Written by Patti Sauer for the RSDSA blog.
Between April and August other issues started to arise that I did not understand: pain traveling to other areas, bladder and urinary tract issues, cognitive issues, vision issues, excessive sweating just getting out of bed or showering, excessive fatigue, and pain so bad that normal daily functioning was next to impossible. The list went on and on. I really could not understand what was happening. There was a fear of infection because of the edema in the bone marrow and the break not healing, and an entire team of doctors and specialists trying to make sense of it all and deciding on a plan of action.
After several tests to make sure there was no blood infection, clots, etc., it was determined that I had developed Chronic Regional Pain Syndrome (CRPS). It was a devastating diagnosis and one that could have been avoided had I not been turned away over and over again by a doctor who accused me of just wanting pain medication. Not once did I ever ask for medication. In fact, I explained that I was a teacher and could not take any narcotics. I asked multiple times if he would order an MRI, but because the x-rays had not shown anything, he kept turning me away. At one point he even said to me, “If you can’t tell me what you did, then I can’t help you.” I had not done anything that I could remember. In fact, very early on I attributed the pain to shin splits.
Unfortunately, it became much much worse. Daily life was very difficult in the beginning. My husband is in the military and travels often for his job, so much of the time I was at home alone, wheelchair bound. One of our sons was away at college and the other son was finishing his senior year in high school, so additional help was difficult to find. Our extended family lives several thousand miles away, so even that was not an option. Financially, things were becoming more and more difficult, and we were quickly going through what little savings we had. In addition, the specialist that was available to us was nearly an hour drive away. Riding in a car was excruciating and, quite honestly, so exhausting. We began trying injections into the spinal column and I had to go through cognitive therapy to help with the memory loss and brain fog.
As a teacher, this was devastating. I was afraid I would not be able to work again. I could not remember what I had even taught two months prior, much less remember what I did the day before. I began physical therapy and aqua therapy that fall, but was still having difficulty managing the pain and swelling. Things just did not feel like they were getting better. About this time, I started having uncontrollable leg tremors. I felt like I was going crazy. I could not control my own body and still had this indescribable pain. After several more attempts at injections to help with the pain, and increase in medications, I just could not take it anymore. I felt hopeless and begged that there must be something else. My specialist and I decided that the next step would be DRG Stimulation. I was scared and a little apprehensive about how the procedure would work, but was willing to give it a try if I could get any relief. I had my stimulator surgery in April 2019.
While the recovery was a bit difficult, I am happy to say that things are going pretty well. I am able to manage the pain without using the narcotic medications that were prescribed. It has been an adjustment trying to find that “sweet spot” for relief, but I am able to function better on a daily basis. Do I still have pain? Yes, but being able to manage on my own is a blessing.
For those who do not have CRPS/RSD, the one thing I wish you understood is that the pain is very real. Please be supportive and encouraging to your loved ones. This is not only physically debilitating, but it is mentally and emotionally debilitating. We cannot explain to you what is happening inside our bodies. And, please do not make comparisons, or tell us to take some Tylenol, or tell us to see another doctor. We are fighting harder and advocating more than you will ever understand. So, please, just be by our side.
For those Warriors like me, please don’t give up. Keep fighting, keep spreading awareness, and be gentle with yourself. It’s okay to be mad, and frustrated and hopeless, but just don’t stay in that place. Advocate for yourself, and continue to fight for answers and for help for the medical community. If you can’t fight for yourself, make sure you have a trusted family member who will fight for you. You can do this!
This Fall I returned to the classroom teaching 7th grade Language Arts in a small country town. I feel so blessed to be able to have my life back on track. I am one of the lucky ones who was diagnosed early. I can only hope and pray that I have a long time before this horrible disease spreads. In the meantime, I will continue to have Hope and Fight and be a Warrior for myself , my family, and for those like me.
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