Connie France is Still Here and Still Fighting CRPS
Written by Connie France for the RSDSA blog.
In 2016, my father was in his third stage of Alzheimer’s. He was coming out of a truck, but just a little too fast, and I went to grab him so he would not hit the concrete. At that moment I knew I had done something to my back. After getting the test results saying that I ruptured four discs in the lower part of my back, they started therapy and injection. Since nothing was helping after all failed attempts, my doctor said, “You are going to have to have surgery.” I was very reluctant to do the surgery, but he explained to me that it was a very simple procedure.On December 24th, 2016 I decided that Christmas was going to be a little different and I prayed for a Christmas miracle. I had back surgery that day, but it was short of a miracle. I returned to my room after surgery and I called for a nurse because I wanted to go to the bathroom. It was taking the nurses forever to come, so I decided that I was going to just get up and go, but when I tried to get up I went to the floor. I could not feel my left leg and partial right leg. The nurse came in and hollered for another nurse to help me get back into bed.
My nightmare started from there. For three months I was in a wheelchair and started using a walker. I took seven falls from just learning to use my legs, but I knew something was different as the pain was worse than the original pain as my daughter noticed my back was a reddish purple color. I was getting weaker, and I just did not understand what was going on. My doctor’s did more injections that were so unbearable and I finally said no more. My left leg started swelling and changing colors and in March of 2017 my spine doctor looked at my back and my leg. He left the room and came back in and said your have a disease called RSD/CRPS. He then gave me some information and told me to read it and for me to start looking for a pain doctor because he did not know enough about the disease to treat it. At that moment all I wanted to do was cry. He stated that there was no cure.
Connie’s daughter, Cylea, and granddaughter, Amorie
After doing the injections, even though I told them it was too much, they decided in July of 2017 to place a spinal cord stimulator in my back. It only gave me 50% relief. I of course wish it did more as my daughter spent every day and every night helping, pushing, and encouraging me by saying that every step is an improvement. My grandchildren helped me in ways that perhaps they may not understand, but just seeing their faces laughing and smiling brought joy back, even though they see that grandma was different and she does not run, dance, or go hiking. But I am still here and I will keep fighting until they find a cure.
This disease is life-changing, and without the support of family and friends, I am not sure the outcome of going through this alone. At one point I wanted to give up, but they were not going to let me. I am just limited on how much I do because of the pain.
What others need to know is that this is a secret disease that no one can understand unless you have it or a loved one that has it, because our pain is inside. Yes some days I may have someone come up and say to me, “you are having a bad day today I can see it in your face,” but it is really rare because we tend to wear a smile on our face regardless and behind closed doors we cry ourselves to sleep because we now have limited options with doctors not wanting to give pain medication.
I believe a lot of RSD patients are lacking the help we need to fight this horrible disease. Even though it has been two years and eight months, my life and everything I do has changed. My enjoyment is watching movies with my grandchildren and listening to music. I cannot go shopping like I used to due to the pain and it seems like the more pain I am in, the more the sweats come on.
Connie’s grandchildren Adrianna, Adrian, Rilynn, and Amorie
I still go to work daily, but it is such a huge battle to get up and get dressed. I still cannot feel most of my left leg and for the last seven months the pain has moved into my right leg. I have burning, throbbing, and sharp tingling pains so I use heat on my legs and put a fan pointing on the bottom of my feet due to the burning. I have to be careful with certain clothes as some material bothers my skin more than others and trying to put pants on by myself is a battle in itself because of the mobility that I have lost. Sometimes I still need help with daily things that I just cannot do, but I have not given up. I just wish doctors would take this disease more serious than they do.
For the Warriors who have had this longer than I have, all I can say is God bless you all and that I hope you have found great doctors with great help because just two years in, I cannot imagine five or ten years with this disease. You are the true troopers, because I know what my life is like and how much of my life has changed for me in such a short time.
I have found a pain doctor but he is still limited in what he does, so in some sense I am grateful, but then I wish he could do more and maybe someday doctors will understand that this disease is so hard to live with that there has to be more they can do. I want everyone who has this disease to rise up and fight so our voices can be heard and our pain can be felt and that others with or without will help find a cure so no others have to live with this horrible disease.
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I am so sorry for all the pain you are having. I had total knee replacement in 5/2004 and was diagnosed with CRPS in 8/2004. You are right, not many doctors know what CRPS is. I was lucky that my ortho doctor had seen it before, but they were not doing the stimulation at that time. I had the stimulator implanted in November 2008 and it changed my life. I still have pain but it helps me enough so I can have a life again.
Do you go back and have your stimulator adjusted? My therapy is doing yardwork and sometimes if I move wrong my stimulator will have to be readjusted or just over time with moving around I can tell I am not get the pain relief I should so I go get adjusted again.
You really need to find a pain doctor who knows how to treat CPRS. Usually a large hospital or teaching hospital.
Hope you can get the help you need, I will be praying for you.
Thanks for the advice, Catherine. We will make sure Connie receives your tips.
Connie France, I’m so sorry that you are battling this horrible disease. I’ve had RSD for 25 years and I’ve had my ups and downs and fought my battles. I haven’t given up and I won’t but I do get tired at times. I have RSD in my entire body. Like you I wish they would find a cure. The Neurologist that I have had since this started is retiring next year. That scsres me to death to have to start with another one. Keep fighting don’t let it beat you. I’ll keep you in my prayers.
We’re praying for you and for all of the Warriors out there, Jenny. <3