-rays. No break or fracture showed up. Needless to say, the pain seemed to be increasing and it was now keeping me awake at night.

After the last cast had been removed, I noticed that my hand seemed puffy; there was a change in the skin colour and temperature. It was also more sensitive to touch and temperature. The hair on my arm which was very fair in colour, was now darker and longer near the thumb area only. I pointed out my observations to my doctor. He consulted with another doctor who came and examined my arm. He suspected I had RSD. I was sent to an Orthopaedic Surgeon who suggested Guanethidine Blocks that could be done by a qualified Anaesthesiologist in a larger city hospital.

During the period I awaited to get my initial appointment, I was prescribed Amitriptyline to help reduce the pain. I experienced many of this drug’s side effects: extreme dry mouth, loss of appetite, blurred vision, light headedness, dizziness, drowsiness, extreme insomnia, psychosis, anxiety, constipation and weight gain. To counter some of these effects, I found that Jolly Rancher candies help to keep moisture in my mouth. I’ve been a vegetarian since I was 13, so I tried to continue eating healthy foods even though I wasn’t hungry, so as to keep up my strength. I drank lots of water and ate a lot of fruit, especially large cans of peaches to try and counter the constipation. I found that I was now not very functional first thing in the morning because that was when the medication seemed to affect me the most. Life for me had become slow motion, like moving in thick mud. I wasn’t able to do my usual work outs at the gym. To keep from putting on too much weight, at the end of each day I would dress warm and force myself to walk from the Base into town and back, one step at a time, or slowly walk through fields of snow with my dog to put more resistance for my gross motor skills. The RSD was in my right hand which I now had limited use so I switched to my left hand. This transition was a little easier for me as I was use to working with both hands as a technician. My friends and family had to grow accustomed to my new penmanship. Writing cards and letters (they seemed to take me forever to write), was a good stress reliever and helped me to focus my thoughts and keep me in a better mood. I also was dependant on other people for drives as I wasn’t in any condition to drive myself.

I started my blocks finally in January 1994, going twice a week in the early mornings. It is bad enough to experience the sensation of a limb falling asleep from poor blood supply and the pain when the blood supply returns but it did not prepare me for the pain and the uncomfortable sensation of this treatment. The Anaesthesiologist used a large cuff to cut off my blood flow while injecting Guanethidine to help interrupt the sympathetic nerves sending pain signals. I was given the narcotic Fentanyl, to help reduce the pain from the restriction of blood flow at the start of the of the process. When the cuff was removed, I found I would have additional pain. Talking this over with the Anaesthesiologist, the narcotic in later treatments would be split to a before and after shot. Before the cuff was inflated and an after shot, given before the cuff was released. This I found made the pain manageable. I knew when the narcotic was in effect because when I would first arrive, I had no appetite. The narcotic would then give me a sense of euphoria and my appetite would increase to the point that I could have eaten a whole banquet table of food had one been put in front of me. Each time, after the drug wore off, I would feel very nausea and no longer be hungry. I settled into a routine of eating a mint chocolate bar when I’d leave the hospital.

The treatment seemed to be helping, as my condition wasn’t getting progressively worse as it is known to happen. That was, until the day, the Anaesthesiologist had a previous engagement and left a nurse to carry out the treatment. Well, the treatment that day lacked one ingredient, the narcotic. I waited for the drug to kick in, but it never did. I asked the nurse several times if she had administered it into to IV. She assured me she had. Well, she didn’t, and when the time came for the cuff to be removed, the pain shot from my wrist to my shoulder.

On my insistence the staff got hold of the Anaesthesiologist and I was informed there was nothing she could do until our next treatment the following Monday, five long days away. I called the Anaesthesiologist at the end of the week. I told her the whole story of what happened and after that, no one else administered the treatment but her. At our next appointment, the treatment brought the pain back down to my wrist. What a scare for me.

In between these sessions I was going to physio where they had started using “tens”, acupuncture for muscle stimulation and pain; finger exercises for flexibility; and fine motor skills therapy. A last resort treatment that was offered to me, was to have surgery for the removal of the sympathetic nerve. I was assured that I would have no more pain but that I would also have lose of sensation like feeling hot and cold. I declined, feeling that I had not explored all my options. Thank goodness I had. One day, while I was at Physio, a university student who was doing her practicum mentioned that she had read about a treatment for RSD that was being used in England. She brought in her book and this is what it called for: The use of extension and compression. For the location of my RSD, I would first have to carry around a bag with weights (or books) and then using a scrubbing brush, hold the brush in my hand, scrubbing in circular motion on the floor or bench. I felt it couldn’t be as painful as the cuff so I was game to try. I had to get medical chit from my doctor allowing me to carry a bag in my right hand. (In the military, most things are carried in our left and this leaves the right hand free for saluting.) When I started, I actually found it brought some immediate relief. My condition started to improved. My doctors, Orthopaedic Surgeon and Anaesthesiologist were surprised. My sensitivity to temperature and touch diminished. My Physiotherapist was now able to have me put my hand in warm wax, use ultra-sound and eventually wrist exercises with weights. I no longer had a hairy patch. By the summer of 1994, I was cured from RSD. I was also able to stop taking Amitriptyline and return to regular duties and driving.

Taking Amitriptyline had prolonged effects that had to be resolved:

-Trying to lose the weight gained by this medication;

-Having perpetual insomnia for the next six years.

After a time, I adjust my diet and exercise level once I was off the Amitriptyline. My metabolism was still being affected by my lack of sleep. My immune system too was run down allowing me to catch every possible cold I encountered. My doctor had me take increasing doses of Serotonin to try to get me to sleep. The medication gave me severe headaches. One day while driving home from work, I had a spike in carbohydrate cravings. I was vibrating. I pulled into grocery store parking lot and quickly ran in to buy some bread and plain doughnuts returning to my vehicle to stuff my face. I got off this medication. I never gave up. I was convinced that the root of my sleep problem was my sleep pattern having been disturbed. I had always had good, restful sleep. After being cleared by a psychiatrist that my sleep problem wasn’t a psychiatric condition, I was finally allowed to be placed on a waiting list to visit a sleep clinic. The staff at the clinic ran several tests and easily identified my sleep problem. I wasn’t going into the normal deep sleep that everyone has. By putting me on a schedule, I was able to reset my sleep pattern in one month. Amazing! My energy level returned and I was like the battery bunny after that.

It took thirteen years from the start of my RSD to total recovery. I feel it is important for people suffering with RSD to be knowledgeable, ask questions, challenge their doctors and share information. I hope my story will help others as they discover ways to recover from RSD. I understand there are now Psychosocial Support Groups. I was fortunate to have had access to needed medical care and the emotional support from my family, pets, friends, my bosses and co-workers.

- by Paola Bertoia

21 Aug 2009