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A bold statement, but a much needed one.
August 2015, after another consultation, this time with a neurologist, who was conducting a ETS study to determine whether or not I had Wartenburg Syndrome in my wrist/forearm, the test was barely started, when he could visibly see the pain I was in. He stopped the tests, chatted with both my husband and I, and explained he knew the diagnosis. He said one word, well letters actually, CRPS, he then went on to explain that it meant Complex Regional Pain Syndrome. Before that it was Reflex Sympathetic Dystrophy Syndrome (RSDS) and before that Causalgia. It seems this is a condition of many names. I eagerly awaited for a cure but he shook his head and said there was no cure, that was not the answer I was wanting to hear.
You see I have been waiting for answers for almost 12 years after a motor vehicle accident, no-one could explain the pain I was experiencing, some just did not believe me, others just could not give me the answers I so desperately wanted to hear. In 2005 they settled on Active Myofacial Pain Syndrome (MPS), but my family doctor just did not feel that was the right fit. So that was what I believed I had.
Moving forward 3 years and I had a total dependency on prescribed narcotic pain medications, I had a cocktail of different medications but none of them were giving me any relief, so in late December 2007 I made the decision with the support of my family doctor, my friends and most especially my family to wean off all medications and to change to homeopathic remedies. So on January 8th 2008, was my first day with no prescribed medications, whew it was a scary, horrible experience, I weaned myself off so far then went cold turkey the rest of the way, it was a horrible experience one that I remember to this day. But that was my point. So I would remember what the effects were and so I would not go down that path again.
Move forward again to 2012, after a major move across Canada we went from British Columbia to Nova Scotia, it had come to the point where we were financially pushed to make another life changing decision this time to relocate to an area where we would be on a better standing financially, so Nova Scotia was to be our new adventure.
Sadly in 2013 I started experiencing more pain in my shoulder, actually it was in my shoulder blade I would get an extremely sharp pain then an electric current that would race down my spine and cross over running through my left hip into my left calf, my hip then could not support me so down I would go. This led to a visit to my family doctor, who had no answers but decided to send me to a Muscle Imbalance Clinic. Here was where questions become answers.
The Muscle Imbalance Clinic is run by a physiotherapist and a rheumatologist, together they found that the ligaments in my neck that held the top of the spine were not working effectively, and in turn was pinching a nerve that was causing the pain in my shoulder blade and the electric current running down my spine. A course of Prolotherapy was decided, and a small spine brace to help stop the spine twisting. A few very painful sessions began as I went through prolotherapy and taping the area afterwards to hold the ligaments and muscles in place. Slowly it was working my pain went from a seven to a 3 or a 4, we were finally making progress. No more shoulder brace instead a small spine brace, however nothing could be done for my right arm/hand I would continue to have extreme pain and lack of mobility. For the timing being.
Early 2015 my husband and I met with an orthopedic surgeon, who decided the problem with my wrist was not mechanical, so we were back to the drawing board, between my wrist and my hip, we were not getting answers but the pain continued, I could not understand my hip, also in early 2015 we decided to try a course of low dose methotrexate to bring my inflammatory markers down, and hopefully to help with the pain in my hip. It worked in reverse instead of helping it plummeted my white blood count, my platelets and rose my liver enzymes, it was immediately discontinued after 6 months.
We again were back to the drawing board. I was still attending physio for balancing the muscles and ligaments in my neck and hip. The prolotherapy had worked in my neck the pain had evened out to most days a 3 or 4. But my wrist/hand was a growing concern with most days the pain close to a 10, I had researched amputation however with the risk of phantom pain I decided against it.
Now we have caught up to August 2015, where I saw the neurologist with my diagnosis of CRPS.
After the diagnosis of CRPS, an MRI and a Cat scan was ordered for my left hip and on Christmas Eve I had the Cat scan. April 2016 I learned that I have CRPS in the ligaments that attach the IS joints to the sacrum, they have become too loose so the muscle has to do its own job and then the job of the ligaments which in turn forces the muscle to spasm, which in turn gives me excruciating groin pain, at the moment we are monitoring it, and again there is no cure. I am refusing a brace, knowing now that when I have a flare up, I will also have falls. Which could result in more serious complications such as a hip fracture.
To date I have CRPS in my neck, shoulder, right wrist/ hand, left hip and what they thought was reoccurring bouts of Costochondritis which is now CRPS in my chest cavity, the area between my ribs, which at times affects my lungs.
Despite this, I refuse to let CRPS define me, I was once an extremely active person, who loved to both downhill ski and cross country ski, rock climb, wind surf, kayak, hiked, biked, you name it I would love to try it, but slowly one by one the things I physically loved was taken away from me, I felt robbed as if my life suddenly had no meaning, I was angry upset and confused all rolled in one. I was not the type of person that sat around, I was not an indoor person, I loved the outdoors, I loved to be active in the world rather than being forced into my house and sedentary life style.
We lived by a lake at the bottom of a ski hill to me it was torture. In the summer I would watch my neighbours and those around me swimming, windsurfing, kayaking, doing everything I loved, while I sat on the dock in my lounge chair watching the world go by. It was so very difficult, but I have an amazing husband, who for my 40th birthday gave me a paddle boat, it was liberating having the freedom to enjoy some activity again, he further fitted it with an electric motor so when I got tired I could use the motor to put put back to shore, my kayaking days returned when we made a purchase of a Delta tandem kayak, he would paddle me around while I became the navigator and a one handed photographer with my little coolpix camera. In winter instead of skiing we purchased snowshoes and started going on small snowshoe hikes.
With our move to Nova Scotia even though there was more pain and the progression of CRPS, I with the help of my friends and family continue to kayak and a first for my husband and I, we had the opportunity to give ocean kayaking a try, which we love, we stay close to shore and we hope to purchase a kayak motor to help my husband, as paddling a tandem on your own is an extremely tiring exercise.
Also I had a bike specially fitted for my condition that has the gears and brake fitted on the left bike handle so we are enjoying small afternoon outings and seeing first hand the true beauty that Nova Scotia has to offer.
We have almost lived in Nova Scotia for 4 years, and we have already had to make many changes to accommodate life with CRPS. There are many more changes that are coming down the road to simplify life even more for me so I can take back up the challenge of living.
I do not know what my future with CRPS holds, but I know at times it is extremely scary, but I have learned to take each day as it comes, to pace my day, taking it slowly one step at a time, and if the pain gets too much calling it quits for that day.
Throughout this journey I have lost some very good friends along the way that have simply been unable to understand, that it was not in anyway their fault. However I have also managed to make a few new friends that understand and support me and my condition.
The one thing I know with CRPS is that there is no cure, it is degenerative, it is exhausting, and you have to learn to wear many different masks, you quickly learn how to make people comfortable around you, learning that even on your worst day when you want to amputate every affected limb or remove every affected organ you still smile and say I’m OK, or yes it’s a good day.
Do I have goals, yes a few I would still like to travel, buy an oceanfront home, there is something healing about the ocean. Oh and at the top of my list a saltwater hot tub as when I visit some lovely new friends, their hot tub works wonders for my affected regions and my pain, thank you both so very much.
To end this I would like to say I would not be able to walk this journey without an amazing husband who is always there for me no matter what, who thinks up ways for me to continue living life with CRPS. From an awesome hands free cross stitch frame that makes those pain filled days less of a bore, to a tandem kayak so I can see the beauty of Nova Scotia. He has always had another idea to try and bring back the life I used to live, even though we know that life is gone and each step is the beginning of a new life, and not letting my condition define me, I love him so very much, he is my soul mate.
To both my boys, and my future daughter in law, who has named my unique way of pronouncing words (when my words get muddled) as “Anglish”, this issue being a side effect of the medications I once was on unfortunately. Whose humor and lightness bring joy to my life.
To my family and friends who try to help and support when they can.
To my new and quite knowledgeable family doctor, an amazing naturopath and physiotherapist who without the new ideas she is coming up with to help me live with my condition I wouldn’t be where I am at.
Without you all, I would be lost and so alone, you make living worthwhile.
Thank you, and thank you to everyone else that I have met on this new path life has chosen for me to walk.
To share your CRPS story as Anjay has done, is a hard thing to do as you are re-living your journey over again. Some people find sharing their stories helps them learn to cope and accept their condition.
If you would like to share your story, then please check out our ‘Share Your Personal CRPS Story’ article to find out how you can send us your journey affected by Complex Regional Pain Syndrome. We are looking to share CRPS stories from patients, loved ones, family members and carers, because everyone is affected by CRPS just in different ways.
Written: 13/05/2016
Last Updated: 28/04/2020