Reflex Sympathetic Dystrophy (RSD)

I was told to do some hydrotherapy at SCGH. They had a beautiful heated pool (~32°C I think) in which I and other people with arthritis swam around in with floaties. When I started doing hydrotherapy at my local pool, I figured it would be much better to try to walk in the water instead of just floating. The buoyancy of the water would take a lot of my weight so I could bear the pain on my feet, which both had CRPS.

I also used a lane in the pool (actually I asked the pool center to put a lane in, as they never had one before) where the depth went from about 2-3 feet to 5 feet, so this way as I was walking in the lane I got good variation in depth to give me some respite from bearing my entire weight on the sore feet. I also found that the rough surface in the old pool was useful to give the nerves in my feet some stimulation.

Innovation & Impact: All of this took place in the early 1990s. It was not a common thing to see people walking or running in a pool. I started a trend at my pool centre and after a few months other people were also using a lane. The centre had now blocked off 2 lanes for people like me. When the numbers got higher and we had to share lanes, I devised a rule of sticking to the left. I recall one time that there were something like 5 people in one lane and we walked up and down staying to the left like traffic. One could also pass someone else if they were too slow, but had to overtake in a safe manner not to interfere with oncoming traffic. It worked fine. At one time we might have had up to 10 people in the 2 pool lanes at the pool centre

I originally had this as pont 2, but AI took it out (when I asked it to reformat my webpage to be Smart Phone friendly), thinking it was the same thing.  After Walking Hydrotherapy I did Running Hydrotherapy in my local pool. This help to increase my fitness much quicker than walking and increased the blood circuation in my body, both of which I figured would be beneficial for me. The resistance in the water also helped me gain strength in my limbs. This was important in my overall recovery. I guess you know why people started doing hydrotherapy but let me mention it in case you do not. When astonauts went into space, their limbs deteriorated because there is no resistance in a space station. Someone came up with the idea of hydrotherapy as a way to increase resistance and muscle growth by working out in a denser material like water.  

While walking up and down in the pool I realized that some of the pool's surface was rough, and that this was good for my feet, so when I was not in the pool, I would often take all my socks off to gently rub my feet over a rough surface, like a straw doormat. They helped to resensitize the feelings in my feet.

Later when the RSD spread into my hands I used to rub them on uneven surfaces as well. It is helpful to touch your affected areas as often as you can without over-activating them to resensitize them.

I used to wear up to 5 pairs of socks (some quite thick) so as to cushion my feet when I tried to walk. I had elbow crutches and used to go for walks away from my house. If I got into trouble I would ring my wife to come and get me, or made a route whereby she would come and fetch me if I had not returned in 45 minutes or so.

Here I was using the socks for cushioning but later I realized that compression is important as well. See point 5.

Critical Point: With RSD, you have to constantly push yourself through the pain barrier. This is how you start to rewire your nervous system. I was constantly doing this every day. I did about ten times what any physiotherapist recommended. It became an obsession with me to exert pain onto myself and push through it no matter what. I knew in the back of my mind that it would take around 5 years to rewire my nervous system.

When I went to see Dr. Owen one time, he wanted to examine my feet. He saw that I had 5 pairs of socks on. He laughed and said I was like a snake shedding its skin. I told him I wore so many pairs of socks because it cushioned me when I walked and also felt that the pressure on my affected areas helped as well.

It was like when you cut yourself it helps to alleviate the pain by applying pressure close to where you cut yourself, but in this case I applied pressure directly on the RSD affected area. About a week later I heard that Dr. Owen had made 2 other people who were in hospital wear pressure stockings on their affected limbs. There was one girl who was in hospital the same time as me that was also diagnosed with RSD. She hated wearing the pressure socks, but she did not realize you need to take pain to receive gain. I don't think she ever recovered.

When I first got RSD, my left heel used to become extremely bloated and hot and I used to apply ice to it. It seemed to soothe the pain, but after I was diagnosed with RSD, I knew that the sympathetic nervous system controlled pain, blood flow and body temperature, so I also used heat to alleviate the pain sometimes.

I used to have a hot sauna and spa at my local pool. It helped heaps. Sometimes when I felt like the RSD was running out of control at home, I would fill the bath with hot water, to the point of almost being unbearable initially and insert my foot into it. This also helped to reactivate (or deactivate) the sympathetic nervous system and it would often alleviate the pain.

My philosophy was that the more I exercised, the stronger my body got and the more pain I could manage, as well as by increasing the blood circulation in my body, I would be providing my body with nutrients to heal my dystrophy. I became obsessed with exercise, constantly pushing myself beyond what anyone would recommend. I had to beat this debilitating disease. I wanted to restore my life.

Motivation: Another motivation to do all of this was when my brother came to see me in hospital after I had not walked for 5 months or so, he made a comment about how my legs had wasted away. I immediately found a pair of crutches in the ward I was in and I started doing a circuit in the rheumatology and geriatric wards. I drove the nurses crazy who were given the instructions to keep me in bed. Dr. Owen changed that for me and gave me the freedom to exercise and walk around the 2 wards with elbow crutches.

Mental Approach: Help yourself. Nobody can help you as much as you can help yourself. Stop playing the victim. Stop looking for sympathy. It is all negative. Take control of your pain and your life as best you can. 

When cycling I use to listen to Bob Dylan to motivate myself. Try to find something like this to motiavte yourself.

Pain killers do not work well with RSD. Morphine might alleviate the pain but it is an addictive drug and you need to take more and more. It will lead to far greater problems down the track. Dr Owen advised against going on Morphine, but I am allergic to it anyhow.   I never thought that pain killers worked much at all with RSD, so I did not take them often, but I did notice that taking mixed doses of many pain killers seemed to be more effective than a single agent. Keep that in mind but do not become reliant on them. Their effect wears off anyway.

One of the major things associated with RSD is the stiffening of joints. It is important that you keep moving an stiif joints with exercise. Initailly my left ankle started to freeze uip, so I would exercise it profusely by moving my foor up and down and twisting it from side to side. It is important to keep this in mind with you particular limb of RAD focus.  

I was particularly sensitiev to air flowing over my skin, especaiily cold air. To combat this, I use to waer long-sleave shirts in winter. If cold air affects you tto, reduce air flow over affected limbs. I also blocked all air conditioning vents in my office at Curtin University. Stay away from things that activate your RSD.

Long-term Reality: RSD never actually goes away. It diminishes. It can return. 30 odd years on I am still experiencing symptoms. Sometimes it can even flare up a lot. Recently I was in hospital for a broken ankle. It happens to be the same left foot where it all started but I don't think the break brought it back on a bit. I think it was the air-conditioning in the hospital.

I feel the air conditioning trickle over my skin, and RSD flares up in this way. The trickle turns into a higher intensity and drifts into pain, which can intensify. When I was really bad, even after living with it for a few years, that intensity can keep going up until your limb is hurting like a broken bone (intense pain with a numbness feeling), followed by the ultimate pain that feels like someone is inserting a knife into your nearest bone and rotating it.

My Mother's Wisdom: Life can be challenging sometimes, but you have to tell yourself to keep going. My mother used to say to me, "Someone has it much worse than you, so don't complain. Say 'welcome pain, welcome trouble,' and deal with it the best you can with a positive mind. You cannot deal with it with a negative mind." Get on with life as much as possible.

As I was exercising there were times I felt rather comfortable. I would try not to aggravate it at these times. I would try to enjoy the peace by doing something I could not do when the pain was too intense, and it used to get so intense I could not even think.

REM Sleep Discovery: As a neuroscientist, I knew that there is no pain in REM sleep, and in the first few years this was the only time I had absolutely no pain. I knew this to be true because I would often wake up after a dream awoke me and I had no pain. My RSD started off in my left heel and spread to my left foot and later (about 6-8 months in) into my right foot. I used to sleep with my feet hanging off the bed.

Hospital Example: I recall Dr. Owen coming to see me with his student doctors to show them how a good patient was trying to cope with RSD while lying in a hospital bed. I was also a good example of a very positive person, as while in bed I would have about 50 scientific papers scattered around me. It showed that I wanted to beat this nasty disease. My RSD flared up 2 years after it started because I had an accident on a colleague's chair which dug into my right shin. By this stage the RSD was well into my 2 feet and my lower left leg, but the part that flared up the most was my left heel where it all started.

On Free Will: I often believe there is no free will because it does not make sense that our minds should be able to instigate a neural network process by thinking about it. I believe our brain tricks us into thinking that we are in control. What really happens is that our brain is busy processing information it receives and reacting. The part that is free will is us not doing something in the dying hundredths of a second that we have been conditioned or have learned to be wrong. That is all I think we are capable of actually doing. Our belief that we are in control is an illusion.

Consciousness is Serial: We are only conscious of about 10% of what the brain is doing. I am not conscious of how my limbs are moving, how my mouth is eating food, etc., unless my attention is diverted to them. The other thing about consciousness is that it is a serial process. You can only see, hear or do something in a sequential manner.

Vision Example: Take vision for example, you can only focus your vision onto a piece about the size of a five-cent coin held at arm's length. When you divert your visual awareness to another place, the previous place goes out of focus and becomes part of your peripheral vision. Your brain is still processing information from the other areas and you can quickly divert your attention to another region if required, say if something diverts your attention, like a movement or sudden change. This is also true of your other senses as well. If you try to listen into what someone on the other side of the room is saying you will divert your attention away from the person you are talking to. There is no such thing as multitasking. You are just swapping your attention from one task to another repeatedly and quickly.

Programming Your Subconscious: Mind The above is a very clear demonstration that your conscious mind is a small part of your entire mind or brain. So there is clearly a subconscious mind/brain as well and a lot of what you do or feel is automated without your direct control, if we have any control at all. This brings me to how we may be able to program our minds. What I see, hear and experience is all part of my conscious mind, so I can use these senses to program my subconscious mind.

If I write something down on a piece of paper, like "I can do this thing I want to do," this activates my sensorimotor skills to write it as well as my visual awareness. Now take that piece of paper and read it out aloud. This motivates your visual and auditory senses, as well as your vocal senses. Before you read it, look at it intensely with as much of your conscious mind as well. You say it and you hear it. I believe this is a good way to program your subconscious mind. Your mind will start to believe that you really can do this and you will more than likely do it. They say, being confident is halfway there to achieving what you want and this is a process by which you can do that. It is a way to inject some positivity and confidence into your brain. Try it. It works for me.

Another thing that worked for me, by which I mean helped me, was to apply a topical cream/ointment which made that area "burn" as the active ingredient was chili or capsaicin. It worked in the very same way that pressure and heat take your mind away from the pain. Sometimes I would do all sorts of things to try to reverse the RSD pain.