Persistent Pain: A Patient’s Perspective
This series of blogs are offered up by a patient of mine. Ellen found herself struggling with significant dystonia and disability with regards to walking and generalized activities of daily living. Although the majority of my practice centers around pelvic health and persistent pain specifically, Ellen’s journey inspired me to apply all that I know about pain to a different output of the brain, muscle spasms.
Ellen shares her journey in the first person, with a realistic look at her struggles and triumphs. I hope that her journey motivates you, if you are someone with your own physical struggles. I hope that her journey also motivates therapists and clinicians to take a whole-person perspective for every single output of the brain…. Pain, muscle spasm, muscle tightness, urgency, frequency, fatigue, etc. The brain is an amazing organ, and the brain is driven to establish homeostasis; that is ultimately the purpose of these output responses.. The question is, “what is out of balance in your life, and how can you change that?”
Carolyn Vandyken, PT
Pelvic Health Solutions
Blog # 2: Finding Hope: Walking is the medicine
Like so many people today, I struggle with a chronic medical condition. The one I have has affected my mobility, forced me to leave work, and struggle on a daily basis just to handle the basic requirements of living. When just moving across a room leaves you soaking in perspiration and exhausted, there seems to be little hope for a meaningful life. I have tried a number of remedies, both traditional and alternative. What I have learned along the way has not only dramatically improved my life but also given me hope. I am still working on a full recovery. The result is that I am so much better than I was but not as well as I would like to be.
My physiotherapist, Carolyn Vandyken shared with me that no matter the body’s output, whether it is pain, weakness or spasms, the answer is exercise. Since my body’s main ‘output’ is spasms, I really, really struggled with any aerobic exercise. As soon as I started exercising, my body would begin to spasm. It would stop me in my tracks. Carolyn explained that it was the brain’s natural job to protect the body and so it would signal the muscles to spasm even though there was no damage actually being done. What had become the mind’s natural design to protect me, now continued as a learned function that was no longer required. That bit of information gave me real hope as I began to understand that I could move and not be causing further problems for myself. She taught me a few sayings to repeat to myself, but the one that stuck with me was ‘It hurts but it is not harming me’. This really worked for me, but only because Carolyn had taken time to explain to me how the nervous system worked.
She also taught me that the brain cannot tell the difference between five minutes and six minutes of exercise. She asked me how long I could walk knowing that I would not get any spasms for that length of time. As a starting point, we chose 2 minutes. As soon as the first spasm appeared, I was to stop, otherwise I was reinforcing the pattern of spasms to ‘protect’ my body. The next day, I would walk for one minute longer. I was able to increase the walking on a treadmill up to twenty minutes a day at a rather slow pace. Carolyn also encouraged me to increase one thing at a time, so walking quickly put me into spasm mode right away, so I increased the length of time first, planning to increase the speed once I had reached thirty minutes of spasm free walking on a regular basis.
That also was part of the frustration; consistency. One day I could accomplish my walk and add a minute and another day, as soon as I stepped on the treadmill the spasms would start and I would go away feeling defeated. Carolyn showed me a hand drawn graph, where the journey to wellness was not a straight trajectory from low to high but rather a gradual wavy line, still moving upwards, but with highs and lows along the way. Knowing that the highs and lows were a normal part of recovery gave me hope and helped me to continue the journey and accept that it wasn’t going to be without low points or times when progress wasn’t evident.
Through other treatments that included traditional medicine and other exercises both mental and physical, my situation improved. However, I could never seem to get to a place where aerobic exercise was something I consistently did. I tried everything: schedules, water exercises, walking outside, the treadmill but I could not seem to find a solution that worked long term. I persisted, and one day, I did!
My new solution:
It began with a Fitbit that my husband bought for me for Mother’s Day. It is an Alta Fitbit. It is not without its problems given that I cannot swing my arms since I often use my hands to hold on to furniture as I make my way around the house. However, I can hold onto a chair with my right hand when needed leaving my left arm free to swing. The feature that I love is that it vibrates if I have not taken 250 steps in an hour, prompting me to move. It also comes with an application that allows me to track my food and water intake as well as my steps. It allows me to set goals, records my progress and keeps the records.
I have no connection to Fitbit nor am I promoting its sales. You could do the same with a timer, paper and pencil to record your progress.
The second part:
Carolyn introduced me to a “walking in place” video on youtube. It is in connection with the American Heart Association and the instructor is Leslie Sansone. This is a link that I have bookmarked on my computer: https://www.youtube.com/watch?v=DYuw4f1c4xs
What is great is that I can pause the video at any place and restart it later. The first day I could only do five minutes before the spasms began. Within a short period of time I could do the whole forty five minutes. Now I am finding that some days I have to hold on, only do a few minutes at a time and modify the movements to suit what works for me on that day. Having flexibility to modify how and when I do it has really helped my consistency. Also, I am learning to put “yet” at the end of my sentences: as in “The steps are too complicated for me yet, or I cannot raise my arms above my head yet”. But if I persist, I will be able to do it.
I have learned through experience, that if I miss a few days I will once again experience spasms and that I must gently work back up to the 45 minutes with the full force of energy that I try to incorporate into the exercise. But even that experience gives me hope because it has taught me that within a few days of gentle exercise, it won’t be long before I am back at my best ability. The more days I miss, the more I have to struggle to regain my ability. This is a powerful motivator not to stray too long.
My physiotherapist has generously agreed to let me share with you some of the many treatments and tips she has given me. The following is taken from a book about pain and the brain. She specializes in pelvic health but knows a tremendous amount about the brain/body connection
The following strategies are taken from a book she co-authored called:
Why Pelvic Pain Hurts: Neuroscience Education for Patients with Pelvic Pain.
Written by :
Adriaan Louw PT, PhD, CSMT
Sandra Hilton PT, DPT, MS
Carolyn Vandyken PT, Cred MDT, CCMA (acup)
There are many strategies you can try to help you exercise and stay calm. In fact, books have been written about just that. Here are some helpful strategies people have used over the years.
- Start small: Start with three to four minutes of exercise. Every two days, add a minute until you reach 15-20 minutes of regular exercise. Walking is an easy option. You can substitute walking with biking or swimming. Remember that increasing your heart rate is the main goal.
- Make a plan: On paper, write down a plan that includes where, when and how long you will exercise.
- Take rests: Don’t exercise every day. Schedule days off. Aim to exercise five days a week.
- Get a partner: Exercise with a friend, neighbor or family member. Explain your plan so they can help (My sisters are my partners and we keep in contact by phone. They don’t have the same challenges I have but they want to increase their aerobic activity for health reasons as well)
- Back off: Many people in pain are doing too much exercise. Pace yourself.
- Get away: Avoid working out at home. Get outside in the fresh air. If it’s cold, walk in the mall. Home is usually filled with stressful issues, such as housework and family needs.
(I tried but this didn’t work for me. My sister likes the push she gets from exercising with others. She doesn’t have the mobility challenges I have. Find what works for you)
- Log your progress: Start a log book or journal. After each workout, write what you did. Record some positive thoughts about your workout, your day and your progress.
- Set a goal: Be specific. It may be to complete a loop around the park or to participate in a charity walk by a certain date. Plan and prepare.
- Breathe deeply: When you exercise, remember to breathe. Take nice big breaths. The mixture of blood and oxygen flushing through your body will help calm your nerves and excite your brain.
Finally, there is a youtube video that Carolyn also introduced to me. It is an amazing, even shocking, source of research about exercise that cannot help but influence your attitude toward a more active lifestyle. It is called 23.5 hours.
https://www.youtube.com/watch?v=3F5Sly9JQao It has been a year since I started with the walking in place video and I am still at it. I finally found something that works for me.