The first time Fiona Symington rode a bike after working so hard to cure her chronic pain, she felt terrified but excited.
The 42-year-old resident of Oxford, England, was afraid that after a quarter-century coping with enduring hurt, she wasn’t physically fit enough to ride and that her “proper pain,” as she puts it, might come back. She’d been well for a few weeks and was still testing her body in various ways to see whether she was truly free from her symptoms, and to find out what her new body was capable of.
She started the ride tentatively. Her muscles already burned a bit as she followed the path from her childhood home to the road. Her knees hurt because she was riding the too-small bike she’d had since age 11, but there was no trace of the debilitating pain she’d felt for so many years. Excitement took over and she silently repeated to herself that she had a healthy body and could push on, a message she’d learned during the brain retraining that cured her.
After about 10 minutes, she stopped in a panic. What if my pain kicks in? she thought. What if I’m not fit enough to get back home?
“Then I looked into the field next to the road and a whole herd of cows stood staring at me,” she tells me in an interview. “There was no one else around. Wanting someone to appreciate the moment, I shouted, ‘Hello, look at me! I’m on my bike! I am riding my own bike!’”
The cows just kept staring at her. She surveyed the hilly road ahead, lost her nerve, and headed home. Still, this 2019 outing was a significant milestone in Symington’s pain journey. Finally free to go outside again and ride, she mulled the many things she’d missed out on during those decades in pain. Now, she’s flown in a hot-air balloon and tried snowshoeing, hiking, rock climbing, and ice-skating.
“This is my second chance at life, and because no one knows the future, I try to make the most of every moment,” she says.
When the pain all started
Symington’s pain began when she took a riding lesson at age 10. The pony spooked and took off, and she didn’t know how to stop it. Eventually, she fell off and was knocked unconscious. She appeared to have no damage but began in the following weeks to feel pain in her back and legs. About six months after the accident, she awoke in severe pain — and it stuck around from there.
“I remember thinking I would go to the general practitioner and he would tell me there was a strain of some sort and I would recover, but the pain never went away,” Symington says.
Gradually, Symington experienced pain in her hips, ankles, elbows, back, shoulders, and sternum. It changed over the years depending on how active she was or how stressed, but she always felt “dreadful” pain. One year it was so intense it felt as though she were on fire. Sometimes it felt like something was gnawing deep in her hip. From childhood through adulthood, she was in and out of hospitals, looking for a diagnosis and help.
“I found it hard to describe my pain to others because it could be so bad,” she says. “It altered my personality. I was tired from managing it and often grumpy. I had to work everything around my pain and many times standing or sitting for long was too hard. I spent a lot of time lying in bed trying not to move to get it to calm down. My pain ruled my life.”
Litany of treatments
Symington tried dozens of doctors and treatments, with no long-term positive results. She’s been variously diagnosed with a litany of painful conditions — fibromyalgia, Ehlers-Danlos syndrome (EDS), complex regional pain syndrome (CRPS), chronic pain syndrome, and postural orthostatic tachycardia syndrome (POTS). Doctors also told her she had myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), which left her exhausted. She’s tried a slew of different medications (“which never really worked much”) and invasive treatments such as two-facet joint denervations, epidurals, nerve blocks, and something called prolotherapy, which involved injecting dextrose into ligaments to strengthen them, reducing pain.
“I also used a TENS machine and a doctor once suggested ‘cutting my nerves’ although he didn’t go into detail as to what that would involve” she says. “I did physical therapy, hydrotherapy, and occupational therapy. My mum was desperate for answers so she took me to every alternative practitioner she could think of — I tried osteopathy, acupuncture, faith healing, reflexology — but still nothing worked. No one seemed to know what to do. I worried I would never be well enough to work or have a ‘normal’ life as an adult because of my pain.”
One of the most demoralizing effects of Symington’s pain was that she struggled with relationships. She felt isolated from her friends, who couldn’t understand what it was like to live in pain.
“I often didn’t have the patience to interact with others,” she says. “I worried that I talked about my pain too much and, indeed, at times I lost friends because they felt I did. Pain was profoundly isolating for me. At worst, I was envious that they weren’t suffering in the way I was. My life improved when I met other people living with pain and I could be open with them. We found ways to laugh together and build strong relationships. That helped me keep going.”
Symington eventually gave up on trying treatments. Then, about six years ago, she saw an ad for a “brain retraining” program on Instagram. She was extremely skeptical but there were so many glowing testimonials that she felt she had to try it. She decided she was going to give it her all, so she cleared her schedule to spend hours a day doing the required exercises — and got results within weeks. Others take longer to benefit from brain retraining.
“For a very long time, chronic pain ruined my life,” Symington says. “It took away so much joy and opportunity, relationships, and career choices. It stole my hope.”
What is brain retraining?
Symington is exceptional in that she ended up pain-free, but as a member of the brain retraining community, she sees more and more people finding such relief. Most chronic pain sufferers can feel at least a little better by focusing on the messages their brain sends their bodies and vice versa.
The basis for brain retraining lies in humans’ particular ability to adapt to novel situations. In fact, the brain creates fresh neural pathways when faced with new circumstances all the time, a phenomenon called “neuroplasticity.” The concept is simple: Like plastic, neural pathways are malleable. The problem: The brain can get stuck in habits and patterns.
This is a problem for people in chronic pain, which is pain that lasts longer than three months. After the usual healing time for an injury or illness, the brain can get its signals crossed.
Neural pathways can actually create the perception of pain, absent of any physical problem. Pain can become a conditioned response as the body and brain are overly sensitized to it.
Then, chronic pain itself becomes the disease rather than any underlying condition. Some researchers describe this sort of pain as a memory, encoded into the neurological system despite the absence of a real source.
But if the brain can create pain, it can also take it away. That’s the idea of brain retraining. The technique concentrates on rewiring neural pathways to recognize that pain is a false alarm, that rather than alerting an individual to damage and danger, the person feels safe.
Obviously, this does not help if there is an ongoing injury to the body, like a cancer, but for conditions that are more amorphous, widespread, or can’t be traced to a physical problem, brain retraining can bring relief and even a cure, as it did for Symington.
“The program I did taught me that once you understand that pain doesn’t always mean physical damage, then pain signals can actually be calmed down,” Symington says. “Such exercises as meditation, journaling, and ‘somatic tracking’ — with which you get more mindful about your body — are all fantastic in helping with this. But simply learning about pain science and how pain gets generated is enormously helpful. The way the program explained everything to me got through to me in a way nothing else had before. I was being told my pain was absolutely real but that my brain didn’t need to create it anymore. I repeated the brain retraining exercises over and over to create new neural pathways in my brain.”
Symington did a type of brain retraining called Pain Reprocessing Therapy (PRT), pioneered by the Pain Psychology Center in Southern California. Learn more by checking out its website, a book called The Way Out: A Revolutionary, Scientifically Proven Approach to Healing Chronic Pain by one of the center’s leaders, and the Curable app.
Brain retraining showed Symington that the answers to pain often lie within. “For plenty of people, pain comes when there isn’t really anything wrong with their bodies and it’s their nervous system that is trying to express fear or another emotion,” she says. “I am grateful that if I get symptoms now, I can look inside myself and gauge how safe I feel or what emotions I need to connect with to get my nervous system to calm down.”
Lessons learned
Symington’s been pain-free, except for usual daily exertion, for about six years. She describes her new life in one word: “Wonderful!.”
She lives in a house that was built in 1891. “I have a small garden that I’ve transformed into a wildlife-friendly place. It is my sanctuary. I have a small pond and grow dahlias and sweet peas. I also have an elderflower tree and a black currant bush.”
When she was in chronic pain, Symington was unable to work, but she is now building a career as a psychologist, starting with earning a master’s in health psychology and working as an assistant psychologist. Long term, she hopes to become a clinical psychologist and work with children.
“I feel passionate about making sure that other children have a better experience of being in pain than I did,” she says.
She also spreads the word about brain retraining and what it did for her on social media and hopes to start a YouTube series. Her message is that not everyone is going to be able to get out of pain, but everyone can do something that helps them feel a little better.
“That might be changing their diet or exercise regime. It might mean working on their sleep or their stress levels,” she says. “Social connection is also crucial. Feeling joy and being with others helps calm our nervous system. Making friends can be hard when you live with pain and particularly if you have lost confidence, but it’s always worth trying because there are good people out there who care and will benefit from having you in their life.”
For Symington, the worst part of living with pain was fear about the future. Her pain was so intense, she constantly worried about how long she could survive. She needed just one person who could say to her, “I believe you are in pain, and I can help you.” That would have made all the difference in her life, she says.
“Now I can look back on my pain and see it gave me extraordinary compassion and resilience. I survived 25 years of awful pain, so I now feel I can survive anything.”
Symington wants to tell fellow sufferers that they are only human, that worry can show up as anger, so they should keep that in mind if they are struggling with relationships. Reaching out and getting outside support, whether that is from a professional or through a support group, is vital to finding relief.
“Pain is too hard to bear alone,” she says. “If you are having a bad time with pain, please don’t lose hope. Don’t give up. Things can change more than you can possibly believe.”
Written By: Randall H. Duckett
This article was originally published on Medium.