November is RSD/CRPS Awareness Month

Awareness months seem commonplace these days, and so it can be easy to ignore them. Then of course, something hits home with you in a personal way, and you feel the need to be part of the awareness. As the parent of a young man with autism, I have written about autism awareness. This month, I am writing as a person with RSD.

What is RSD/CRPS you ask? Well, according to the National Organization of Rare Disorders "Reflex sympathetic dystrophy syndrome (RSDS), also known as complex regional pain syndrome(CRPS), is a rare disorder of the sympathetic nervous system that is characterized by chronic, severe pain. The sympathetic nervous system is that part of the autonomic nervous system that regulates involuntary functions of the body such as increasing heart rate, constricting blood vessels, and increasing blood pressure. Excessive or abnormal responses of portions of the sympathetic nervous system are thought to be responsible for the pain associated with reflex sympathetic dystrophy syndrome."

Now, this post is not to seek sympathy, but to increase awareness. So many live with what are sometimes called invisible diseases. It can be difficult for those who love us to come to terms with the fact that we are in pain. My late husband hated my pain more than me. He felt completely helpless, not an easy thing for a loving spouse to feel. The first few years-I experienced my first symptoms in 2001 on our honeymoon-I felt a lot of guilt. Yes, guilt. It isn't easy knowing that family times and plans depend on how Mom is feeling that day.

It took a year before I found the doctors I rely on. Rare disorders are like that. Most doctors have limited knowledge of the disorder and even less knowledge of how to deal with it. I was misdiagnosed by several doctors. Really unfortunate because if diagnosed early there is a chance to stop the progression. I was progressed into phase 3 of 4 before I found the right doctors.Still, I was not finished with unknowing medical professionals. After I found my wonderful neurologist, who not only knew what was wrong with me, but knew how to help me, I had to change my primary care  physician. The one I had been using quite simply looked at the diagnosis from the neurologist and told me there was no such thing as RSD and that I was imagining it.

Now RSD has been in the medical literature for 150 years. The name has changed through the years, in fact the name has changed since I developed it in 2001, but it has been written about since the Civil War. So, you can imagine how disheartening it was for a physician I trusted to look me in the eye and tell me I was imagining the most excruciating pain known to exist. He simply refused to continue treating me if I persisted in seeing my neurologist for treatment of the RSD. For me, this is underscores why  we need to have an RSD/CRPS awareness month.Even doctors need to be educated.

Twenty five years ago when I first started seeking answers for what was different about my son, it became obvious that educating people was going to be part of the equation. I had never met anyone dealing with autism, and so I found myself researching and studying so that I could educate family, friends, even the doctors and educators we were dealing with. Fast forward,and I am find the same need to educate when it comes to RSD. Luckily, we now have more avenues open to research, share information and connect with others doing the same thing. All too often when you are dealing with something you can feel isolated, as if you are the only person in the world who has to go through what you are going through. In this day of social networks and awareness months it is so good to know that there are others out there who understand.

While no two people have exactly the same experiences, it is always helpful to know that you are not alone. This disorder is not easy to live with. There is no cure, and as horrific as enduring the physical pain can be, the psychological and spiritual pain can be even worse. It is not easy being in pain, being treated badly by the medical establishment,misunderstood by friends and family, needing large doses of narcotics just to get through the day. It will wear you out. It isn't even easy to describe the pain you are feeling.OK, imagine that someone has set your nervous system on fire, is applying a cattle prod and attempting to shred the flesh from your bones with a giant meat fork, all at the same time. I told you it was hard to describe the pain that an RSD patient endures. NOW multiply what you imagine that might feel like by about 10,000.You might be getting an idea of the severity of the pain. Honestly, that is the best picture I can give you. Now imagine that the pain that is constant at about a 6-7 out of 10 can be spiked up to about a 12 out of 10 (I am not exaggerating) simply because the fabric of the skirt you are wearing was touched by a puff of wind. The pain colors every moment of your life. Every breath you take. Am I enjoying a sunset on my deck? What if the wind comes up, what if the fabric in this skirt is scratchy, what if I simply breathe deep and the pain flares? You have to think about these things,and learn to deal with them.

Of course, RSD is not the only disease/disorder that involves chronic pain, there are way too many. It just happens to be one of the diseases I have (it is the only one I talk a lot about, I won't bore you with the other 4). There are an estimated 5 million people worldwide suffering from RSD.The reason I talk about RSD is so that other people can be encouraged to talk about what they are dealing with. It is my small way of saying that you can learn to manage your pain, and perhaps even to manage to have a life in spite of it.

You can learn to manage the pain with medication, good doctors, and with the meditation and breathing that you use for so many things.For me Faith is so important in learning to manage something like this.Some days you might be stuck in poor pitiful me mode, but Creator will not leave you there. Most High will whisper to you that your next blog post should talk about the pain. So Spirit will nudge you to share your stories, share about the pain that is so integral to what is going on in your life.Share that I really do believe I have the choice to pray for healing, the choice to deal with the disease should healing not come. Life is all about choice. I choose faith in my Creator to overcome even the most painful disease known to man. What choices do you have today?

A Glimpse of one part of my life...

I was sitting downstairs in what we call "The Tropical Getaway", which is in reality just the corner in the basement that my sweet husband fixed up just for me. It's where I go to meditate when the weather is wet, or winter and I can't get outside to my deck. But I digress-I was sitting down there meditating, and my mind was wandering around the issues of my becoming disabled.

I remember the exact moment I first felt the excruciating pain of RSD. RSD stands for Reflex Sympathetic Dystrophy. Also known as CRPS.Anyway, according to the National Organization for Rare Diseases:

Reflex sympathetic dystrophy syndrome (RSDS), also known as complex regional pain syndrome, is a rare disorder of the sympathetic nervous system that is characterized by chronic, severe pain. The sympathetic nervous system is that part of the autonomic nervous system that regulates involuntary functions of the body such as increasing heart rate, constricting blood vessels, and increasing blood pressure. Excessive or abnormal responses of portions of the sympathetic nervous system are thought to be responsible for the pain associated with reflex sympathetic dystrophy syndrome.


The symptoms of reflex sympathetic dystrophy syndrome typically begin with burning pain, especially in an arm, finger(s), palm of the hand(s), and/or shoulder(s). In some individuals, RSDS may occur in one or both legs or it may be localized to one knee or hip. Frequently, RSDS may be misdiagnosed as a painful nerve injury. The skin over the affected area(s) may become swollen (edema) and inflamed. Affected skin may be extremely sensitive to touch and to hot or cold temperatures (cutaneous hypersensitivity). The affected limb(s) may perspire excessively and be warm to the touch (vasomotor instability). The exact cause of RSDS is not fully understood, although it may be associated with injury to the nerves, trauma, surgery, atherosclerotic cardiovascular disease, infection, or radiation therapy.

But back to what I was thinking about! I remember the exact moment I felt that first excruciating pain. We were on our honeymoon! Our honeymoon was a family affair. Combination dream vacation for our son, and wedding trip/honeymoon. We had planned the trip for a while, it was our son's dream to visit South Dakota and Mt. Rushmore and Crazy Horse monuments. So, we saved up and planned our trip. Mr. Bill surprised me with wanting to get married while on the trip-but that's another story for another time. This story is about living with pain, unending, excruciating, disabling pain...every hour of every day for the rest of my life.So there we are at Mt Rushmore during the first week in August in 2001. Walking up the steps to the entrance of the Mt. Rushmore monument this pain, something I had never felt before, went from my lower back through my hip and down my leg to my knee. It literally stopped me in my tracks. I had to find a place to sit down and catch my breath and wipe my tears. I think back now on that moment and am surprised at what a memorable beginning -at least for me- to a strange and difficult journey.The pain only lasted about 2-3 minutes that first time. It didn't return while we were on the trip, and so I chalked it up to being overweight and out of shape.

We had an amazing incredible trip. The Black Hills are 'take your breath away' beautiful everywhere you look. You can feel the sacredness of the ground you stand on with every step you take.We cherished being able to make that trip. We got home and life goes back to normal after vacation. You go back to work. That first few days is always a chore. Especially when you have been someplace as incredible as the Black Hills. Your mind wants to be back there. So a few days after we got back I was at work, and the pain happened again. Took my breath away, tears coursing down my cheeks. Then it started happening every day, several times a day. This was something I couldn't ignore any longer. I talked to Mr. Bill about it. Told him what was going on with my body, and made my first appointment with my primary care doctor to see if he could tell me what it was and how to fix it.By January, the pain was constant, and I couldn't walk without help. So I spent the next 7 months on crutches, visiting doctor after doctor, trying to find out what was wrong with me. Of course, there was a doctor or two that just told me it was because I was morbidly obese, and if I lost weight it would go away. I had been losing weight, but it is a struggle. I usually walked every day, but since that wasn't an option anymore, losing weight had become really hard. So, that January I had also joined Weight Watchers.

Then there were the doctors who treated me as if I were just imagining things.The doctors that thought I needed to have back surgery, the doctors that put steroid injections into my lower back. NOTHING we tried gave us the answer, and the pain continued, getting worse every day.There is really no way to describe the pain of RSD. There just aren't words in the language to give you a picture of how bad this pain is. Fortunately, after going through a half a dozen doctors, I met my neurologist. Nine years later he is still the doctor that directs my care. I often refer to him as my 'beloved' neurologist. In addition to him I also see a pain management specialist.

My 'beloved' neurologist was the first doctor who told me I wasn't crazy, I wasn't imagining things, there was a name for what ailed me and we could not ever cure it, but we could manage it. That first time I met him,he was performing a nerve test ordered by a different doctor. The doctor that ordered it told my husband and me that it would show that there was nothing physically wrong with me, and then he would refer me to a pain psychologist. When the neurologist came in to perform the test, he asked me questions. He talked to me about  my body's response to the test-I wasn't sure I would live through the pain- and he told me to go home and look up RSD on the internet.

When I had recovered from the test in the next day or two, I did exactly that. Looked up information about RSD. I immediately saw that I had all of the symptoms of this terrible disease, and the information I found was really scary stuff. So, I made an appointment with the neurologist, he studied my test results from all of the previous doctors, and diagnosed me with RSD. He literally changed my life. It had a name, other people were  living with it, and I wasn't just an overweight,middle aged, hysterical female.I had a disorder of my nervous system. There were ways to manage the pain, but I would never, ever again be pain free.

OK, imagine that someone has set your nervous system on fire, is applying a cattle prod and attempting to shred the flesh from your bones with a giant meat fork, all at the same time. I told you it was hard to describe the pain that an RSD patient endures. NOW multiply what you imagine that might feel like by about 10,000.You might be getting an idea of the severity of the pain. Honestly, that is the best picture I can give you. Now imagine that the pain that is constant at about a 6-7 out of 10 can be spiked up to about a 12 out of 10 (I am not exaggerating) simply because the fabric of the skirt you are wearing was touched by a puff of wind. Mr. Bill and I switched the side of the bed so that he wouldn't brush up against my bad leg.The pain colors every moment of your life. The PAIN become almost another member of the family. Can we plan a family outing? Depends on how Mom is feeling.

 Until the summer of 2009 I worked a full time, standing on my feet, walking all over the store job. It was a job that not all healthy people would have had the energy for. I loved my job. I kept working as long as I could. I gave it my all. The morning before Mr. Bill was killed, we discussed that I wasn't going to be able to do it for much longer. We discussed how to achieve my being able to cut back my hours, how to achieve financial stability while I was working less. It was something we were going to talk about and plan for. We never had that opportunity.

Since then, the disease has spread. Originally the pain was localized to the area from my hip to my knee on my right leg. Now, the pain is from my waist down, both legs. Lower back to toes. The pain is managed most days, but there are days that it simply is more than I can handle. When my son and I took our trip last fall I had to schedule a day every two days for resting and recovering. The pain complicates every single aspect of your life. Every breath you take. Am I enjoying a sunset on my deck? What if the wind comes up, what if the fabric in this skirt is scratchy, what if I simply breathe deep and the pain flares? You have to think about these things,and learn to deal with them. It was easier when it was a smaller part of my body. But, it has spread, and you work hard to manage.

So some days are better than others. Some days I just need my cane, some days I need my fancy purple walker, some days it is a good thing I have a wheelchair. It is one of those invisible diseases. I don't look sick, you can't see what I am dealing with. But it is there, unimaginable excruciating pain. Changing the skin, changing the muscles, changing your very existence. You never know what someone else might be going through.

I am sharing my stories so that someone else might be encouraged. You really can learn to mange something as awful as RSD. You can learn to deal with whatever life throws your way.You can thank your God for a good day. You can pray blessings on the cranky guy that yelled at you because he decided you didn't need that close to the door parking place. You can learn to manage the pain with medication, good doctors, and with the meditation and breathing that you use for so many things.

Faith is so important in learning to manage something like this.Some days you might be stuck in poor pitiful me mode, but Most High will not leave you there. Most High will whisper to you that your next blog post should talk about the pain. So Spirit will nudge you to share your stories, share about the pain that is so integral to what is going on in your life.Share that I really do believe I have the choice to pray for healing, the choice to deal with the disease should healing not come. Life is all about choice. I choose faith in my Creator to overcome even the most painful disease known to man. What choices do you have today?