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Check Out International Research Foundation for RSD/CRPS Third Edition.
The first thing I want you to know...THIS IS NOT A MEDICAL SITE.
This is a PERSONAL site, that does have links to site's that have other information. Please DO NOT base ANY decisions regarding your medical care off of this site, or information you have found on the internet. Please talk to a medical professional. The information contained on this webpage, is information that I HAVE FOUND HELPFUL when finding treatments, options, and just plain MENTAL SANITITY as we are all going through different stages, symptoms and treatments.
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"What is Reflex Sympathetic Dystrophy?" That is the question I hear most often. Here is a You Tube Video that I used to tell people "If you really want to have a FRACTION of an idea of whats it's like - Watch This Video". This Video is called "Complex Regional Pain Syndrome". This video was uploaded by melgus99 and it was uploaded on Nov 27, 2007. Reflex Sypmathetic Dystrophy is now being called Chronic Regional Pain Syndrome by most doctors. It also seems to depend on which region you are in, as to which name the Professional Staff seems to use. There is another video that describes RSD/CRPS pretty well also. Its called "CRPS/RSD Awareness - The Truth". It was uploaded by Ailsa Lipscombe· and Published on Mar 6, 2012. This is the statement they left when uploading the video: "This video is about what it's really like to live with CRPS (complex regional pain syndrome), also known as RSD (Reflex Sympathetic Dystrophy). It's a nerve condition that leaves me in agonizing pain every day. Please help us to spread CRPS awareness and work towards conquering this pain once and for all."
There are hundreds more video's that I could add to this page. Or, if you are curious and want to watch more, you can find Video Journals of living with RSD/CRPS and tons of other videos about this debilitating disease all over You Tube. The picture to the left, is from a Website dedicated to RSD/CRPS. It took the doctors 2 1/2 LONG years to diagnose me, and in all honesty, it was actually my Physical Therapist that figured it out! She had treated another patient that had been diagnosed with it, and she saw all the same symptoms, and characters that were extremely similar even though our injury's were completely different.
I saw every specialist in the city I lived in, and they all told me there was no cure for this disease, and the best thing I could do, would be to move to a tropical climate. Well, that wasn't an option, because I had just moved back to this area so I could be closer to my family. Well, since there was no cure, and nothing the specialists could do for me, there was no point in me seeing them. So...back to my primary I went. They started me off on some nerve medications, and because this wasn't an actual Nerve Condition, I had a lot of side effects. So, They would add a medication to curb one side effect, and then those medications combined, caused other issues. I ended up on nine different medications because of the side effects! Well, if you want to know the full battle, of all that happened throughout my diagnosis up till now, please read my blog. This Webpage is meant to give you all hope....After fighting this battle for 10 years, I have FINALLY found something that actually helps!! I'm completely serious! I will not receive ANYTHING for creating this webpage and telling my story, accept the satisfaction that even if this helps 1 person, then it was worth creating. I ended up moving to a smaller city in Washington State. Since this city was even smaller than were I just came from, I honestly wasn't expecting the doctors here to tell me anything different. I used to surf the web every know and then seeing if any new "Cures" had come out. And, for the first time in my adult life, I had health insurance! I also had the most amazing support group! I had my best friend (the same one that took me to the hospital when I broke my hand) who had never doubted me, and now I had the most AMAZING Girlfriend ever! My girlfriend had actually given me a glimmer of hope! She suggested I search for a doctor who A. Knew what RSD was, and B. Would be willing to try and help me, not just medicate me. I found a clinic on the internet that was about 6 blocks from where I was working, who actually specified that they treat "RSD" and they were accepting new patients!! The day I found them on the internet and called them, changed my life! In addition to my RSD, I have Chronic Neck Pain because of some childhood accidents, they were willing to take that on as well! For the first time in my fight, they listened when I said "Fix Me! I don't just want pills for the rest of my life!" They said I was an excellent candidate for NeuroStimulation. At first I was very skeptical, but, I told them I was willing to try it. First, you have a "trial" stimulator implanted for 4-7 days to see if it works. Well, for the first time in 9 years, I made a fist!!! It may not sound like much, but I was able to do simple things like open my own Soda & Water Bottles, Open doors with my right hand, and the best part of the entire trial....I was able to hold my girlfriend's hand with my right hand for the first time since we got together 2 1/2 years before!! It was Awesome to feel her hand in mine! I used to struggle with simple things like tying my own shoes, buttoning my pants, shifting gears in my car, writing a quick note to my girlfriend. I used to write poetry every day, and I could finally do that again without writing with my left hand! Its amazing how many little things we take for granted! Since that day in March 2003, I have not been able to wear any jewelry on that side, and I still have not been able to get the memorial tattoo for my mom on my right side on my front shoulder as my sister, and sister in law have gotten. However, I got so much benefit from that trial stimulator, I wanted the permanent one!!! Well, I had that surgery on April 25th, 2012 in Lewiston Idaho.
To find out more information about Spinal Cord Stimulation, please click the button below! It has changed my life forever, in a very good way!
There are hundreds more video's that I could add to this page. Or, if you are curious and want to watch more, you can find Video Journals of living with RSD/CRPS and tons of other videos about this debilitating disease all over You Tube. The picture to the left, is from a Website dedicated to RSD/CRPS. It took the doctors 2 1/2 LONG years to diagnose me, and in all honesty, it was actually my Physical Therapist that figured it out! She had treated another patient that had been diagnosed with it, and she saw all the same symptoms, and characters that were extremely similar even though our injury's were completely different.
I saw every specialist in the city I lived in, and they all told me there was no cure for this disease, and the best thing I could do, would be to move to a tropical climate. Well, that wasn't an option, because I had just moved back to this area so I could be closer to my family. Well, since there was no cure, and nothing the specialists could do for me, there was no point in me seeing them. So...back to my primary I went. They started me off on some nerve medications, and because this wasn't an actual Nerve Condition, I had a lot of side effects. So, They would add a medication to curb one side effect, and then those medications combined, caused other issues. I ended up on nine different medications because of the side effects! Well, if you want to know the full battle, of all that happened throughout my diagnosis up till now, please read my blog. This Webpage is meant to give you all hope....After fighting this battle for 10 years, I have FINALLY found something that actually helps!! I'm completely serious! I will not receive ANYTHING for creating this webpage and telling my story, accept the satisfaction that even if this helps 1 person, then it was worth creating. I ended up moving to a smaller city in Washington State. Since this city was even smaller than were I just came from, I honestly wasn't expecting the doctors here to tell me anything different. I used to surf the web every know and then seeing if any new "Cures" had come out. And, for the first time in my adult life, I had health insurance! I also had the most amazing support group! I had my best friend (the same one that took me to the hospital when I broke my hand) who had never doubted me, and now I had the most AMAZING Girlfriend ever! My girlfriend had actually given me a glimmer of hope! She suggested I search for a doctor who A. Knew what RSD was, and B. Would be willing to try and help me, not just medicate me. I found a clinic on the internet that was about 6 blocks from where I was working, who actually specified that they treat "RSD" and they were accepting new patients!! The day I found them on the internet and called them, changed my life! In addition to my RSD, I have Chronic Neck Pain because of some childhood accidents, they were willing to take that on as well! For the first time in my fight, they listened when I said "Fix Me! I don't just want pills for the rest of my life!" They said I was an excellent candidate for NeuroStimulation. At first I was very skeptical, but, I told them I was willing to try it. First, you have a "trial" stimulator implanted for 4-7 days to see if it works. Well, for the first time in 9 years, I made a fist!!! It may not sound like much, but I was able to do simple things like open my own Soda & Water Bottles, Open doors with my right hand, and the best part of the entire trial....I was able to hold my girlfriend's hand with my right hand for the first time since we got together 2 1/2 years before!! It was Awesome to feel her hand in mine! I used to struggle with simple things like tying my own shoes, buttoning my pants, shifting gears in my car, writing a quick note to my girlfriend. I used to write poetry every day, and I could finally do that again without writing with my left hand! Its amazing how many little things we take for granted! Since that day in March 2003, I have not been able to wear any jewelry on that side, and I still have not been able to get the memorial tattoo for my mom on my right side on my front shoulder as my sister, and sister in law have gotten. However, I got so much benefit from that trial stimulator, I wanted the permanent one!!! Well, I had that surgery on April 25th, 2012 in Lewiston Idaho.
To find out more information about Spinal Cord Stimulation, please click the button below! It has changed my life forever, in a very good way!
Have some Questions on How It Works? Learn More Here!
Want to know if you are an eligible candidate? Find out here: "Who Is and Is Not a Candidate for Neurostimulation"
Here is some more information about Reflux Sympathetic Dystrophy (RSD/CRPS -Chronic Regional Pain Syndrome):
All this information was taken from NWOS (Northwest Orthopaedic Specialists, P.S.) Under Topic List: "A Patient's Guide to Pain Management: Complex Regional Pain Syndrome".
I would like to thank EVERY website out there that has been created to Bring Awareness to this Unknown & Incurable Disease!!!!!! Thank you to the professional staff who are also trying to bring awareness to this unknown, trying medical condition. Without Each and Every one of you and the scientists who are continuously doing research, this information would not be known. Thank you!!!! I would also like to thank my friends and family who have stuck beside me throughout this Trying Time in my life. I couldn't have done it without each and every one of you. My Best Friend, Nina Jones, who has never doubted me. Not even the day I broke it and nobody could figure out why it hurt so much! Thanks Bestie!! And last but Definitely Not Least, I would also like to thank my amazing Fiance` - You have given me the strength to continue fighting. You gave me the hope to Google a New Doctor and above all else, you gave me the courage to undergo my first surgery....The Neuro Stimulator. Without you by my side, I don't know if I could have gone through any of it. I don't know if I could have taken the chance to have another Doctor tell me there was no hope, or that there was nothing wrong with me. Christina Canida....Thank you for changing my life!!!!!
Want to know if you are an eligible candidate? Find out here: "Who Is and Is Not a Candidate for Neurostimulation"
Here is some more information about Reflux Sympathetic Dystrophy (RSD/CRPS -Chronic Regional Pain Syndrome):
- CRPS divided into two categories, CRPS I and CRPS II. CRPS I (caused by an injury to tissues - This is what I have) was previously called Reflex Sympathetic Dystrophy (RSD), and shoulder-hand syndrome. CRPS II (caused by damage to a nerve) was previously called causalgia. The symptoms and treatments of the two types are almost identical.
- RSD is felt to occur as the result of stimulation of sensory nerve fibers. Those regions of the body rich in nerve endings such as the fingers, hands, wrist, and ankles are most commonly affected. They say that this disease won't affect the actual Spinal Cord, or the Trunk of the body. However, after fighting this disease for so long, I am now having chronic neck pain in addition to the RSD. The last MRI that I will ever have, shows some deterioration of the top three vertebrae. I was advised that eventually these 3 vertebra will fuze together and the non stop pain should disappear once they fuze together. The doctors do not recommend having corrective Neck or Back surgery, as once you start, the surgeries continue. So, that's partially why I went with the Spinal Cord Stimulator.
What causes this condition? - CRPS commonly occurs after an injury as minor as having blood drawn, or a sprained ankle. Other times, it may be the result of a more significant injury such as surgery, a fracture, immobilization with casting or splinting, or the result of a stroke.
- Risk factors for developing CRPS include immobilization of the affected limb with a cast, splint or sling; smoking; genetics; and psychological factors.
What does the condition feel like? - Complex regional pain syndrome more commonly affects the hand or foot, but may spread further up the affected limb and even into the opposite limb. The common symptoms of CRPS are unrelenting burning or aching pain, skin sensitivity, swelling, discoloration, sweating, and temperature changes. If the condition becomes chronic, dystrophy or deterioration of the bones and muscles in the affected body part may occur.
The course of CRPS is commonly divided into 3 stages. - In the acute or first stage the affected region is painful, tender, swollen, and warm. Also, sweating, discoloration (usually red), and an increase in hair and nail growth is evident.
- The second stage is characterized by burning pain, allodynia, hyperalgesia, coolness of the skin, hair loss, changes in skin such as paleness, and brittle or cracked nails. Allodynia is when pain is felt from stimulation which is not usually painful, such as light touch or a breeze. Experiencing pain from the sheet over an affected foot or leg is an example. Hyperalgesia is an increased, prolonged pain response. This is from something that would typically result in only mild discomfort.
- The third stage is permanent and is characterized by dystrophy or defective growth of bones or tissue. It consists of muscle atrophy or shrinkage, bone density (calcium) loss, contracture, edema, and limited range of motion of the affected joints. Pain is worsened by any kind of touch and movement of the affected limb.
- Sometimes only two stages are used to describe this condition. Temperature of the skin is either warm (stage 1), or cold (stage 2).
All this information was taken from NWOS (Northwest Orthopaedic Specialists, P.S.) Under Topic List: "A Patient's Guide to Pain Management: Complex Regional Pain Syndrome".
I would like to thank EVERY website out there that has been created to Bring Awareness to this Unknown & Incurable Disease!!!!!! Thank you to the professional staff who are also trying to bring awareness to this unknown, trying medical condition. Without Each and Every one of you and the scientists who are continuously doing research, this information would not be known. Thank you!!!! I would also like to thank my friends and family who have stuck beside me throughout this Trying Time in my life. I couldn't have done it without each and every one of you. My Best Friend, Nina Jones, who has never doubted me. Not even the day I broke it and nobody could figure out why it hurt so much! Thanks Bestie!! And last but Definitely Not Least, I would also like to thank my amazing Fiance` - You have given me the strength to continue fighting. You gave me the hope to Google a New Doctor and above all else, you gave me the courage to undergo my first surgery....The Neuro Stimulator. Without you by my side, I don't know if I could have gone through any of it. I don't know if I could have taken the chance to have another Doctor tell me there was no hope, or that there was nothing wrong with me. Christina Canida....Thank you for changing my life!!!!!