I’ve been diving into blogs and websites both written by and for people who have CRPS in recent weeks. For me this type of interest ebbs and flows. At times I can’t get enough, and it seems that if I just think harder and give more brain cells to solving my health puzzles, it will all come together (and by God’s grace, this does often happen). I read research journal after research journal, support groups online, and throw my full energy at solving (or at least attacking) the problem. Then I burn out for a few weeks to a few months, and I disappear from said support groups, I may choose not to write on my blog for a while, and I don’t care to know anything more about whatever it is I was so obsessed about knowing to begin with. Welcome to my brain.
Anyways, this new diagnosis (CRPS) presents a laundry list of problems to be attacked, and I’ve been going at it full force this week. What I’ve found most interesting in reading stories of those who have CRPS and their progress in healing has been the psychological aspect of healing and the routes they took, mentally, to get there. While implementing lifestyle and oftentimes dietary modifications, these CRPSers also employed positive coping strategies, meditation and mindfulness exercises, psychotherapy, biofeedback, positive thinking, and other mind-over-body methods into their “healing plans”.
I am writing up some of my observations (this is anything but a research article! – just my own informal notes on what I’ve read, some of which I’ll provide here, and across the web) so that I can develop a clearer plan for my own healing mindset, which may also help me move onward with developing positive measurable goals. Perhaps these ideas will be helpful to you too.
“I have always preferred to handle pain by making healthy lifestyle choices and enjoying the natural endorphins and cortisol release when I exercise, rather than relying solely on conventional medicine. As a self-determined treatment in July 2006, I went on the Inflammation-Free Diet (which I continue today)….I have found this diet is essential to maintain central nervous system health, expand blood vessels, and reduce inflammation in the body. I also …recently relocated and live in a warmer climate.
I also controlled the symptoms with daily exercise, acupuncture, weekly massages, pilates, and yoga to improve circulation and relieve the pain. I found spending time focusing on my health and healing and not pushing myself—including sleeping and relaxing—was very beneficial.” – Heather Davies, CRPS patient, RSDS.org Stories of Hope
“The second and very critical part of the CRPS program consisted of psychological sessions ….It was cathartic to talk about this to someone who understood the devastation of chronic pain and the loss of who one is. But then [my therapist] began to focus the sessions on developing coping techniques, such as progressive relaxation and deep breathing. We also began experimenting with controlling pain via my thoughts and attitudes.” – Keven Mosely, CRPS patient, RSDS.org Stories of Hope
Not only did some – though not all of these folks – experience a decrease in their CRPS symptoms, but their general outlook on life seemed improved as well. They were mindful and focused in their decisions about how they would spend their time/energy during the day, even when the pain or life events weren’t working in their favor and those plans had to change by the minute. Oftentimes their mindset was one of collected control rather than of victimization or chaos; even if they only had just one thing they felt they were truly in control of (for example, their tone of voice in their response to a family member), they used this one thing as a grounding point. If I may be so bold as to put words into their mouths, I think phrases such as “I am in control of how I respond to this situation; I am going to finish this task in the next 5 minutes, and then I will decide what I will do afterwards; I can do this; This may not turn out the way I want it to, but I have the power to accept the outcome and work within its restrictions.”
You know what? Rather than put the words in their mouths, I’ll let us both benefit from what they have already said themselves:
“….I continued to search for medical answers. I researched everything about my symptoms, possible diagnoses, and treatment options. I also reached out to reputable doctors and hospitals, turned to the Internet and medical journals, tapped into my network, and connected with those who had experienced similar symptoms. I needed to listen to the doctors, but I continued to be my own medical advocate, so I could make informed health care decisions.” – Heather Davies, CRPS patient, RSDS.org Stories of Hope
“I have to take a break sometimes when the pain is bad and just breathe, but I don’t think about it, I focus on the point: learning to perceive what’s really there.” – Isy Aweigh, CRPS blogger
“We cannot sidestep our fears, they will lurk and lurk. Nothing is achieved by worrying, but sometimes we just cannot avoid it. And, as tough as it is to do so, training our minds to step away from the worrying is so very important. Facing our fears and working through them can boot those worries into something we know. That we’ve already dealt with. So their reappearance is familiar because we’ve already taught them a lesson before and we know we can do it again! Yes, they rear their ugly heads from time to time, but we know them, we’ve already worked through the fear, and we made it to the other side. Otherwise we might have missed out on life. On moments that can be glorious. A moment in the sunshine. A message from a friend. A really good cup of tea! ….I’ve got really good at turning my brain round to look at something else. Not to ignore the real issues, but because I’ve already turned them over every which way, I know them as well as I know myself. So I just do not need to spend time watching the sad re-run! The best techniques are the ones that make me feel empowered, useful or creative. So I research information on my conditions to better understand them, (and to better explain it to the doctors, of course!), and I tell other people what I’ve found and write this blog just in case anyone out there finds it useful/amusing/distracting, too!” – Elle and the Autognome, CRPS blogger
“I’ve found that happiness creeps into my life in new ways. Admittedly I look for it because I want to be happy. I’ve spent time thinking about what truly makes me happy, and it really is the simple things that make me both happy and kinda peaceful on the inside, too. I smile when the sun shines. I really enjoy a nice cup of tea (oh okay, many many cups of tea!). I adore my friends near and far….I loved hearing the first Spring birdsong a while ago….
I set myself little goals because that way I am not endlessly fighting to get to a far-off distant goal. Instead I achieve little goals along the way to the big goal, each of which gives me a sense of achievement and makes me smile. It brings a feeling of capability and self-worth with it, too. Often my big goals are questionable as to whether I can actually achieve them, but my view is that I don’t know if I don’t try, and if I achieve lots of little goals along the way then every bit is an achievement to be proud of, however far I do or don’t get in the broader picture.” – Elle and the Autognome, CRPS blogger
Most of the stories I’ve read also involved a desensitization program – touching the affected limb(s) with various textures and pressures to help the brain understand that these are not to be painful sensations, even though they hurt – which again is self-directed mind-over-body. The idea is to re-teach the brain how it should interpret specific sensations.
“At the same time, a surgeon recommended I start physical therapy and a transcutaneous electrical nerve stimulation unit to desensitize the nerves in my legs and feet. This overrode the pain by interrupting the pain signals transmitted to the brain. I also had an intense home desensitizing therapy program, using all size and textures of balls and other items: sandpaper, marbles, golf balls, baseballs, etc. ” – Heather Davies, CRPS patient, RSDS.org Stories of Hope
“Where there is normal perception, or even nearly-normal perception, I stroke from the normal area to the abnormal area… and tell my brain and body, with absolute focus, “This is what normal feels like. Feel normal HERE now. This is normal. Feel it here now. That is the correct feeling. It’s just a washcloth. Feel a washcloth.”
Not a burning sheet of sandpaper twice the size of my leg. Not a blunt sense of almost nothing, somewhere else.
A washcloth, right here.
When I’m doing this, I don’t even think about what the abnormal feelings are like…. I shut the incorrect perceptions out of my mind and dismiss them, over and over, as obviously false information.
This combination of factors is what makes it so effective. The multisensory inputs, the constant messaging of proper information, eventually overrides the false information.” – Isy Aweigh, CRPS blogger
When taking these patient stories (plus the others I’ve read that are lodged in my gray matter) as a whole, it seems that a desensitization program can only be done effectively when the CRPSer is ready and willing to incorporate the affected limb(s) back into his or her “whole body picture” and reintegrate these body parts despite past dissociation (which is typical of CRPS). This involves pushing through the pain of increased activity through employing distraction techniques and other coping mechanisms and sending “positive messages” to the affected limb(s) while encouraging positive self-talk or positive thoughts about the affected limb(s) despite obviously distressing visual signs.
“During this treatment time, it dawned on me that since getting CRPS, I had somehow made a psychological disassociation between my brain and my foot. Had I unconsciously done this in order to cope with the physical degeneration of my foot? How else can one deal with seeing a part of one’s body slowly die off? I had felt so betrayed, shocked, repulsed, by the physical changes in my foot over the last several months. However, I learned that by psychologically dissociating myself from the limb, I had probably made the CRPS even worse, since by doing so my brain had slowly shut my foot off from its life giving functions.
With the medical team’s help, I realized that healing was rooted in re-integrating my dying foot back into myself. One method that worked well eventually became a nightly routine. Every evening after work, I rolled up my pant-leg and took off all my socks (I usually wore two or three pairs all the time to try to keep warm). I would proceed to force myself to look at my atrophied and discolored leg and send it positive life-giving thoughts. In those several minutes each night, I tried to open my mind and heart back up to the dying limb. Then John would rub and massage the leg for several minutes. By having him validate and acknowledge the condition of the leg, I was more able to re-accept the limb back into myself, as a part of me. Rubbing my foot also increased circulation. Initially I could tolerate rubbing for only a few minutes due to resulting pain, but as my skin became de-sensitized to the stimulation, I learned to tolerate several minutes…..
Somehow the visualization, positive “foot talk”, daily exercises, pool walks, nightly massages, and pain medications had begun to slowly turn the tide. The combination of strategies was tediously wearing down the CRPS.
Part of the psychology of recovery for me meant avoiding any negative information about CRPS, including negative articles, Internet chat rooms, stories, and research studies. This did not mean that I avoided all information about CRPS, but instead I filtered the information, choosing to read only the positive and encouraging news while leaving the rest behind.” – Keven Mosely, CRPS patient, RSDS.org Stories of Hope
“The still, quiet voice inside me indicated that dissociation should be intentional, purposeful, and temporary; if I wanted to be well, it could not be habitual. My inward guidance wasn’t telling me to stop dissociating (that is, mentally and emotionally separating myself from that part of my body), but to do so only when I needed to, to separate from too much pain.
Remaining dissociated is like disowning that part of my body, and I can’t persuade it to do anything when I’ve essentially cut it off. I need to persuade it to heal, and that’s a tall order. ….that quiet inward voice said, “Remember pre-injury, not post injury. Remember that.”
My brain needs something to reach for that has inward meaning and emotional oomph, so vague dissatisfaction is not a helpful point of reference. A sturdy inward “YES” is the goal: re-remembering this body, with all attached limbs fully integrated, blood coursing warmly throughout, everything moving and working, and that radiant feeling of blooming health and returning vigor.
I’m inventing a frame of mind that doesn’t exist yet. Both remembering and re-membering give me important clues as to what it should be. I’m delighted to have figured that out.” – Isy Aweigh, CRPS blogger
“I was terrified of the color and temperature changes of my feet and the pain and thought I would make the symptoms worse. Everything was extremely painful at first, but I persisted. The temperature changes and my level of pain, its speed of onset, and the time until the symptoms were relieved, all improved. After six months of slow but steady improvement, I began to notice improvement in the temperature changes, and I began to walk in baby steps. I learned to recognize the pain signals and the temperature-discoloration changes, and to focus on other thoughts to get past the pain.” – Heather Davies, CRPS patient, RSDS.org Stories of Hope
And in the end, these CRPSers have chosen to accept life as it comes, which may itself make them more successful in managing not only their disease but their life roles as well.
“I still have symptoms every day, especially in cold temperatures, and the symptoms in my feet and legs occasionally flare up and it scares me at times. As I see it, I had a choice: I could have woken-up each day for two plus years angry and focused on the pain; or I could accept everything that happened to me—the good, bad, ugly, and having CRPS—and focus on medical answers, healing, and positive energy. Through it all, I have always kept my optimism and am managing and living a healthy and happy life with CRPS, even venturing back into my enthusiasm for sports.” – Heather Davies, CRPS patient, RSDS.org Stories of Hope
To wrap this up, Keven said it so eloquently when he said,
“I keep my mind and emotions off of my problems as much as possible by keeping involved in projects and activities that made me feel good about myself and gave me a sense of control. CRPS has a way of trying to take over every aspect of someone’s life and it will succeed if one lets it. One thing CRPS can never control is attitude. As Dr. Charles Swindoll has written, “The longer I live, the more I realize the impact of attitude on my life. Attitude to me is more important than facts. It is more important than the past, than education, than money, than circumstances, than failures, than successes, than what other people think or say or do. I am convinced that life is 10% what happens to you and 90% how I react to it. And so it is with you….we are in charge of our attitudes.”” – Keven Mosely, CRPS patient, RSDS.org Stories of Hope
If you found this post helpful or interesting, I hope you will check out these brave souls’ stories and blogs. There is much to be learned from them and I count it a blessing to have stumbled across their information online as I searched for others with similar challenges. Here’s to mind-over-body healing!