The Highs and Lows of CRPS
Written by Sandy Geddes for the RSDSA blog.
I turned 50 in January 2019. Fifty was supposed to be my year. I even did the SNL Sally O’Malley skit as a joke on my birthday. You know the one: “I like to kick & stretch & kick! I’m 50! Fifty years old!”
I set big goals for myself that year. The biggest one was to run the slalom waterski course which is very challenging. I trained and practiced so hard even though I had a broken toe! I just taped it up and got to it. My pain threshold was very high. My husband and I would drive eight hours to Orlando five times in one year so that I could train with a world champion coach. Why did I have this goal? Because I loved to slalom ski and loved the challenge. Shortly after my birthday, I spent two weeks windsurfing every day (yes with the broken toe taped up good) and going barefoot. By the time we returned home I could hardly walk. I scheduled my surgery and my life changed forever.
How and when did you develop CRPS/RSD?
In March 2019 I had surgery to repair my left foot. It involved removing a bone fragment at the metatarsal joint of my second toe, rebuilding and reattaching the ligament that tore when I broke the toe, doing a bone graft to fill the joint space to make it more stable and excision of a nerve that I had crushed. I knew something was wrong when I had so much burning pain and pressure in my cast. I could see that my toes were black & blue. The PA in charge of my post-surgical care was not concerned. I did not know what was normal since I had never experienced a major surgery before. By the time I was diagnosed two months after surgery, my lymphatic system was not working correctly, and I had lymphedema from my foot to the bottom of my shoulder blade on my left side.
What has daily life been like since your diagnosis?
Challenging with highs and lows. I spend a good portion of my day managing this disease so that I can live life on my terms. If I do something big like prepare for and host a dinner party, I know that I will suffer severely for a week following the event. Everyday I complete exercises like rebounding, calf raises, and desensitizing to help me throughout the day. I also do one on one restorative yoga twice a week and a Pilates reformer class twice a week. My OT does manual lymphatic drainage and myofascial release on my left lower quadrant twice a week. I have done many other therapies that have helped including chiropractic with Burleson Chiropractic and laser and hyperbaric oxygen therapy.
The only prescription I take is Cymbalta for neuropathy. I take vitamin C, magnesium and alpha-lipoic acid. I am working on improving my eating habits by avoiding inflammatory foods and loading up on anti-inflammatory ones. I had my first major setback a few weeks ago when I developed an ulcer in my mouth. My dentist chemically cauterized the ulcer and prescribed magic mouthwash to numb the area. By evening I was in more pain than I ever believed possible. I took hydrocodone for two weeks and that barely touched the pain. Neither my dentist nor the oral surgeon he sent me to understood the level of pain relative to the problem. Luckily my nervous system is starting to calm down.
What is one thing you wish those without CRPS/RSD could understand?
That even though I look physically fine and I am back to windsurfing and wakeboarding I still struggle every day with pain and swelling. That even though I do not always look swollen my nervous system still tells me that I am. That many days I feel like my hands and feet are inflated surgical gloves and that my fingers and toes want to shoot off like rockets. That most days it feels like I am standing on rocks or relief when it is only feeling like bunched up socks.
What advice would you give to newly diagnosed Warriors?
Find a physical therapist and an occupational therapist that understand how to help you. This has saved my life. I could not walk for three months after surgery. It took two months for me to be diagnosed because my post-surgical care was with the surgeon’s PA who did not take my concerns seriously. He said I was claustrophobic when I described the burning pain that felt like my cast was cutting through my leg. At my two month follow up, when I should have already been walking, I could see the concern on my surgeon’s face when he diagnosed me. He said get a good PT & OT close to home immediately. That was at the beginning of May 2019. Once I began PT, I started walking within a month. I was finally released from PT when they could no longer challenge me with what I could do physically. I started OT at the same time and still get treatment twice a week 10 months later and will continue for the foreseeable future.
I could not be as positive as I am today without stress management therapy. I found someone who is non-judgmental and compassionate to pour my heart out, cry, and laugh with. It helped that she is not personally invested in me. She was a stranger when I met her. She helped me set goals and meet them when I felt like I had zero control of my life. Due to my therapists and my perseverance I got my life back and felt sane again. After several months, my husband said Sandy was back. I could finally laugh again and focus on things besides my condition.
What advice would you give to Warriors who have had CRPS/RSD for many years?
Since I know it manifests differently in everyone, I do not judge anyone’s journey, but I do know that for me movement is the key to my successful management of this disease. Every day I push through the pain and swelling. I do whatever it takes each day to make it ease up even though I know it is temporary and I will have to get up the next day and the next to do it all over again. Try every therapy within your reach and do not give up!
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