- CASE FILE
I have a disease called Complex Regional Pain Syndrome. This disease is referred to as the suicide disease due to the extreme pain.
ABOUT THIS CASE FILE
I am a veteran that is service connected disabled due to this disease. It is very sad how the medical field does not know about this disease. I have been to many different doctors and nurse practitioners here at the VA clinic. I have attempted to find a Dr. on the outside of the VA for treatment, however there is not anyone in town that has any idea how to treat it. I have tried many different treatments that folks that suffer from this has suggested. I have listened to conferences that doctors have shared and have tried their recommendations and have attempted to educate the doctors here with my disease but it has fallen on deaf ears. I cannot find any doctor that treats this in Amarillo and have asked these doctors if they have any recommendations on where to go without any real answers. I have had many different treatments that were unsuccessful and now the VA tells me they cannot do anything else. I have been told by the leadership ship here that the VA is seeing more and more of these cases but that they have no treatment plans for this debilitating disease. This is also the same thing I have found outside of the VA, is that there is very few folks in the medical field that understands this disease or has even heard of it. I have many issues with this as it affects all aspects of my life. I am in excruciating pain all of the time. They always ask what is the pain level from 1 -10 and I am always 8 or above. My mental state is out in left field as I go through different phases and then even become suicidal. I can see why this disease is referred to as the suicide disease by many. When one looks at the McGill pain scale they will see it is one of the most painful things known to man. My vision is so affected by this disease. Just yesterday I sent an email to the Optometrist at the VA and explained to him the eye drops that I have been on for 7 months are not helping with the burning, watering, blurry, and double vision. He suggested that I go to the urgent care or emergency room, however neither one of them new what to do about it. As you see when this affects a person it affects one's life in many ways. I have been on many different medications but none of them has helped. I can send you a list of them if you would like to see what the VA has had me on. I continually beg them not to give me those opioids as they do not help me and only make other things worse. I have had multiple injections, epidurals, nerve blocks all to have no effect on my pain. During the injections for pain the Dr wanted me to tell him when I could feel a sensation going down my leg, I was never able to fee anything. I did have an EMG by a neurologist and he said I had nerve damage, I told him I figured I did as I was diagnosed with CRPS. All he had for me was methadone twice a day for pain, that did not do anything for the pain. He then told me after I took those for 2 months and explained to him they did not help that he would not see me if I did not continue to take them. I was told by a DR. not to take meds more than 2 months if they are not doing anything. I have had a trial spinal cord stimulator installed for a week, only to have the Dr. that did it tell me that it was working that I just didn't know it was. I never got any relief from below my knee. As you see I have done many things but nothing helps. I see folks on other CRPS sites say the same thing and then I see folks swear by some of the meds I have been on. One thing I have noticed is that folks with it in there feet seem to not get any relief from any of the medications and other treatments. One thing I hope happens here is that folks from the medical community can see this and maybe they can find hope for us that suffer from this horrible disease.