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It’s Challenging to Concentrate When Your Brain Is Always Signaling Your Body’s on Fire

Written by Pain Coach + Chaplain Bonnie Lester, MA for the RSDSA blog.

How and when did you develop CRPS/RSD?

I developed CRPS in 1986 in my left dominant hand and left shoulder after my car was hit by a speeding drunk driver. Two years later in 1988 I underwent a left cervical sympathectomy after repeated stellate ganglion blocks failed to bring extended relief. The surgery spread CRPS from the left side of my neck down to my left foot and left me with a useless dominant hand.

What has daily life been like since your diagnosis?

Since I was diagnosed 38 years ago I have learned the importance of incorporating self-care into my life in conjunction with the treatments suggested over the years by my health care providers. Though I achieved remission 30 years after my diagnosis and have been pain free for nine years now, I raised my son and lived through a divorce and remarriage during the years I lived with high levels of burning pain. I survived three decades of CRPS by following a disciplined approach of taking an active role to incorporate comforting activities in my day. This ranged from using a TENS unit, using mindfulness strategies, challenging my negative thoughts, and listening to soothing and uplifting music throughout the day.

What is one thing you wish those without CRPS/RSD could understand?

Some things I’d like others without CRPS/RSD to understand is that it’s challenging to concentrate when your brain is always signaling your body’s on fire. I’d also like them to understand that it’s more helpful to ask, “Can I help you in any way?” rather than saying “I’m sorry you’re in so much pain.”

What advice would you give to newly diagnosed Warriors?

Science has made great advancements since I was diagnosed in 1986. Today there are a wide array of options to address persistent pain and the earlier a person is diagnosed with CRPS and begins treatment the better the outcome. It’s essential for you to learn basic pain education to understand what is known about CRPS at this time as well as learn how persistent/chronic pain is different from acute pain. Science says an optimal outcome in dealing with persistent pain can be achieved using the mind/body approach which includes incorporating healthy lifestyle behaviors such as movement, nutrition, stress management, achieving a restorative sleep, and maintaining positive social connections.

What encouragement would you give to Warriors who have had CRPS/RSD for many years?

I am now in remission after living with CRPS for thirty years. Remission is possible regardless of the length of time the condition has existed.

What activities or treatments have helped you find temporary or long term relief?

I understand each of us are unique and our experiences with the same treatments may have different outcomes.

What I found most useful:

TENS unit and Soma, a muscle relaxant.

The many different antidepressants and anti-inflammatories I was prescribed barely dialed down the pain. I couldn’t tolerate Neurontin, a commonly prescribed medication for CRPS. I used Fentanyl and Norco for nine years but it didn’t reduce my burning pain. I achieved remission after I learned about neuroplasticity in 2010 and decided to incorporate neuroplasticity exercises into my life.

I used sensory stimulation activities that I created on my own and achieved a pain-free life. I tapered off of all my pain related medications and now live an active life at the age of seventy-one.

Since I achieved remission and regained the use of my hands I’ve entered the cyber world and discovered neuroplasticity is now the basis of some CRPS treatments. One such treatment is guided motor imagery (GMI) that some physical therapists and occupational therapists are using with their CRPS patients.

Anything else you would like to add?

In 2021 my educational and inspirational Instagram account attracted an invitation to appear on a podcast interview. During the interview the host encouraged me to author a book about my miraculous recovery and my affordable and accessible strategies for pain management. While I researched the world of apps to include in the resources section of my book I discovered TrainPain, an app based on neuroplasticity science. This mindfulness app integrates physical sensations with game-based training.

After meeting with the founder of TrainPain I was invited to partner with TrainPain to present free patient education workshops for newly diagnosed CRPS patients.

Here’s how to connect with me:

Email: [email protected]

Instagram: @bonbonlester

Website: BonnieLester.com

On my website you can sign up to receive my newsletter that provides science-based information and free PDF’s with strategies to feel better now. 

I Have Hope That I Can Be a Light in the Darkness

Written by Patty S. for the RSDSA blog.

This past April, I celebrated my 30th year of having CRPS and only having the diagnosis 28 years. Where does the time go when one is having so much fun?

In 1993, I was the middle car in a three-car accident. I hurt my neck and back. It took a long time to get better. Yet something strange happened to my right arm – it would swell up, turn red, and burn, then change to blue, feel cold, and still burn. I saw 20 doctors over two years, and nobody could figure it out. They finally said I might have Reflex Sympathetic Dystrophy (RSD), now called Complex Regional Pain Syndrome (CRPS), a rare illness with no cure. They told me to get used to the pain, because I would have to live with it forever.

I went to a psychologist for psychological testing. He knew about CRPS and suggested I see Dr. Kirkpatrick in Tampa. By the time I saw Dr. Kirkpatrick, my right arm was so sensitive I couldn’t touch it, and each finger was almost three inches wide. Dr. Kirkpatrick had a plan to help me get better. He gave me 50 articles to read about CRPS.

The doctor’s treatment plan started with six blocks on my ganglionic nerves twice a week. It worked, and I got a confirmed diagnosis of CRPS with some hope. I had many more rounds of blocks, and I even had surgery to remove part of my sympathetic nerves. I thought I was cured and went back to work part-time. But every six months, I had to get more blocks because the pain came back.

In the following five years, I had two more car accidents, and the CRPS spread to my left foot, hip, face, head, and whole left arm. I had almost 100 blocks in a year, plus many other treatments like hypnosis, TENS unit therapy, water therapy, physical thearpy, and more. I even tried something called the “burnout method” that hurt so bad it made me pass out, but it didn’t work.

In 2008, my right arm and left leg got much colder than the other side. More blocks and ketamine were added, and I learned how to do biofeedback. But my regular doctor couldn’t help anymore, and in 2010, new doctors said I needed on disability. That’s when I lost hope, lost friends, and couldn’t go to the beach. I had ketamine infusions, more blocks, and “The Suicide Disease” took over. I lost hope yet had to be the caregiver of the family.

By September 2022, I had reached my end. I felt isolated. Stiffness and swelling made me fall and suicide was all I thought about. I lost all hope. I hadn’t smiled or laughed for years.

Then I was asked to try out a program called Override, in March 2023. One of the pain coaches, Brenda, called me and told me about Override’s virtual Comprehensive Pain Program that might help. It involved seeing a team of pain specialists including a pain physician, psychologist, physical therapist and health coach that all actually worked together on the same team. They would also teach me about pain science and how to take control of my pain. And I could participate from home since the treatment was all virtual. 

I was very skeptical and thought it wouldn’t work, but I decided to give it a try and postpone suicide for six months.

I listened, practiced, and learned a lot about managing pain with Override’s team. Three months into it, I still had bad pain days, but within 40 minutes without any pain medication, I could reduce my pain from a 10 to a 5 using a technique Override taught me called deep breathing and visualization. That was faster than a pill would work! I was even able to sleep more than 25 hours a week.

Four months into Override’s program, I could stop any suicidal thoughts and started having a little hope. After 30 years of pain, I learned to accept it. I had a little control, felt calmer, and could smile. In five months, I could smile more, manage pain better, and my self-esteem went up. I could laugh without it hurting, and I could reduce pain in 27 minutes. I had hope and could achieve my goals.

Since completing my program at Override after nine months of treatment, I have peace and joy five out of seven days a week. It’s not perfect, but it’s pretty unbelievable compared to where I was.

I recently ate out at a restaurant, went to church and sat through services, and attended a prayer group. I haven’t done these things in 18 months. Now that I’m getting out, I can talk to someone other than my dog, and he’s grateful!

Just months ago, I didn’t think I had any purpose in life except to suffer. Now, I’m planning to volunteer with an organization starting March 2024. I have hope that I can be a light in the darkness, and I know I have a future thanks to Override. I am getting better at the tools, yet would still like a cure.

Learn more about Override via their website and our June 2023 livestream.

Please consider supporting RSDSA with a monthly gift.

My Transformation from a Life of Pain to Purpose

Written by James Doulgeris, Chairman, RSDSA Advocacy Committee

I have CRPS. The bad kind. Type 1. Full body. With Parkinson’s, severe eosinophilic asthma, mast cell activation syndrome and other nasty autoimmune diseases.

Having spent my entire career at the highest levels of healthcare, I was frustrated. I did well for myself selecting an excellent team of physicians and managing my care myself but was hopelessly overwhelmed because I could not do the same for others. And that is not for lack of trying.

I soldiered on until I realized I was fighting the wrong battle. Fighting an incurable disease that gets worse over time against an apathetic and often ruthless healthcare system and uncaring government is a dead end – literally.

An epiphany helped me to realize that fighting for a purpose changed my life. When Jim Broatch, RSDSA’s Executive Director, recruited me to chair the Advocacy Committee, it all came into focus. Instead of dreading each new day, now I cannot wait to get to work. The pain is still there. So is the fatigue. So are the limitations but they are motivations to work harder. I became a warrior with five major initiatives, and I invite you to transform your life by joining us in this important work:

  2. 1. Bringing drugs like ketamine that bankrupt so many of us or are simply out of reach today for so many on label with standard protocols so insurance will cover the cost and our pain will be better controlled. 

  1. 2. Organizing physical and virtual support groups with standards and resources available to everyone.

  1. 3. Partnering with a company at the cost of less than $100,000 to screen over 10 million people for CRPS using AI to start early treatment when it is most effective is within our grasp. It just needs funding. Let’s go and get it so we can turn ten million into 300 million

  1. 4. Launching an awareness and educational program to battle bias, ignorance, and mistreatment that so many of us face daily that resulted in a $261 million award to the Kowalski family from Johns Hopkins All Childrens Hospital in the Take Care of Maya case is just a large grant away. We need advocates to urge our community to lobby congress to fund it.

  1. 5. Getting the resources to find a cure using precision medicine. Using National Institute of Health numbers, CRPS costs over $62.7 billion annually while a potential cure is only $150 million away. The initial US House of Representatives reaction was enthusiastic. We need to bring this home as a team.

No one is going to do these things for us, but we can do them for ourselves. We overcome grinding pain and challenges every day. We can change that! Join us by transforming that pain warrior in you to fighting to lessen the pain, spare ourselves and others from bias and ignorance in the medical community through awareness and education and doing our best to find a cure. Make each day one to look forward to. Not every day will be a good day but accomplishing just one thing allows you to live a life of purpose and fulfillment.

Take your first step by contacting us at [email protected]. 

Our best wishes for a happier and purposeful New Year.

Jim and the Advocacy Team

Please consider supporting RSDSA with a monthly gift 

RSDSA receives no governmental support (it is time to change that!). We are totally reliant on donations from the CRPS community and from our fundraising events. Thank you for your kind consideration.

For more information or with questions, contact Jim directly at [email protected].