Written by Jacque Neff for the RSDSA blog.
I joined the Army 25 years ago to follow in the footsteps of my family and work to become an officer. I thought I had an idea of what battles laid before me, but little did I know that I was at the beginning of a lifelong battle that would forever change my life.
While running during a physical endurance test, I felt and heard something in my left knee pop. I stumbled and the Captain told me not to “fall out.” I pushed on and finished in good time. A month later I was discharged with 10% disability and a diagnosis of tendonitis.
The pain continued way past when it should have and increased with each passing year. I kept going to the VA trying to find out what was wrong, but every test showed normal. They started to treat my like I was making it up.
Long story short, after 21 years of nothing, I demanded to see orthopedics again. I told them I was not leaving until I did. During the exam, she tried to test the reflexes in my knees. At this point they were both bad and I cried and begged her not to. She said she had only seen that one other time and sent me to pain management where I was diagnosed with CRPS type 1.
As a nurse, I had never heard of it, and was so relieved to finally have validation. Unfortunately, I had progressed so far in the disease that she jumped straight to a spinal cord stimulator for relief stating that she feared not much else would help. She was right. Nothing has helped me at all or for only very short periods of time. I am currently unmedicated.
At first I could still function decently. The pain was there, but I pushed through it. Each year brought different challenges. However, I started declining rapidly in 2015.
I now have CRPS from the waist down, starting in both arms and have lots of issues with digestion, including my bowel and bladder. It spread like wildfire after my spinal cord stimulator implant.
I have trouble with all activities of daily living. I am 45 and use a walker, but only because I refuse to be wheelchair bound yet. I can no longer clean my house or do most things I liked to do. I was an outdoor person.
What hurts the most is that I have lost a lot of family and friends because they do not understand just how bad CRPS is. I wish they could see that this is not the stuff they are used to. That there is no cure and I am not going to be better tomorrow. I wish they could understand that my once spotless house is a mess because I can only do something for five minutes and take breaks for hours. I am not lazy, I just hurt!
My advice to all warriors is to be your own advocate. If a doctor is not listening, make them listen or find one that will. Make yourself heard. We are the only ones who know our body! If you are new to this diagnosis, research will be your friend as well as joining support groups for this. I say this because it is a complex disease with many symptoms and a lot of doctors have no clue what it is. They will try to fake their way through it rather than educate themselves. This can lead to more problems. Trust me, I have been through it.
For those who have lived with this for years, I hope that you have found treatments that work. If not, keep fighting. I still read medical journals and they are making advancements with chronic pain all the time. It is hard, I know, but there is always a reason to keep fighting. Oh and just because a treatment works for one person, does not mean it will work for you. We have to find out what works for us. Unfortunately for me, right now Percocet is the only thing that helps me out of bed and because of the crisis, no one will prescribe it for me.
Pain psychology classes do help. I have taken a couple. They teach coping strategies and techniques to help lower pain. I use distraction the most. I miss all the outdoor activities, but discovered I can draw. I also crochet and play video games. Breathing is an absolute must. Learn breathing exercises to help get you through bad moments.
I pray for us all every night. I may not know you or have never met you, but I pray for you. After all, we are brothers and sisters in pain. We are WARRIORS.
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