- CASE FILE
I wanted to raise awareness to a rare autoimmune disease with early diagnosis being a key to recovery vs. a lifelong battle.
ABOUT THIS CASE FILE
RSD or CPRS is chronic pain that develops as result of injury, stroke, surgery, or heart attack. A trigger of an immune response causes the sympathetic nervous system to go haywire. There are 2 types, depending on the severity, they can last for a few months, or years, and in some cases, the rest of your life.
I injured my 2nd metatarsal on the shower door, the pain got worse and my foot turning purple on occasion, so I went to a podiatrist who ignored my concerns and told me I re-injured my foot and to put a 'air boot' on due to my active lifestyle. The pain became even worse to where I could not touch my foot, so I went for a second opinion and was quickly diagnosed with RSD. The pain was so severe, I could not walk on my foot and used a scooter / crutches. I was referred to a pain mgt. doctor who managed my syndrome with medications and lumbar injections. My husband is a doctor in the emergency medical field for over 30 years and he never heard of this syndrome. Almost fully healed, I broke my ankle on 2nd foot 3/8/19 with the syndrome coming back with a vengeance. It was a standard break of the distal fibula. After 4 weeks, and an X-Ray, my doctor said I can walk on it, but I could not, I told them I needed help. I needed physical therapy for seven weeks and my achilles was very tight. I walked with crutches for slightly over 2 1/2 months. I finally moved to a cane and have been walking with no assistance since early June 2019. As of today 7/14/19, I am recovered with the exception of the RSD that I feel the pain moving in my foot, ankle, calf, sometimes its stiff, burning, stabbing pain as it moves around. The pain mgt doc feels I am well enough to not need meds and I am fine with that as I fight the last of the RSD. I also stopped the lumbar injections that I was receiving 1-2 times per week for a few months. There is also a psychological component to the syndrome based on past research that depression / anxiety can contribute to the syndrome. It was recommended to me to see a psychologist and discuss how to handle anxiety. I tried a few psychologists only to find out that they did not how to help me as the anxiety related to the syndrome because they did not know what it was, nor did they take the initiative to find out. I had to print a large description from a web page and they did not read it. Then they suggested I see a psychiatrist for meds. At that point, I stopped going as my husband and I did not see the benefit. On Facebook, I became a member of the Maryland RSD/CRPS Support. I have noticed so many inconsistencies in which specialists are needed: pain management, neurologists, and the specialist treating the limb or surgery. People are confused and don't know what to do when pain gets worse or what to expect physiologically to reduce their anxiety. In addition, those who need pain meds for the burning are finding themselves in the middle of the opoid crisis. I am thankful that I do not and hope to be out of this syndrome soon. I am back to the gym and back to my cardio kick boxing class again doing what I can to get my life back to normal. This syndrome cost us over 10K out of pocket even with good medical insurance. Lumbar injections costed 450 each time I got one. Then a few drug tests costs over 500 each time to make sure you are clean before they prescribe.
meds. This is a syndrome that, if caught early, can save a person a lot of pain and costs. Having a better care plan for patients would be so very helpful. The opportunity to raise awareness to RSD / CRPS will help to achieve that. I really appreciate your time in reading my story.