My Story: A CRPS Journey of Hopes and Dreams

My Story: A CRPS Journey of Hopes and Dreams

In early 2012, I was in my final semester of law school and things were going well for me. I had a great group of friends, I exercised regularly, I belonged to a student club that I found both enjoyable and meaningful, and I had a job lined up for after graduation. On a grad trip in Cuba, I noticed that the chronic hip pain I’d been dealing with for the previous two years, which had mysteriously appeared after running on the treadmill one day, was worsening. How could that be?

Thus began a relentless search for the cause of the worsening hip pain. The doctors I consulted in search of a solution were stumped because they couldn’t find anything wrong on the imaging.  The pain continued to intensify. I felt so alone and I was very afraid. After a year and a half of fervently searching for help from a plethora of healthcare providers, I was diagnosed with CRPS (Complex Regional Pain Syndrome). “Okay,” I told myself, “now that I have a diagnosis, I can treat the specific disease, heal, and move on with my life.” Little did I know, I had a very long, arduous road ahead of me.

Rachael Caplan

Fast forward to March, 2019, when I spent one month in hospital and began taking Duloxetine. During this time, I was fortunate to work with a wonderful team of doctors and nurses, as well as an outstanding occupational therapist. I returned home from the hospital feeling better than I had in years. I returned home with hope for the future. “I know I can do this,” I said to myself, “I’m brave and I’m strong.”

At the beginning of May, I started using Curable (link: curablehealth.com), an online program based on neuroplasticity and mind-body syndrome techniques. Curable consists of four main categories: education, brain training, meditation, and writing exercises. The program, which can be done from the comfort of your own home, is designed specifically to help people with chronic pain. I was already well-versed in the science of neuroplasticity and chronic pain, after having read many books on these subjects, and so I jumped into the Curable exercises with gusto.

I’m so pleased to share with you all that I began seeing noticeable improvements within the first week of using Curable. My confidence grew as I was able to do more and more things that I hadn’t done in years. Now it’s been three and a half months of using the program diligently, and I’m so grateful that this summer I’ve done things I’d been dreaming of doing for years. Since starting my Curable journey, I’ve driven around the block, hosted my 32nd birthday party, attended a dear friend’s wedding, gone out dancing, walked around downtown, practiced yoga poses, played at the park, cooked delicious and nutritious meals, enjoyed live music and much more. Life has been pretty sweet.

Additionally, I’ve had several Skype sessions with an amazing therapist from the Pain Psychology Center (link: http://www.painpsychologycenter.com). It’s so incredibly refreshing to work with a therapist who wholeheartedly believes that I can decrease, and perhaps eventually eliminate, the pain. I’m so happy to announce that the pain has decreased and I’m able to spend more and more time out of bed and participate in more and more activities. I’m filled with hopes and dreams for the future and I’ve learned to sit back, enjoy the journey, and find things to be grateful for each and every day. My quality of life has improved drastically, and I look forward to the future, while trying to fully appreciate the present and how far I’ve come.

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Authored by: Rachael Caplan

Rachael Caplan lives in Toronto with her mom, her dad, and Rigby, the feisty family cat. Rachael was diagnosed with CRPS in 2013, a few days before her 26th birthday. She plans to return to school soon to study holistic nutrition. She enjoys listening to music, spending time outdoors, and exploring the city.

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Hi Amy, thanks so much for your message and suggestions! I’m very happy to hear that you’re doing well and have HOPE. I use the Insight Timer app for meditations. They have over 20,000 free meditations and they’re amazing. Feel free to join my Facebook group CRPS Buddies. It’s an optimistic, solution-focused group 😊

Amy E Vogel

Rachael, thank you for a positive story of hope. I too have CRPS, diagnosed in 2016. It’s a moody, shifting, frustrating, and unpredictable condition! But I as well have gotten better and have hope for a future.
I wanted to share that weekly massage by a therapist qualified in injury massage has helped me greatly, along with essential oils and cbd oil. Also, I use a different meditation app that’s much cheaper. I believe a limited version is even free. Check out RelaxMelodies.com. I’m sure you’ve had issues sleeping due to the pain. This app has taught me to calm the fear and my mind, allowing me to relax and sleep soundly for the first time in three years.
Best wishes to you on your journey.

Randy

Law school, to holistic guru. Living at home 26 or 32 years old. Transendental meditation writting and whatever. Is a long long was from being cured or adequately treated. But if you think this is a cictory. Then more power to you. What may work for one doesn’t work for others.

ElizabethR

I’m happy that this approach is working for you. You are far too young to spend a lifetime in pain, and I hope your path is effective for others as well, I’m old now and have several degenerative conditions that are not likely to improve. I’m neither brave nor strong anymore, but many others are and I truly hope they are helped.

Another commonly-missed diagnosis that can be confused with CRPS is a nerve pinch in the Cauda Equina, the bundle of nerves that fan out like the tail of a horse, from the lower vertebrae into the lower body. The Province of Ontario has an elevated incidence of this disorder because the correct diagnostic protocol is to examine the lower spine by MRI within minutes after symptoms first develop, identify which nerve is pinched, and then correct the problem with surgery to relieve the pressure on the nerve. Ontario often imposes a 6-week wait for MRI tests, meaning that people who don’t get an emergency MRI, suffer permanent nerve damage for lack of timely corrective surgery. Some Ontario physicians seeking to end this foolishness have begun parroting US-derived anti-opioid propaganda, in hopes of frightening Members of Provincial Parliament into authorizing more funding for MRI testing, as healthcare administrators have advised emergency physicians there to discharge patients on pain medication and wait 6 weeks for the MRI test, in hopes that the condition might get better on it’s own and the MRI test can be avoided entirely.

In the US an equally-absurd problem impacts people with this type of injury: If the hospital to which they are sent, actually owns an MRI machine, that hospital is more likely to perform the test to identify patients who need corrective surgery, than a hospital which does not own one. The reason for this, is that when the patient is transferred from an ill-equipped hospital to one better-equipped, the ill-equipped hospital is paid a great deal less money from third-party payers such as the Government and private health insurers. Raising awareness of the importance of proper diagnostic equipment is essential, for both our countries to overcome this problem.

Rachael

Debra Johnson, thanks so much for your suggestion of the FAI. How do they test for that? Would it be an MRI with contrast? I’m happy to hear that you found out what was wrong and that you don’t have CRPS. Were you able to treat the FAI? Hope you’re having a lovely day 🌻

Rachael

Michael Kaster, thank you for your kind and encouraging post. I just want to clarify that Curable is $300 for a lifetime membership and significantly less for a yearly membership. There’s also the option of paying per month. I think they really want to make it accessible to as many people as possible. Glad you’re looking into it. Wishing you all the best and happy healing!

Debra Johnson

Rachael, Since you have seen so many medical professionals I’m guessing that someone looked into the possibility of you having FAI (femoroacetabular impingement syndrome) with or without a labral tear. It is difficult and often misdiagnosed and I know several people (myself included) who were told they had CRPS. Wishing you the best on your healing journey.

Michael Kastner

Thanks Rachel for your uplifting story, something not often heard here. So happy for you and your tremendous strides. And thank you for sharing the links to cureablehealth.com, and to pain psychologycenter.com. I have briefly started reviewing the first program which appears hopeful, certainly educational, and brings light to the subject that pain is perceived and suffered differently by each of us, sometimes perhaps even more easy to endure with the newest progressive scientific facts shared and encouraged by this program. $300 per year for a home based Pain Program available to us 24/7 which offers some great new thoughts and therapies which certainly may help some Chronic Pain Patients gain better control on their individual problems letting them learn new processes which will help some folks to get on a trajectory towards better pain control. (I am starting to sound like s commercial for them!).
Yet indeed that program and so many others are using the latest fact based science that pain is not only physical but also that psychological and environmental conditions effect us greatly and must be dealt with in hopes to get any better.
Mind, body, soul and environment all play a huge role in how we each differently feel and deal with our individual pains. These findings and our own involvement in working through and with all of these hopefully may help us each get better control of our pain.
This program and other online and community based programs and those starting to be offered by the Medical Community indeed greatly impact our entire relationship with our pain, often helping some of us even show great improvement like yourself.
It takes so much work to get through each and every day living with Chronic Pain of any kind and if we put some of that work in learning new ways to live better and hopes to find some relief.
SOUNDS GREAT, and absolutely these newer programs will help some not only find some relief as you did but indeed get better.