By Guest Blogger Emily Salser Nunez
How important is mindfulness and CRPS/RSD? According to Emily, it is crucial. Read Emily’s story and then see how being mindful helped her.
Eight months after fracturing my small toe in a simple misstep, I was diagnosed with Reflex Sympathetic Dystrophy (RSD). I had never heard of this disorder when my podiatrist concluded this was what was causing my excruciating pain and inability to walk. I knew something was seriously wrong, as over time my foot felt like it was burning and became bluish-black in color. So, at first, I was relieved that I finally had an explanation for what was happening to me. But then the podiatrist looked at me with deep concern and told me this condition can result in lasting, debilitating pain. “This is beyond my realm of expertise,” he told me. “You’ll need to find a specialist who can hopefully help you re-gain use of that foot.” Hopefully, I thought, was not a word I like to hear from a doctor. He wrote down the acronym RSD on a sheet a paper, and told me to go research the condition.
Following the doctor’s instructions, I went home and immediately Googled RSD. As I read about the horrors of this neuro-inflammatory disorder, I naturally became overcome with fear and anxiety. I wondered whether I’d ever be able to walk again, or whether this condition would spread through my body like so many others with this nightmare of a disorder. And as my fear and anxiety levels crept higher and higher, I noticed something—the swelling in my foot got more and more severe. This was a very important observation, as I noted a direct connection between my emotional state and my level of inflammation.
A couple months later, I saw a pain specialist who was able to successfully treat my RSD. She was the first person to confirm what I had observed on my own—that high emotions cause an increase in neuro-inflammation. Of course, the flip side of that is maintaining a calm emotional state can help lessen the severity of the inflammation and pain. She was quick to remind me that being fearful and anxious did not cause me to get this disorder in the first place. There is still a lot unknown about RSD, including why it occurs, but for me it is related to an autoimmune process already very present in my body. I also have lupus, and my pain doctor believes that RSD may be a manifestation of systemic lupus in my nervous system. So, while we can’t blame the disease entirely on emotions, we do need to acknowledge that emotions can have a profound impact on the disorder.
As I began a series of sympathetic nerve blocks to treat my RSD, I also began seeing a pain psychologist. He was able to explain to me the connection between stress, pain, and inflammation. When we are stressed, we tend to tense up our muscles, thus constricting blood flow and increasing pain. When we are calm, we let our muscles relax, and our pain is lessened by increased circulation. He taught me how the more I became anxious, stressed, and worried about my condition, the severity of the pain would increase. “Don’t worry about the pain,” he told me. But of course, this was much easier said than done. We all know that someone demanding us not to worry does not help mitigate our worries in the least bit. I needed more instruction on how not to worry.
To help decrease my stress and anxiety about living with RSD, the pain psychologist began a series of sessions with me on mindfulness training and biofeedback. The first exercise we did was a deep breathing technique. The breathing exercise is simple: inhale slowly through your nose, filling not only your lungs but also your stomach with air, and then exhale slowly through your mouth. Your exhale should ideally be much longer than your inhale. My pain psychologist had me to do 15 of these breaths at once, with my eyes closed. He instructed me to start doing these 15 breaths at set times during the day. So, I set an alarm on my phone at five times throughout the day as a reminder. Once I began incorporating these meditations into my daily life, I definitely noticed I was becoming more calm and centered. Even if I was in the middle of doing something, when that alarm went off on my phone, I stopped what I was doing to just focus on breathing.
Now, to be clear and honest, my RSD symptoms did not disappear when I started meditating consistently. But, I was able to cope with the symptoms better, and I was able to better control my emotional reactions to the pain I was experiencing. As my doctor noted, relaxation is incompatible with feelings of anxiety, frustration, tension, and pain. When I was having a particularly painful day, I would just breathe. The breathing exercises gave me a distraction from pain. After all, allowing yourself to focus only on the pain is a dangerous path to go down. By directing your attention to breathing, you’re directing your attention away from the pain.
My pain psychologist even showed me how meditation was having a physiological impact on my body. He connected my hands to thermometers, which were connected to a computer. As I breathed deeply and consciously relaxed my body, I could see on the computer that the temperature of my hands increased—a sign that my body was more relaxed with increased circulation. When the doctor asked me to speak about stressful topics or solve difficult math problems, I could see the temperature of my hands falling on the computer—a sign that my body was stressed and tense, with more constricted circulation. This technique is called biofeedback, and has helped me learn to control the blood flow to my hands and feet. As someone who also has Raynauds Phenomenon (a circulation disorder that causes blood vessels to narrow), this has been particularly useful!
Another important mindfulness tool that the pain psychologist taught me was about the impact of positive self-talk. Self-talk (or they way in which we speak to ourselves) can have a big impact on pain levels. For example, negative self-talk would include phrases such as:
- “I can’t believe this is happening to me.”
- “I’ll never be able to enjoy anything if I can’t walk.”
- “I can’t take this anymore!”
- “No one will ever understand the pain that I’m in.”
Negative self-talk results in a self-defeated mind, which translates into pain signals being interpreted as suffering and misery. Now, if we change some of that negative self-talk into positive self-talk, it might sound more like this:
- “It’s unfortunate that I can’t walk today, but there are many other things I can still do and enjoy.”
- “I’ve had days this painful, and I have always gotten through them. I can get through this one.”
- “I can distract myself from the pain by meditating, watching a movie, or reading a book.”
Mindfulness training teaches us to be conscious of our own self-talk. By training yourself to be more understanding of your own illness, you can bring in more positive self-talk and decrease your level of overall discomfort.
There is certainly a lot about this disorder that is out of our control. But it’s comforting to know that we have the power to control how we respond and react to the pain of RSD. Pain doesn’t necessarily have to result in suffering. Learning mindfulness and meditation techniques was and continues to be a very important part of my RSD treatment plan. My RSD has improved a great deal, but it is still very much present in my life. When the next flare comes, I know that I have many mindfulness resources and tools to use to help me cope with pain and stress effectively.