Written by Jane O’Laughlin for the RSDSA blog.
This article is for those with CRPS who are searching for a different path to manage the syndrome. The path was filled with many unexpected turns, side roads, road blocks, incredible new people in my life, and constant discovery. Today I am again an avid athlete pursuing my passions of running and swimming, with plans of competing again. I enjoy my three active kids and husband very much. And, I recently went back to work as a family nurse practitioner, a career I love.
It wasn’t always this rosy.
In January 2003, I was diagnosed with CRPS following surgical carpal tunnel repair. For six months I could not cut the food on my plate, do an ounce of housework, cooking, gardening, nor hold the little hands of my children due to severe allodynia in my right hand. Though I had formerly been an avid triathlete, pursuing sport again seemed like a far-off fantasy. The CRPS quickly spread to my other hand. I pursued physical therapy initially. Then, as symptoms worsened and my hands began to atrophy, I sought pain control through a hospital-based pain clinic.
I received stellate ganglion blocks several times, and then moved on to Neurontin® therapy for pain control. I experienced memory loss, fatigue, and felt buzzed all the time. I realized I couldn’t be the mother I wanted to be on that drug, so I asked my pain specialist to wean me off of it. I sought relief from a cadre of reputable physicians, all of whom had plenty of hope for me regarding pain control, but there was no improvement. Muscle atrophy worsened and I decided to try alternative approaches to pain control.
I tried traditional chiropractic care and acupuncture. Both gave me modest, brief relief. Then, a well-trained massage therapist referred me to Travell and Simon’s Myofascial Pain and Dysfunction: The Trigger Point Manual. I read chapter after chapter, realizing that my CRPS was likely associated with many trigger points in my muscles, which gave me enormous pain beyond the terrible burning pain of CRPS. I knew I was onto something big when some of the self-treatments for these trigger points actually gave me a little real relief. I had to find an expert in the field of neuromuscular care who was familiar with CRPS. The problem is that muscles are the “orphan organ,” physicians are rarely muscle specialists, and physical therapists weren’t entirely trained in trigger point release. I wrote to the editors of the myofascial pain texts, asking for local specialists in their field. After numerous letters and emails, I located a specialist relatively close to home. I was cautiously optimistic.
My specialist is a chiropractor trained extensively in the field of neuromuscular care, with an emphasis in muscle trigger point release. After just one visit, I knew I had found a person who could really help me. He quickly referred me to a clinical psychologist specializing in biofeedback for pain control. Working closely and frequently with both of them, I began to have pain relief.
“Run Through the Pain, Jane”
The psychologist encouraged me to look at CRPS as a pain pattern which needs overriding, not masking. If I could train my body to override the pain, I would gain control of this monster that had taken over my life. I was advised to start running again. Initially, I was terrified of the pain I knew I’d encounter and which might flare up areas that had improved with my new care. I was told “Run through the pain, Jane.” Basically, I needed sheer willpower to make this work. I was taught to apply biofeedback to running, learning how to recognize the pain signals, then letting go of them through breathing techniques and focusing on different tactile sensations while I ran. It was very painful at first, but, I persisted and found that my level of pain, its speed of onset, and the time until pain was relieved all improved with each run I took. The pain control lasted longer following my runs as I continued to train. I continued to receive frequent trigger point therapy, which allowed me to have less pain as well. I couldn’t have run without both modalities and a huge dose of determination to make it work.
After four weeks of slow but steady improvement, I began to have pain in one leg. Initially we figured it was a recurrence of some former low back pain and sciatica. Later we realized it was CRPS spreading to my lower extremities. Running became too painful, so I was encouraged to start swimming again. Formerly a competitive masters swimmer, I could swim only 100 meters before the pain was too much to continue. Still, I persisted with the encouragement of both of my doctors, applying biofeedback to pool workouts this time and receiving regular trigger point release from my doctor. I also began a home stretching program to decrease the frequency of trigger points. Steadily I improved. After two years out of the pool, I rejoined my former swimming coach and team, with whom I continue to swim today. My chiropractor and I also worked as a team, exploring numerous therapeutic modalities for the CRPS in my legs before we found a method that worked for me in that area. Again, persistence paid off. I began to run again, and, though my legs have suffered some set backs, I am running regularly again and hope to race soon.
I take no pain medications for my CRPS. Natural endorphins and cortisol release when I maintain aerobic output are the “drugs” which keep me comfortable. The nerve signals which transmit CRPS pain are overridden by nerve signals which tell my muscles to perform. I combine daily exercise with a regimen of biofeedback, 30 minutes of stretching one to two times per day, a diet filled with fruits and vegetables, chicken, fish, nuts, and complex carbohydrates, and I take high doses of Omega-3 fatty acid supplements. I see my chiropractor for trigger point release every one to three weeks. Yes, I still have a small amount of pain every day. Occasionally it flares up on me. Yes, it is manageable. Yes, it still scares me at times, and, yes, I am living a wonderful life again, even venturing back to practice as a nurse practitioner
1. Without a doubt, fear of pain is a principle driving force of pain. The pain is so severe that we become afraid of it. We allow it to control our lives, anticipating its effect on everything we do. We become inactive, suffer atrophy, and the pain only grows. Once I was able to experience even a tiny bit of relief, I held onto that feeling and continually focused on mentally capturing it again and again, no matter what it required. I became more confident of pain control the more often I experienced it. It no longer controlled me. I use these feelings to fuel my workouts, which are still painful and exhausting at times. When anxiety creeps up on me, I seek support immediately, recognizing that I won’t allow myself to slide down the slippery slope of pain and fear again. My doctor is continually supporting and encouraging me.
2. Find an inspiration. Mine was my family. I knew I couldn’t let myself continue to be the mother in pain to my children, nor the wife in pain to my husband. I also dreaded the thought of being that “pain patient” that I had cared for many times in my own medical practice. These inspirations kept me searching for answers, and continue to drive my determination to practice daily self care, which can be exhausting at times.
3. Don’t isolate yourself. Formerly a very social person who loved to entertain, I found I didn’t want friends to see me hurting or unhappy. I knew I couldn’t hold up through social gatherings very long due to the pain. Rather than isolate myself, I forced myself to frequently have friends over, hosting potluck happy hours often. I’d simply pull open my silverware drawer, let someone open the wine, and allow those whom I loved to heal me with their friendships. I found that distraction is a powerful antidote to pain, often giving me several minutes at a time of pain relief if I could relax enough to get caught up in intriguing conversation. A glass of wine helped this process, as did eating wonderful food.
4. Seek professionals who have experience with trigger point release and biofeedback. Those suffering with CRPS develop trigger points frequently. Active release therapy (ART) and spray and stretch methods are very effective. Biofeedback must be done with a professional familiar with pain control. Search online. Write to textbook editors. Network with anyone you know who has experienced chronic pain. Be persistent!
5. Volunteer. Reach out to others. It’s so easy to feel despair and anger when CRPS is present. Force yourself to do something – anything – for others. Just making the elderly lady down the street a bouquet of flowers from your yard or listening to kids read at school gives our minds a good dose of fulfillment.
6. Stay the course. Just recently, I became too confident of my recovery and slacked off on biofeedback. I suffered a setback with a large CRPS flare, and the accompanying anxiety it provokes. My doctor counseled me to get back on course, reminding me that I must work harder at my daily care regimen when I feel good. Everyday I remind myself that I am doing these things to manage CRPS for today. Tomorrow is another day.
7. Finally, believe in yourself and others will, too. Never, ever give up! Now, when I shop for running or swimming supplies and am asked what event I am training for, I say, “I am training for life.”
Travell and Simon’s Myofascial Pain and Dysfunction: The Trigger Point Manual v. 1 (Hardcover) Travell JG, Simons DG. Myofascial Pain and Dysfunction: The Trigger Point Manual. Vol 1. Baltimore, MD: Williams & Wilkins; 1983.