Hit The Ground Running With Everything You Have
Written by Teryl Worster for the RSDSA blog.
How and when did you develop CRPS/RSD?
On June 4, 2020 I sustained a fractured bone in my right hand from a kick from my horse.
What has daily life been like since your diagnosis?
I had never had a broken bone in the 54 years of my life and I was very active, so I was not sure what to expect. Things went fairly well at the onset as I have a high tolerance for pain and was a certified personal trainer, so I felt that I could bounce back relatively quickly. I also own and operate a wellness spa, so I felt that I had all I needed at my disposal. This turned out to be a godsend because as the next few months played out, I found that my hand had become unusually immobile post incident. My right hand was very swollen when the cast came off, there was a burning pain, and the color of my entire right arm was very different from my left.
I immediately started physical therapy and added a variety of treatments. I used far/near infrared light, PEMFT (Pulse Electromagnetic Field Therapy) as it was good for microcirculation. I had no idea what was wrong but began working hard to decrease the pain and inflammation. I used homeopathic pain management products, massage therapy, and acupuncture, yet still the hand was not getting better. This did not make sense to me as I understand much of the science behind inflammation.
My right hand was very sensitive to touch, and the skin discoloration and edema were beyond what was normal after several weeks of PT. My surgeon offered to give me a cortisone shot in my wrist due to the pain and immobility. This was the most pain I had felt up to that time. He also put me on a prednisone pack.
By August, I was still unable to really use my right hand and I was not sleeping well at night due to the pain. I continued to do therapy at home, ice baths (ouch) warm magnesium soaks, etc. It was a full- time job and I was also trying to run a business. I finally insisted that this was “not normal” and looked closely at the new x-rays in August showing a very different looking hand as far as the bones were concerned. My doctor shockingly said how sorry he was and that he sees now it is “classic signs of CRPS.” I had never heard of this but he felt that I was in a good place with all the therapies I was utilizing. He felt that I had made such good progress that he felt I may have already put it into remission. The next step was a stellate ganglion block with a pain management specialist. These shots compiled with the therapies I was already doing have given me hope and have allowed me to gain function and to decrease pain to a very manageable level. I also added ozone therapy and hyperbaric chamber therapy as I did not want to leave a single option behind.
The second battle I fought and won was against the insurance company. They denied several times payment of the nerve blocks, the very procedure that with the other therapies will, according to my doctor, leave me with a normal hand within the next several months.
What is one thing you wish those without CRPS/RSD could understand?
This disorder affects not just the physical body, but the psyche of the individual dealing with it. It is debilitating and causes multiple layers of dysfunction beyond just the pain.
What advice would you give to newly diagnosed Warriors?
When you are newly diagnosed, you need to hit the ground running with everything you have. Time is of the essence with this disorder and science has not quite caught up with this disease. Be your own advocate and find multiple ways to treat this including natural therapies such as acupuncture, ozone therapy, hyperbaric therapy, and massage therapy, when tolerated, as it will work if caught early. Do not give up and be diligent to do all the homework necessary.
What encouragement would you give to Warriors who have had CRPS/RSD for many years?
If this has become a chronic issue for you, you must find natural ways to manage the symptoms. I practice daily Sudarshan Criya breathwork as it calms the nervous system and helps you to get your mental state grounded. Yoga, movement, homeopathic pain management all will allow you to be the captain of the ship and take control back over your body. Your body is a miracle and when you give it the right environment, it can heal itself. Also watch the foods you eat. I did notice quickly that certain foods flared the pain more than others. Try to go on an anti-inflammation diet if you can.
What activities or treatments have helped you find temporary or long term relief?
Acupuncture, physical therapy, ozone therapy, hyperbaric chamber therapy, yoga, cardio, strength training and working diligently with my farm animals all have helped me progress in my healing.
Anything else you would like to add?
Make sure to monitor your “self talk”. I had no idea that I had developed a nervous system disorder, so I started to feel over time that I was “weak” or my body was “less than”. I did all I could to stay positive around that and decided to just make jokes and try to see a positive outcome. I never allowed myself to succumb to the internal conversation of “Why am I not healing when other people heal quicker from this type of injury?” My ego was bruised until my orthopedic surgeon eventually confided in me how amazed he was at not only my progress, but my overall attitude towards what I was dealing with. He feels it is in part contributing to my ability to beat this and put it into full remission. It may be a year after the original trauma that I will regain full use of my right hand without pain, according to him, but I see this as good news. There is a light at the end of the tunnel, and if my knuckles do not go back to their pre-injury size, then there are jewelers who can fix all my rings that are just waiting to be worn once again. We can do anything as human beings we want to, we just have to believe.
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Ms Worster, I have a similar story. My surgery for my broken ankle was on November 5, it was around December 18 that I was officially diagnosed. I hammered the doctor with very detailed description Of my pain over and over again. I believe he thought I want it more pills at first, and I did, but it was when I really started citing my symptoms and the journals of medicine That he stated he would refer me to a neurologist who diagnosed me. I was initially discouraged by friends and anyone to stop looking at the Internet and trying to diagnose myself. It was this research that helped me to identify what was going on at a very early stage. At first I only thought it was the natural healing part of breaking a bone as it has never before happened to me. We are taking an aggressive approach, I had a steroid shot, now and I am going to have a peripheral nerve stimulator implanted. I have personally gone through additional steps of icing, Which helps tremendously and Alleviate the need for medicine, mirror therapy which has a really short term improvement, And hopefully some long-term results as well. A massage my foot all the time for circulation, I’ve purchased all kinds of devices to help, and now I’m trying CBD oil. I have dedicated time in space for my healing. Right now I’m trying to understand the cytokine release and any possible help from the covid vaccine. I agree it is up to us to be our own advocate as there is not much light on this disease. I was having a bit of a bad day and feeling sorry for myself. Then I read your article, held my Billie (3 year old pit bull) tight, And pulled myself up by the bootstraps.
My heart and prayers go out to you. It is unacceptable that you or anyone has to live their lives in pain. My hope is that the more we discuss this the veil will thin and reveal to our society what folks are dealing with. I find that if we reveal more information around successes with natural therapies coinciding with PT, maybe one day insurance companies will cover them. The hyperbaric chamber has been amazing as well as the ozone therapy. I still struggle with some extreme stiffness and immobility of my right hand but I believe it is definitely getting better. I know that in time, if we make a little noise we can gain some further support for this horrible disorder. My child survived leukemia and a stroke at 18 years old, it was unexpected due to her extreme numbers, BUT she survived and against the odds is due to have her first child 10 years later. Feel free to reach out if you have any questions around the alternative therapies. Much love- Teryl Worster
My heart and prayers go out to you. It is unacceptable that you or anyone have to live their lives in pain. My hope is that the more we discuss this the veil will thin and reveal to our society what folks are dealing with. I find that if we reveal more information around successes with natural therapies coinciding with PT, maybe one day insurance companies will cover them. The hyperbaric chamber has been amazing as well as the ozone therapy. I still struggle with some extreme stiffness and immobility of my right hand but I believe it is definitely getting better. I know that in time, if we make a little noise we can gain some further support for this horrible disorder. My child survived leukemia and a stroke at 18 years old, it was unexpected due to her extreme numbers, BUT she survived and against the odds is due to have her first child 10 years later. Feel free to reach out if you have any questions around the alternative therapies. Much love- Teryl Worster
Dear Teryl, I am so sorry that you have CRPS, but very lucky at the same time that you were diagnosed at very early stage of your injury. Not everybody is as lucky as you are. For us older folks that were not diagnosed for years and left us with this unbearable pain and not much to do to control our pain. I have CRPS for the past 36 years in my left foot and leg. As you, I worked and tried to overcome the pain with whatever was available at the time, with less or no success.
I am glad and so thankful to RSDA folks and Dr. Jim Broach who hosts webinars or zoom meeting with professional who are providin us the latest news and new approaches as how to mange our pain and stay abreast of new developments in this unknown desease with no one fix for all.
I wish you a full recovery and admire you for not allowing this desease to bring you down. Be strong and positive for all of us that are suffering for years.