One Hour at a Time, One Day at a Time
Written by Kathleen Derby for the RSDSA blog.
How and when did you develop CRPS/RSD?
I was in a bad car accident in 1977, the year I graduated from high school. The following year, I had surgery on both of my feet. It was a bunionectomy on each foot. I was 19 and my doctor said I had the feet of a 40-year-old. I was admitted to the hospital and released in a few days. That was the beginning of my nightmare. It took me a very long time to heal from that surgery. It was a good year before I could even bend my big toes.
I had tremendous pain by the end of each day after work. No matter what type of shoes I wore, my feet were always in pain! Over the next several years, I felt so unhealthy. All my bloodwork came back fine, but I was always having pain. Over the next several years, I was tested for Lyme disease and Multiple sclerosis. I was falsely diagnosed with MS and put on some pretty harsh drugs. About 20 yrs ago, my toes started getting numb and tingling. I was then diagnosed with neuropathy, inflammatory arthritis, and Raynaud’s disease all in my feet and moving up my legs. Once my new podiatrist saw my feet, she said, “Wow! THAT IS CRPS!”
I had heard that acronym once before from a neuro spine surgeon when I told him of all my symptoms, but since that was the first and only time, I forgot about it until I heard it from my podiatrist. When I got home, I looked it up on Google. I was a textbook case. Why did it take 40 grueling years to get a correct diagnosis?
What has daily life been like since your diagnosis?
I suffer so much every day. I have not slept through the night for over a year. My feet throb with nerve pain and it is difficult to walk. During the night, my feet burn like fire. It hurts to rub lotion on them or wrap them in cold towels. My pain doctors have not helped, but made my journey worse because I get such anxiety when the sun goes down because I know another long night awaits me.
What is one thing you wish those without CRPS/RSD could understand?
Just because I get up and get dressed and put my makeup on, does not mean that I can keep up with all of my family and friends. My house will never be tidy again. I am no longer a gourmet cook and there are no more long hikes with my husband.
What advice would you give to newly diagnosed Warriors?
One hour at a time, one day at a time. Look for a support group to help you!
What advice would you give to Warriors who have had CRPS/RSD for many years?
It has been a humiliating and excruciatingly long 40 years. Doctors have diagnosed me with so many things such as fibromyalgia and MS. I definitely have overactive nerves and I look at my pain as a sort of prayer because I find it difficult to concentrate on prayer. Reach out to newly diagnosed patients to give them hope.
What activities or treatments have helped you find temporary or long term relief?
I am waiting for a pre-authorization from my insurance company for a sympathetic nerve block. I have had so many in the past, but this is supposed to be different. If this does not work, I will have a Spinal Stimulator put in.
Anything else you would like to add?
I just wish more doctors would be educated on this disease. The years and years of the unknown has taken such a toll on me and my family.
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