"So you're ready to come back to work soon?"
 

This is one of the lines I've had to hear every time I see my co-workers since I was taken off work so many months ago. It's a line that says to me, "I haven't heard a word you've said while you tried to explain RSD!". I hear this every time they see me, yet all I can do is explain again.

I'll start with the pain and some personal background. Because even though the ignorance surrounding RSD is hard to deal with, the pain is the hardest.  My RSD made itself known in January of 1998. I woke up with a hand that was 3 times it's normal size and most of my hand was numb and unusually painful.  But I went to work as normal, and was barely able to last the day.   (I know, you're asking why the heck did this fool go to work? Well I'm not the type to take days off unless I'm almost dying. So in I went.)   I saw the Doctor that afternoon and was diagnosed with RSI or a Repetitive Strain Injury, (Carpal Tunnel Syndrome). I was later to discover that this was only a partial diagnosis. This was the beginning of my personal trial.

My RSD manifests itself in my right arm, my dominant arm, and runs from my fingers to my neck. The only way I could describe the pain was an extremely intense sunburn at first. But it also feels like a thousand bee stings, or knives flailing the skin off my arm! It's like a medieval torture that I endure EVERY day.. ALL day! And that is the worst and most misunderstood part, CONSTANT PAIN! And that is what it is, constant and intense pain. Of course there are varying degrees of pain, various degrees of swelling, and things that make it worse. After 4 months of living with this I was final given the opportunity to get the only known treatment for this disabling condition and am now in physical therapy. I have undergone a series of Stellate Ganglion nerve blocks and have been doing as much therapy as possible at a treatment centre. To my dismay the improvement has been minimal and only in range of motion.

In the effort to figure this disease out I have been poked and prodded, pulled at and pushed. And all of this was literal agony on my arm. It's been quite some time since I was diagnosed now, and have been in therapy since the Worker's Compensation Board has been able to get me in. There have been problems I've come across since then. One is that therapy is two hours away in a major center, which used to take me away from my family for a week at a time! The problem with this is that my family is my only support system. My wife is my dearest friend and is the only person that can tell when I'm hiding my pain, and yes I hide it most of the time. And without her around I have to deal with this alone, something I pray no one who contracts this disease ever has to go through! But this disease also affects your mind, the constant pain takes it's toll on your memory as well as your self-worth and constitution. So without my support system I've noticed some emotions I've never really had before. I used to be happy and full of fun, but that's been replaced with a depression that is always waiting for an opportunity to set in. As well as an abundance of anger that is almost too much to control. I've actually been caught with my head literally out my car door window threatening people, and that is NOT ME!! Support is a necessity with this affliction, and make sure to let the doctors and therapists know that too!!

I mentioned my memory has started to go. Let me explain. In the fighting that ensued with WCB (worker's comp.) and my employer, it was finally decided by my Doctor that I should receive some pyschological counselling. I started to see a therapist in my hometown. In one of my sessions with him he explained how any type of chronic (or continuous) pain takes part of your consiousness too control, which in turn causes some memory loss or a lowered thinking capacity, as your brain is dealing with this pain automatically.

In my encounters with the many Doctors I've seen I was fortunate enough to meet Dr. Mark Cherry, an anesthesiologist in Regina, Saskatchewan. He was the Doctor that did my series of nerve blocks. While I was speaking to him he explained in not so technical terms what goes on with CRPS. It works like this, The sympathetic nerve is NOT a pain conducting nerve. It's function is to control blood flow throughout the body. Well what this disease does is enable the sympathetic nerve to GROW PAIN ENDINGS. So the nerve has two functions now, and they are not a good combination, see I FEEL the blood flowing through the viens now, that is what causes the burning sensations and sensitivity! Some of the drugs used to treat the swelling are anti inflamitories. I can no longer take them as I developed a bleeding peptic ulcer from overuse in the first part of my injury, when I was mis-diagnosed by the first Doctor. He went a little crazy with them as the swelling was profuse.

Now on for the ignorance. This disease is considered rare, less than 200 000 Americans are afflicted with it. I have no stats on Canadians at present, but I don't presume it's any more prevelant here. So with such a rare disease comes the lack of knowledge, especially in the general public. Since I was diagnosed Melody has found us a number of excellent site online with explanations. I have had quite a time dealing with my employer on many issues, and the fact that there is no known cure for CRPS/RSD is one of them. It seems rather convenient that there would be a cure according to their occupational therapist, but none according to ANY other source we've found. Now don't get me wrong, I pray everyday that there will be a cure, but  the company I work for are a bunch of wealthy bullies who think they can get away with anything they please. They have tried numerous times to bully me back to work against my Doctors orders, and bully me to their company Doctor. (And we all know where the company Doctor stands now don't we?) So we've done a thorough and extensive search to find out as much as we can about this disease so we can better inform those who are curious and those who need to know. We've put some of these links on the first page of our CRPS/RSD website, which we hope you'll find helpful.

I hope this page has helped you in some way, or at least encouraged you if you're going through a trial. Remember that God doesn't give us more than we can handle, and if He believes you can deal with it then you should too.

I will add more as time goes on, so please feel free to come back and have a look.

Thank you for your time,
Bob.