Podcasts, Pools, and Patience – Melissa’s CRPS Journey
Written for the RSDSA blog by Melissa Adams
How and when did you develop CRPS/RSD?
I had an Achilles surgery in May 2016. Shortly after the surgery I had a HUGE fall. The pain was so severe and different from the surgery pain. I kept complaining about it, but was told it was all in the healing. However, I knew something was wrong. So finally, after a year of speaking my truth, I received new X-rays and had an MRI that showed my “new” Achilles was torn and my heel had four hairline fractures. The doctor wanted to wait to see if the pain would relieve itself. It did not, so I had another surgery in September 2017. I was still having pain that I have never experienced in my life. I fought with doctors for another year. Luckily, I began working with a new physical therapist who listened and saw signs of CRPS.
She contacted my doctor about sending me to a specialist for CRPS, and wouldn’t you know… finally a doctor listened, and I was officially diagnosed with Complex Regional Pain Syndrome (CRPS) in April 2018.
What has daily life been like since your diagnosis?
Life has definitely been different and sometimes even really hard. Trying to figure out the “new” me is a challenge every single day. I was such an active person as I was out in the community, a caregiver, and a starting a “party” anywhere kind of person. There are so many things that I miss like skating with my derby girls, having a day on the boat that is full of laughter, fun with friends + family on the lake, WALKING on the beach + enjoying the sun, and volunteering! I could just keep going, but it is the “simple” things of everyday life that really get me down.
I want to be the caregiver and it is so hard for me to be that person. Tasks like cleaning the house, sweeping, cleaning the tub, dusting, cooking, baking, etc. are now difficult. I am also unable to work which I do miss as I really loved my job. I also miss just taking simple walks. I want to be able to go grab a gallon of milk for my family or even drive to get the milk. Because I am not able to do so many things it really makes me go into a deep depression.
I try to keep a smile on my face, but some days are harder than others. I think of the good that I have such as an amazing husband that stands by my side, two loving kids, family, and friends that love and care for me.
What is one thing you wish those without CRPS/RSD could understand?
That even when I am smiling, I am in pain. Plus, when I cancel and I am not able to get out or visit you, please do not take it personally. I want to be there, but CRPS just won that day. ☹
What advice would you give to newly diagnosed Warriors?
Have patience and reach out to other Warriors for support so that you do not feel alone. Having those Warriors by your side and the understanding of what you are going through is such a great help.
What encouragement would you give to Warriors who have had CRPS/RSD for many years?
Find that special something that makes you feel more “normal.” I am still finding new things to help me feel this way. Some of the things I do is take care of my plants and my sweet puppies. I also try to make breakfast every Sunday and spend quality time with my family instead of having to always be in a rush and let life speed by.
One thing that I really enjoy doing is my podcast, “CR(a)PS A Day In A Life With A Woman With CRPS.” Informing others on what it is like to have CRPS and to hear from fellow Warriors has really filled a void. Every week my brother and I put out a new episode. We complete research to find information to give us new knowledge and to share. One GREAT site is rsds.insctest1.com. Their site has helped me in so many ways. I have even been to a couple of their events which are so informative!
What activities or treatments have helped you find temporary or long-term relief? Working with my doctors and adjusting my medication when needed has helped me a lot. I also really enjoy water exercise. Being in the water (not a shower, that is a story of its own) helps take that weight off of me and I can complete my physical therapy easier. There are some days, unfortunately, that even the water is not agreeing with me. The sensitivity is so severe.
Another thing that really helps me is writing in my journal. Sometimes I need to really let some feelings out and I do not want to talk to my love ones about it (at least not right at that moment). Taking those words and writing them down releases so much weight.
I think the best thing you can do is listen to your body. Stop when you need to stop and rest when you need to rest.
Of course the love and support I receive from my family, friends, and caregivers is truly something you cannot replace. They make my days easier to deal with and remind me that I am loved, needed, beautiful, and a CRPS Warrior!
Anything else you would like to add?
It is okay to cry, scream, and get mad, but try to remember that you are not alone! Try your hardest to pull yourself out of it and reach out to those around you who understand and love you.
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