Pain-Free Living Magazine January 2018

DYSTONIA Mysi05/Shutterstock

48 Pain-Free Living ❙ DECEMBER 2017/JANUARY 2018 W H AT I S DYSTONIA? Life impact and chronic pain treatment perspectives

A patient and health twisting, and/or abnormal postures. movements, abnormal postures, and Muscle contractions can be sustained pain. The affected muscles can feel like coach discusses a or intermittent and sometimes include a charley horse that never goes away. painful neurological a tremor. Dystonia can affect any part Dystonia does not impact cognition of the body, causing varying degrees of or shorten a person’s life span. However, movement disorder disability and pain from mild to severe. given the severity of symptoms that In some cases of dystonia, people some people experience, quality of that may affect more have muscles that involuntarily contract life can greatly diminish. There is cur- people than we realize with no change in physical appearance. rently no cure available, so treatments However, pain is almost always present are limited to minimizing symptoms. BY TOM SEAMAN regardless of physical presentation. Approximately 500,000 people are esti- People often describe their muscles as mated to have dystonia in North America WHEN WE HEAR the terms “Parkin- feeling like tightropes. and over 1 million worldwide. These son’s disease” or “essential tremor,” A good way of looking at dystonia figures may be low when considering we can usually form a picture in our is in terms of muscle pairs. During those yet to be diagnosed and those who mind because we have heard of these normal movement, when one muscle have been misdiagnosed. Surprisingly, conditions before. The term “dystonia,” contracts, its opposing muscle relaxes. dystonia is more common than Hunting- however, usually leaves people scratch- For example, when we contract/flex our ton’s disease, muscular dystrophy, and ing their head. It sounds more like a bicep, our tricep coordinates by relax- ALS (Lou Gehrig’s disease) combined, small European country than it does a ing. When we extend our arm, our tricep yet many are unfamiliar with it, as educa- health condition. However, it is actually contracts and our bicep relaxes. Quad- tion and awareness are limited. the third most common neurological riceps and hamstrings are examples movement disorder. of other muscle pairs that work in the DYSTONIA CLASSIFICATIONS Dystonia is characterized by uncon- same fashion. In dystonia, opposing There are multiple forms of dystonia trollable, involuntary muscle spasms muscles involuntarily contract simulta- and symptoms are highly variable. It and contractions, repetitive movements, neously, which is what causes awkward may affect a single area of the body or

DECEMBER 2017/JANUARY 2018 ❙ Pain-Free Living 49 • TASK-SPECIFIC DYSTONIA “Over a period of ten months, my pain increased is a focal dystonia that occurs when undertaking a repetitive activity. An exponentially to the point that I could barely example is writer’s cramp, which affects function. It felt like there was a power drill in the the muscles of the hand and sometimes the forearm, and only occurs during base of my skull that radiated down my neck.” handwriting. Musician’s dystonia is a term used for dystonia affecting one’s multiple muscle groups. Symptoms may forward, or backward. Many people ability to play an instrument or perform. include a cramp or a tendency for the have a combination of these head/ It can involve the hand in keyboard or affected part of the body to tighten and/ neck positions. string players, the mouth and lips in or tilt or turn to one side, as in the neck • BLEPHAROSPASM involves invol- wind players, or the voice in singers. for example. In the case of dystonia in a untary contraction of the muscles con- lower limb, a foot may curl and/or leg trolling eye blinks. Usually both eyes are Other forms of dystonia include may drag, and coordination problems affected. Symptoms include increased • GENERALIZED DYSTONIA, with the upper and lower torso may blinking, and spasms may cause the which affects most of the body; be evident. In the face and head, eyes eyelids to stay open or closed. • MULTIFOCAL DYSTONIA, may blink rapidly and uncontrollably, • CRANIO-FACIAL DYSTONIAS are which involves two or more unrelated or close entirely. Symptoms may also forms of focal dystonia that affect the body parts; include a tremor or difficulty speaking. muscles of the head, face, and neck. Oro- • SEGMENTAL DYSTONIA, which Forms of dystonia are based on the mandibular dystonia affects the muscles affects two or more adjoining parts of body regions affected. Focal dystonia is of the jaw, lips, and tongue. This may the body such as the face and neck, localized to a specific part of the body. cause difficulty opening and closing neck and upper arm, and trunk and The most common focal dystonias the mouth; speech and swallowing may leg muscles; and are cervical dystonia, blepharospasm, also be affected. Meige syndrome is a • HEMIDYSTONIA, which involves cranio-facial dystonia, and task specific term used to describe oromandibular the arm and leg on the same side of dystonia, all described below. dystonia accompanied by blepharo- the body. • CERVICAL DYSTONIA is where spasm. Spasmodic dysphonia, also the muscles in the neck that control the called laryngeal dystonia, involves the Although dystonia is not considered position of the head are affected, caus- muscles that control the vocal cords, a progressive disorder, over time, symp-

ing the head to turn or pull to one side, resulting in strained or breathy speech. toms may become more severe in some Photos courtesy Seaman Tom

50 Pain-Free Living ❙ DECEMBER 2017/JANUARY 2018 Years of sedentary living suffering or carbon monoxide poisoning, and When this region is stuck in full throttle, from dystonia, chronic pain, and physical or emotional trauma. neurons can change their connections depression resulted in massive with other neurons, or die prematurely. weight gain. After making major LIFE IMPACT OF DYSTONIA It was hypothesized that these lifestyle changes, Tom lost 150 AND CHRONIC PAIN changes make it difficult for people pounds. While he shrunk, his People with dystonia and chronic pain to concentrate, solve problems, make nephew grew! not only suffer with unrelenting agony, decisions, or be in a good mood. A they have difficulty sleeping, working, person in chronic pain is impaired in a people. My initial symptoms progressed socializing, driving, and performing similar manner to those who are multi- over a period of ten months, from a basic everyday tasks. They are also tasking without ever getting a break. minor annoyance to severe disability more prone to anxiety and depres- With so much overstimulation, it is with forceful, involuntary muscle con- sion. Researchers have reported that difficult for the brain to rest and func- tractions and pain unlike anything I had brain activity in patients with chronic tion optimally. ever experienced. Conversely, some pain is different from those who do A symptom frequently experienced people have symptoms that manifest not have chronic pain. In a healthy is anxiety. Researchers observed that but never progress, and sometimes brain, all regions are in a state of equi- patients in chronic pain have reduced improve. I attribute my steep and rapid librium. When one region is active, brain activity in the areas that con- decline to improper treatments prior the others quiet down. In people with trol the response to pain. They believe to a diagnosis, but I can’t say for sure chronic pain, the prefrontal cortex, the that reduced control over pain signals if my symptoms would have wors- location for cognitive, emotional, and causes the brain to become extremely ened otherwise. behavioral functioning, is always active. vigilant in anticipating future pain. This helps explain the heightened levels of WHAT CAUSES DYSTONIA? anxiety frequently experienced by those In most cases, the specific cause of dys- living with chronic pain. In my work as a tonia is not known, but it is thought to Daily coping health coach, many of my chronic pain be due to a chemical imbalance in the strategies clients are hypervigilant. In other words, brain involving acetylcholine, norepi- they are often stuck in fight, flight, or nephrine, serotonin, GABA (gamma- TREAT PROBLEMS as challenges freeze mode, which prevents healing. aminobutyric acid), and dopamine. to overcome. Researchers also believe that reduced When these neurotransmitters are control over pain signals contributes to malfunctioning, it can affect how the TAKE PRIDE in your depression. It causes increased emo- brain generates commands to move achievements. tional reaction to future experiences certain body parts. In most cases, no of pain, which contributes to a sense brain abnormalities are visible using LEARN about your condition and of hopelessness in being able to over- magnetic resonance imaging (MRI) take responsibility for it. come pain. This is consistent with other or other diagnostic testing. A proper research that has found that people who DEFINE SUCCESS as taking good diagnosis is made by an experienced are depressed have reduced ability to care of yourself. physician; typically, a neurologist spe- control their emotional state. cializing in movement disorders. ACCEPT the illness and reject It is clear to see how dystonia and Dystonia is divided into three groups: “why me?” questioning. chronic pain can dramatically impact idiopathic, genetic, and acquired. Idio- quality of life, contributing to the loss of pathic dystonia refers to dystonia that BE WILLING to use all available one’s identity, abilities, and choices that does not have a clear cause. Genetic resources for help. many take for granted. You are almost dystonia refers to people who carry a always being tested to the limits, yet defective gene from one or more par- LIVE for today, one day at a have firm boundaries due to limitations ents. However, it does not follow that if time—not in the past or the future. these conditions place upon you. one inherits a defective gene they will When my cervical dystonia symp- KNOW that you are not defined develop dystonia. Acquired dystonia toms began, I had little to no pain in my by what you can or cannot do. results from environmental or other neck or back, and was able to live a nor- damage to the central nervous sys- ENJOY small pleasures when you mal life. Over a period of ten months, tem. Some causes of acquired dystonia recognize them. my pain increased exponentially to the include birth injury, such as hypoxia point that I could barely function. It felt and neonatal brain hemorrhage, infec- KNOW that your value and like there was a power drill in the base tions, reactions to certain recreational worth have not decreased due of my skull that radiated down my neck

Photos courtesy Seaman Tom and prescription drugs, heavy metal to your condition. into my shoulders. I had great difficulty

DECEMBER 2017/JANUARY 2018 ❙ Pain-Free Living 51 Neutral or positive sensory sensations travel through the nervous system faster than painful messages. This means that if soothing sensations and painful sensations reach the “pain gate” at the same time, the pleasant sensations will prevail. sitting or standing for more than ten many treatments over the years and it make the conscious decision to make minutes at a time. I lived on the floor is always changing based on my needs tragedies out of them. We can either in writhing pain for years, unable to do at the time. resist or we can accept challenges. If much of anything without assistance. Regardless of one’s treatment we choose to view challenges as oppor- It was a miserable existence and life as approach, an important component of tunities for personal growth, this can I knew it was over. self-care and symptom management be a driving force for positive changes When numerous doctors could not involves regulating our daily schedule and healing. ■ provide an explanation for my bizarre, so that we have the right balance of painful neck postures and extreme mus- physical activity, rest, and social inter- Tom Seaman is a Certified Professional cle spasms, I researched the internet action. An interesting and helpful fact Life Coach in the area of health and like crazy and diagnosed myself with to remember is that neutral or positive wellness and author of the book Diag- dystonia, which was later confirmed sensory messages travel through the nosis Dystonia: Navigating the Journey, by a neurologist. After many ineffective nervous system faster than painful a comprehensive resource for anyone treatments and years of physical and messages. This means that if sooth- suffering with any health challenge. mental suffering, I finally learned a ing sensations and painful sensations He is also a motivational speaker, variety of symptom management proto- reach the “pain gate” at the same time, health blogger, chronic pain and cols that greatly improved my life. I also the pleasant sensations will prevail, dystonia awareness advocate. Tom lost 150 pounds that I gained due to my blocking the slower, painful ones. volunteers for the Dystonia Medical sedentary lifestyle from chronic pain, With this in mind, one way of revers- Research Foundation (DMRF) as a anxiety, and depression. It is with years ing the course of pain is to find things support group leader and for WEGO of perseverance, patience, acceptance, that create consistently reliable pleas- Health as a patient expert panelist. He an assortment of treatments and thera- ant experiences that compete success- is a member of Chronic Illness Blog- pies, a positive attitude, and enthusiasm fully with pain. This might include gers Network. To learn more about for what I am still able to do, that I am massage, acupuncture, a good movie Tom, sign up for his free health news- living a fulfilling life again. or book, quality time with family and letter, and get a copy of his book, visit friends, sex, meditation, prayer, exer- www.tomseamancoaching.com. Follow TREATMENTS AND TREATMENT cise, and music; whatever you find to him on Twitter @Dystoniabook1. PERSPECTIVE be a pleasant experience. As with chronic pain, there is no cookie No one is immune to the challenges cutter approach to treating dystonia, of life. At some time or another we which includes physical therapy, oral all endure tough experiences. When medications, botulinum toxin, brain adversity comes, how we respond to surgery, and literally everything in it determines between. The challenge for many is what happens that there is little uniformity in how next. Life expe- dystonia manifests, making it difficult riences become to diagnose and treat. I have utilized tragedies if we

52 Pain-Free Living ❙ DECEMBER 2017/JANUARY 2018