First of all, Is It Real?
ABSOLUTELY!!! WE are NOT imagining that horrendous pain we are feeling no matter what anyone is telling us! What we feel is REAL and NOT in our heads!
Well, let me rephrase that. In a way, it is in our head because that is where the Sympathetic and the Parasympathetic Nervous Systems are located, at the base of our skull. Also, our Central Nervous System is right above that, so yes in a way it is in our head, but not our imagination. Then they all attach to our spine. From there, we have Peripheral nerves all through our body and all nervous systems that are attached to our spine talk back and forth from the Peripheral nerves to the brain discussing our pain and where it is. The brain will then send back pain signals back to the injured area. It just takes such a small amount of time for this conversation to take place.
With RSD/CRPS, the conversation gets stronger and stronger as time continues and there is no pain management. At some point, all of our nervous systems can become involved in our disease. That is why early diagnosis is so vitally important.
Let’s take a look:
Next time someone says, ‘it is in your head’, you just say to them, ‘oh have you been doing research? Thank you for taking such an interest in my autoimmune disease and discovering where it begins!’ That just might stop them because they won’t expect that answer. Then, you can just smile sweetly at them and walk away.
People don’t understand how mean they really are to Chronic Pain patients as they try to shock us out of our current behavior. They think they are helping, but because of their ignorance of the disease, they are only hurting.
Also, our confusion, memory, exhaustion, and insomnia are not just generated by our pain, but the Limbic part of our brain which sits on top of head like a little hat. I like to tell people my Limbic hat is crooked today. They look at me funny, but it does start conversation.
RSD/CRPS is not a rare disease. It is a silent one. There are so many strange symptoms to this disease that patients don’t want to start talking about it. People react to it in two ways. One way is total and complete disbelief and they will turn away from us and either start spreading rumors or will never speak to you again. The other way is their eyes glass over and they stop listening. They are so shocked by what we are saying that they can’t take in the shock of it. Either way, it seems we lose most of our friends and a lot of our family members with just ignore us or try the shock treatment. They will try comments like; ‘You have to want to get better to get better’, or ‘You have just gotten lazy, just get up off that couch and you’ll be fine.’, or ‘Just go back to work.’ Or other hurtful things. Try not to cry. They just simply do not understand. Don’t believe them either because we know better!
Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome is an autoimmune disease and has the highest known pain to man. On the McGill Pain Chart from the McGill University, this highly respected and often used Pain Chart rates RSD/CRPS at a 42 out of 50 with nothing higher. It rates pain in 4 different ways.
Pain is subjective upon how the highest pain a person has felt. If a person has broken a bone, about a 20, then they cannot imagine what a 42 feels like. If a person has only stubbed a toe, then a 42 is quite beyond their understanding. What I do is try to give them an image they can feel. Can you imagine cutting your arm down to the bone? That usually gets a shudder. Then I will say, now pour acid in it and have imaginary fire ants crawling and biting on your skin that keeps turning different colors. That usually at least gets their attention. Maybe not their understanding, but at least their understanding.
If you would like more information on RSD/CRPS visit Amazon.com and look RSD/CRPS from a Patient’s Perspective by Deb Lundquist, edited by Dr. Philip Getson, DO.