Sterling’s CRPS Journey

My Journey on being diagnosed with Complex Regional Pain Syndrome, RSD/CRPS—“Suicide Disease.” It all started last year in February 2015 when a foot doctor removed my toenail, instead of improving, this only increased my pain. In fact, it created a pain unlike any other I have ever experienced. The doctors gave me a large boot to wear and put me on bed rest thinking this was the answer. Little did they know that this was only making things worse. As the pain continued with a consistency that did not even allow for sleep, the doctor ordered an MRI and then decided he needed to permanently remove the toenail, amputate the top of my toe, take nerve biopsies and check for a bone infection. Again, this made the pain even higher, which by this point I thought was not possible. At this point I was in continual pain (24 hours a day, 7 days week), my foot would not heal, the pain was now spreading. My leg was so sensitive and in extreme pain that I could long rest it on a pillow and I could not have even a thin sheet lay over my foot without doubling over and screaming in agony. In addition, my leg and foot was very discolored (they looked like they were frost bitten), my toes looked deformed and my foot swelled. The pain included a burning sensation that felt as if I had stuck my leg in a bucket of ice water, but could never take it out, and it is a burning pain that is indescribable. We were able to find a scale that described the level of pain I was going through and it reached far beyond even cutting off your own limb on the pain scale. I could not remember what having a good night sleep was like, kept my wife up at night crying and moaning with pain and she begged to take me to the ER. I kept seeing the foot doctor week after week he would put me on bed rest and did not understand why I was not healing and only digressing further down in this path of torture. One day that I will never forget he said to me, I think you may have Complex Regional Pain Syndrome. Instead of finally getting some relief because my disease had a name, it was frightening because he, the doctor giving the diagnosis, could not explain what this disease was and proceeded to tell my wife to Google it and send us to a pain clinic. I was shocked that he couldn’t explain his own diagnosis, but I thought at least we know what it is now and can go to the pain clinic to fix my foot and pain, which was spreading up my leg. I could not have been more wrong. We went to the pain clinic and the doctor said, “yes it is CRPS and I cannot explain it you, you need to Google it for information, there is no cure, but I think I can help you.” Who says they cannot explain a problem, but then thinks they have a solution? With distrust and a heavy heart given the lack of knowledge from, by this time, six (6) different doctors, my wife was enraged and started searching for answers on her own. Sadly, she found that most doctors have no clue about CRPS (some have never even heard of it even though over 50,000 Americans are diagnosed with it each year). If that was not terrifying enough, we found that everything the pain doctor had done to help me have been proven to only cause the disease to spread and the pain to increase. We still gave this pain doctor a chance to help relieve my condition (at this point, you are willing to try anything to be pain free for even a few minutes). This doctor prescribed and we proceeded with a few nerve blocks, loads of painkillers, and other crazy medications; however, my condition only got much, much worse. The amount of pain I was living with was unbelievable (and worse, extremely difficult for others to understand) and it was overwhelming that nothing could ease it; not even pain medication. We chose not to work with that doctor and was on a quest to find one that knew how to help, we had doctors tell me it was all in my head. He actually told me to just go fishing or something and forget about it. The impossibility of this disease and the thought of not finding any relief was not acceptable. To our surprise there was NO doctor that could help us. We were even considering and are still considering going out of the US for help.

These are the facts about CRPS:

• Doctors know nothing about it (there are only a few scattered across the entire globe and it is not easy to find them)
• It is not covered by health insurance, but over 50,000 people a year are being diagnosed with CRPS
• The standard pain scale, called the McGill pain scale, ranges from 1 to 50, with 50 being the highest amount of pain. CRPS patients are living at a 50 most of the time, which is more painful than childbirth and amputation of a limb
• This amount of and variation of pain leaves most patients completely bed ridden or confined to a chair.
• CRPS starts with a trauma of some sort and varies widely in patients
• CRPS is a chronic disease with no cure
• Touch to the infected area is painful
• It causes discoloration and temperature changes, deformities, swelling, sweating, muscle spasms
• CRPS also often spreads to other parts of body, even organs
• The current belief is that CRPS is caused by damage or malfunction of the peripheral and central nervous system.  The central nervous system is composed of the brain and spinal cord, and the peripheral nervous system involves nerve signaling from the brain and spinal cord to the rest of the body

CRPS is also called the suicide disease; 60% percent of pain patients die from overdose or suicide. Believe me, there are days in which you do not know how you can take any more; family is what helps you keep going. This disease is so debilitating that most cannot work, which means that keeping up with the ever-increasing medical bills is impossible. My pain has not decreased. My current regimen helps me find ways to cope and live with it, but I still have to push through every minute of the day. I work hard to not let the fears of this complicated disease get to me. There have been some treatments out there that are helping patients, but the insurance will NOT cover them and they are not available in most states. On top of all that, they say that stress increases the symptoms since it is part of the central nervous system (so the problem only compounds).

This is a complicated disease and not enough research is being completed by doctors and medical institutions to help those with CRPS. Most patients are on disability, welfare, etc. I have been lucky to keep my business through this trial. I work with teenage boys helping them make changes to their own lives; this is my passion, this is what gets me out of bed everyday regardless of pain. These young men have pain too, just in a different way through addictions, behavioral disorders, PTSD, depression, etc. They keep me from giving up, along with my loving family. With all the research my wife has done, I now work with the U of U pain clinic, Homeopathic doctors, take several vitamins, and exercise the best I can, but its still not enough. I need to try some treatments that will take me to Arkansas for several weeks at a time. We are highly hopeful that this treatment will work, but I will keep trying other forms of treatment until I find remission. I want to thank everyone that has helped me get this far already and I will be forever grateful to those around me at this crazy time in my life. I hope through my struggles I will be able to help others who have this suicide disease. We need to spread information on CRPS as there are several people diagnosed with this disease, but do not have the amazing tenacity of my wife to keep researching every possibility. There are also so many that are suffering with the disease, but have not been diagnosed properly or are still dealing with prideful doctors that ignore the research and numbers; they keep hearing that it’s all in their head. When in reality they have a painful disease (the most painful disease in the world) — but there are options! CRPS needs a voice and it needs to get LOUD! Spread the word in hopes that we can reach everyone seeking answers and relief!