Reflex Sympathetic Dystrophy or Chronic Regional Pain Syndrome is not a diagnosis you ever want to hear, but it is something you should know about. If this condition can be diagnosed and treated within the first three months, there is a high success rate of cure. The later treatment starts, the less likely it is to fix, and is considered incurable- which is why its so important to promote awareness. Treatment is so often delayed by doctors misdiagnosis, “It’s all in your head” type mentality, when in reality, the disease is raging and grabbing permanent hold on your body.
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.”-WebMD
What Does RSD Look Like?
WARNING; Please be aware that some of these pictures are a bit graphic. These pictures are my own unless noted.
RSD is known to change the color, texture, characteristics and even shape of the limbs it affects. Color changes from deep purple, blue, and grey to scarlet red in total or in patches, streaks, spots and splotches. The temperature of the affected area can range immensely, and doesn’t even seem possible. From burning hot that is uncomfortable to put a hand against to an uncanny ice cold, regardless of the heat in the room or area. Skin becomes very shiny looking, any most hair growth in the area stops.
RSD in it’s most advanced form begins to deform, destroy, literally dissolve away the limb, often resulting in amputation.
At the age of 31, I was working for a lovely family in their high end jewelry stores and loving my job. I lived in heels, everywhere. My feet never bothered me, but my right foot began to get red, swell, and I felt a burning sensation after work. At first I wondered if I was having some allergic reaction, and since it was really starting to bother me, I made an appointment with the local foot doctor.
He told me that I needed surgery, and we were concerned about our families upcoming trip of a lifetime to Chile, where we’d be doing a lot of hiking. “She’ll be dancing in Chile!” the doctor told my concerned husband. He couldn’t have been more wrong.
The surgery involved breaking bones, so I knew I was in for pain, but not prepared to what I woke up to. I was in absolute agony. The pain I had felt before was ten fold, and the searing pain was pushing me beyond my limit. The doctor told my husband over and over “That’s to be expected.” “That’s to be expected.” “That’s to be expected.” He was arrogant, unfeeling, uncaring, and refused to believe that anything was wrong with me beyond being a big baby. We were at our wits end, no help, no hope, no idea what was going wrong.
Unfortunately, this is a very common story for those starting out with RSD.
A Second Opinion
By this time my leg was starting to turn purple, and I thought “Someone has to believe me.” I went to another doctor, who looked at me with a terrified face and said he was so sorry. He said he thought he might have an idea of what this was,he couldn’t even remember the name, but he’d never seen it in real life and he wouldn’t touch me- literally. He said it was way over his head, he had no idea where to send me, suggested calling around Boston, but he cared- and believed me. Step One.
A Wing and a Prayer
We had to find help. We had an almost diagnosis by a doctor who didn’t even know the name, but it was something. I literally opened the phone book, prayed, stuck my finger down and called the physical therapist I landed on.
As soon as this answer to prayer therapist saw my leg, he was in action, making phone calls and telling us that although he wasn’t able to make a legal diagnosis- he knew what it was- Reflex Sympathetic Dystrophy. He had working in a pain clinic in Texas, and of all people, he had worked with RSD before. He told us our doctor wasn’t helping us, and that he’d more or less told him that I was a just a waste of time head case over the phone, and that we needed a new doctor. Which as prayer would have it he knew.
Since meeting my amazing doctor, we have been working hard, fighting hard and doing our best. There is so much to fill in regarding what we’ve done to get to this point, and that’s another article. Although medicine says there’s no cure for this disease, I don’t believe that. I believe that I will get better and have a better quality of life. Even if I don’t, God has given me an amazing and loving family, a wonderful home and will provide for me one way or another. I have met such amazing people because we have RSD, I wouldn’t trade the friendships I’ve made with you amazing Gals for the world. I love each and every one of you deeply, and pray for your healing, families, strength and hope. You are amazing strong warriors, and don’t you forget it! You will beat this, and together will put this useless disease into the pages of history as an ailment that ‘used to have no cure.’
God doesn’t give us what we can handle, He gives us what we need to handle what we’ve been given. It’s easy to say “Look at what He’s making me go through!” But this fallen world is under attack by someone who wants just that- you to blame the one who loves you most. <3
Reflex Sympathetic Dystrophy Syndrome Association of America
PO Box 502
Milford, CT 06460