Prescription for Pain
Sunny Roller, MA, Michigan
New pain, muscle weakness and general fatigue are common complaints of post-polio individuals who fought polio once and won, but are now reluctantly having to return to rehabilitation after a 30-40 year reprieve.
Along with muscle weakness and fatigue, new pain is the most common complaint of people with the late effects of polio. It is what drives them to the doctor's door, causes sleepless nights, and eats away at their ability to get through a productive day. My pain came in dual form. It was both physical and emotional, each form feeding the other and gradually increasing over the course of four years, to finally overwhelm me.
It became something I could not just get through by minimizing, like I always had in the past. It is hard to clearly remember, but I must have continually lived in some kind of pain since contracting polio when I was four years old. During the acute stages, I was completely paralyzed - only able to move one finger. The physicians gave me ten days to live.
For the next ten years, I worked with the determination of an Olympics-bound athlete coming back from that near-death experience. "No pain, no gain," the voices would say. My parents became my primary coaches, providing the encouragement, resources, and training that I needed. How, I wonder, did I assimilate the emotional pain they inadvertently must have communicated at the loss of a healthy child? They were my private rehabilitation team. Nine months in a rehabilitation hospital-school. Ten years of exercise routines and five major orthopedic operations.
As I grew, I know they gave me morphine in the hospital, but I do not clearly recall the pain it alleviated. I was scrutinized by tall, well-tailored doctors in gray suits and shiny black shoes once every month. At the age of fourteen, I was happy to say good-bye to their alert somber faces and objective eyes. I remember hating to get new shoes because I had to stuff crooked feet into straight shoes. It was the same with new braces which pulled and pinched and poked in new places. But I did manage it all with success, often ignoring the irritations and riding along on my personality.
I went to suburban public schools. I was mainstreamed. I graduated from a state university in 1969. I taught high school college-prep English for ten years, then supervised a university co-ed dormitory for three years while working on my Master's degree. Suddenly, I started to cave in. It was thirty years after I had contracted polio: I was 35. I did not understand what was happening to me. I started to feel a tremendous amount of new pain in my back and left hip area when I would sit up in bed every morning. All of my physical activity, including standing, sitting, walking or reclining, became more and more uncomfortable and I was losing much stamina. I resigned from my job at the university because of the pain, weakness, overall exhaustion and a pervasive new sense of inadequacy.
After seeing five medical specialists who each told me something a little different, and nothing that seemed conclusive, I was referred to the Post-Polio Clinic at the University of Michigan Medical Center. The following evaluation and prognosis became the ones that I intuitively accepted: post-polio syndrome, inflamed tendons in left hip area, bad scoliosis, rotated pelvis, some arthritis, some deformities, lose ten pounds, take aspirin for musculoskeletal pain, go to physical therapy, use an electric cart, get a right shoe lift, conserve energy.
When the physician told me all the things that were "wrong" with me, my tears revealed relief in that formal knowledge, and initiated my submersion into a whole new set of feelings that I had never experienced with such intensity. As unique as our distinguishable disabilities are, so the intensity of our feeling will vary. Nevertheless, the late effects of polio generate similar emotional responses that do not go away quickly.
One of the first and strongest emotions that I felt when the doctor told me to "slow down ... things weren't going to get better ... expect a 1% per year muscle loss ... make adjustments," was an overwhelming feeling of emotional pain. Why me? Again? Emotional pain layered on top of physical pain. What did I do to deserve this?
There is an amount of grief accompanying a new sense of loss. So much of me ... gone. Not only had I lost some of my energy level, strength, stamina and functioning; I was starting to lose my earning power. I could never be the yuppie that I always wanted to be. Would I ever own a house? Would I ever be able to earn enough money? How can this be? I was one of the golden, talented, socially-aware baby-boomers! I felt tricked, and hence, very, very sad. I also felt that I had lost my sense of identity. I had been a teacher and I was proud of it. Would I be able to endure a six-hour day, trying to stimulate and motivate the typical American teenager? I was lost and my sense of self-worth plummeted to almost zero. Who am I now? Suddenly I was just a sick person, a needy woman with a lost capacity for giving. Would I look so funny that they would not want to be seen with me? Would I have any sex appeal?
Fear becomes an insidious intruder. What is going to happen to me physically in five years? Ten years? What will it really mean to lose 1% a year? Will I lose the use of my right hand? How will I write? I love to write. Will my respiration go next? I do not know. Financially, what is going to happen? Will I be able to get disability pay? Is insurance going to cover me?
Another strong feeling that I have is guilt. Now that I am more disabled, how much more of an imposition will I be to those around me? I am already more of a burden than I would choose to be: people have to help me constantly, in spite of an achieved amount of independence on my part. Surpassing all of those feelings is anger, sometimes qualifying as rage. Why did nature do this to me? It is not fair.
Due to these unwanted complications that I am trying to deal with, I feel very high levels of stress. There are so many new changes and adjustments to make. There are so many complexities to deal with physically, emotionally, intellectually and spiritually. I feel ashamed, vulnerable and defensive because I have been weakened. Yet, I still need to maintain some pride. I am also resistant to any new plans for rehabilitation. I do not want to walk back into a hospital. I was in hospitals for 14 years and they were sad places filled with trapped people in pain.
Pain was all over, inside and outside. The worse I felt, the harder I fought. The more I fought, the harder I was on myself. "What is wrong with you?" "Get going!" "Quit thinking about yourself so much!"
But today, six years later, the overwhelming pain has subsided. Within nine months of my physical therapy and getting a shoe lift, I was back to minimal, manageable physical irritations. With the help of several kind, patient, respectful professionals and dear friends, I have gradually renewed and found relief from many of the self-doubts and much of the self-abuse. My objectivity is restoring itself. The emotional pain layered on top of physical pain may never go away completely for me, but it can be managed. And that is great to know. There is hope and there is help. One must actively choose to be hopeful and assertively seek that help for it is out there – waiting to be discovered.
©Post-Polio Health (ISSN 1066-5331), Vol. 6, No. 4, Fall 1990
Pain can be due to any number of factors ranging from very benign to quite serious. Polio survivors who are experiencing pain should undergo a comprehensive medical evaluation to diagnose its cause. Pain is most often due to overuse of muscles, tendons, ligaments and/or joints, and primary interventions are directed at alleviating or eliminating the overuse factors.
Pain syndromes associated with the late effects of polio include muscle (myogenic) pain and cramping. Fasciculation, often described as a crawling sensation, are exacerbated by physical activity, stress and sometimes cold weather. Typically, myogenic pain and fasciculations will decrease or disappear entirely with rest. Gentle stretching may be useful, but must be performed judiciously in situations when there is a greater functional benefit with tighter tendons (Gawne, 1997). Heat and gentle massage are useful adjunctive treatments as well. Fibromyalgia and its associated pain have been noted to be more prevalent among polio survivors (Trojan & Cashman, 1995).
Strain injuries are not uncommon and affect the muscles, tendons, bursa and ligaments, and may occur chronically or acutely. Pain due to strain may be related to posture and/or occur as a result of overuse of the arms, shoulders and lower extremities (Smith & McDermott, 1987). Pain radiating from the shoulders is a result of supraspinatus or biceps tendinitis. Elbow pain is common, as is knee pain. Genu recurvatum (back knee) is a condition in which, because of weakness of the ligaments and muscles around the knee, there is progressive backward deformity of the knee. To control or eliminate strain injuries and symptoms, the joints should be protected by bracing or by a decrease in crutch use.
Another frequent cause of pain is degenerative joint disease. Degenerative changes, also in the spine, are exacerbated by weakened muscles and worsened by walking on unprotected joints with unusual gait movements and abnormal stresses. They can be lessened by improving support with appropriate bracing, adaptive devices (canes, crutches, corsets), special seating and postural modification.
Other pain problems that can occur are secondary nerve compression syndromes, commonly at the wrist and occasionally at the elbows (Werner & Waring, 1989). Median nerve compression, at the wrist (carpal tunnel syndrome), and ulnar nerve compression, at the elbow and wrist, are more prevalent in those who are crutch or manual wheelchair users than in the general population. Stress on the wrist and elbow can be reduced by using power carts, three-wheeled scooters, power chairs and/or by using hand splints.
A common site of pain in polio survivors, as a result of using a backward-sideward trunk lurch to substitute for weak hip muscles, is the lower back. Abnormal trunk movements transfer body weight to the small facet joints at the back of the vertebra, and they cannot tolerate the strain. The concentration of back motion at one level in the low back due to a spinal fusion or scoliosis is another cause of back pain.
Weak abdominal muscles also predispose one to chronic back strain and back injury. Abdominal binders, corsets or girdles can help substitute for weak abdominal muscles. Individuals who depend on excessive lumbosacral motion for walking may not tolerate certain corsets.
Physical therapy such as heat, massage, joint mobilization and stretching exercises can help control or resolve low back pain. A change in posture and gait pattern, such as using crutches or a rolling walker, may be needed to prevent recurrence or to resolve chronic pain. Due to increasing muscle weakness and muscle imbalance, some people may need to use a three-wheeled scooter or wheelchair to control this type of chronic pain.
Radiculopathy (disease of the nerve roots) may be the cause of pain in some polio survivors, particularly those who have abnormal posture and/or severe scoliosis, or neck or low back hyperextension due to trunk weakness. A body corset or body brace, if not being worn, may be an option in some cases, as is improved seating position. In other cases, traction and therapeutic modalities (ice, heat, massage, ultrasound, transcutaneous electrical nerve stimulation [TENS] and trigger point injections) may be beneficial. Symptomatic treatment with medications such as nonsteroidal anti-inflammatories may also be helpful, but their long-term use should be avoided. Surgery may also be needed in select severe cases.
Excerpt from PHI's "Handbook on the Late Effects of Poliomyelitis for Physicians and Survivors." © 1999
El dolor en el Síndrome postpolio
El dolor puede ser debido a un gran número de factores que van, desde muy benignos, a decididamente serios. Los sobrevivientes de la poliomielitis que están sintiendo dolor deben hacerse una evaluación médica exhaustiva para diagnosticar la causa del mismo. El dolor es frecuentemente debido al sobreuso de los músculos, tendones, ligamentos, y/o de articulaciones, las intervenciones primarias están dirigidas a aliviar o a eliminar los factores del sobreuso.
Los síndromes de dolor asociados a los efectos tardíos de la poliomielitis incluyen dolor (miogénico) muscular y espasmos. Las fasciculaciones, descritas a como una sensación de tracción, a menudo son exacerbadas por la actividad física, rigidez, y en ocasiones por clima frío. Típicamente, el dolor y las fasciculaciones miogénicas disminuirán o desaparecerán completamente con descanso. Estiramientos suaves pueden ser útiles, pero se deben realizarse prudentemente cuando se den situaciones para un mayor beneficio funcional en los tendones más rígidos. También el calor y el masaje suave son tratamientos coadyuvantes. La fibromialgia y el dolor asociado se han observado más frecuentemente entre los sobrevivientes de la poliomielitis.
Las lesiones por tensión no son raras y afectan los músculos, los tendones, las bursas, y los ligamentos, y pueden presentarse de manera crónica o aguda. El dolor debido a la tensión puede estar relacionado con la postura y/o ocurrir como resultado del sobreuso de los brazos, hombros, y extremidades inferiores. El dolor que se irradia a los hombros es un resultado de una tendinitis de los bíceps o supraespinosos. Es común el dolor en el codo, al igual que en la rodilla. El Genu recurvatum es una condición en la cual, debido a la debilidad de los ligamentos y los músculos alrededor de la rodilla, hay deformidad posterior progresiva de la rodilla. Para controlar o para eliminar las lesiones y los síntomas de la tensión, las articulaciones deben ser protegidas por sujetadores o por una disminución en el uso de las muletas.
Otra causa frecuente del dolor es la enfermedad articular degenerativa. También, los cambios degenerativos, de la columna vertebral, son agravados por la debilidad de los músculos y empeorados por caminar con las articulaciones desprotegidas, con inusuales movimientos al caminar y tensiones anormales. Pueden ser disminuidos mejorando la ayuda con apoyos apropiados, dispositivos adaptados (bastones, muletas, corsés), un sillón especial, y la modificación de la postura.
Otros problemas del dolor que pueden ocurrir son síndromes secundarios por compresión de un nervio, comúnmente en la muñeca y ocasionalmente en los codos. La compresión del nervio mediano, en la muñeca (síndrome de túnel carpiano), y la compresión del nervio cubital, en el codo y la muñeca, son más frecuentes en los usuarios de muletas o sillas de ruedas, que en la población en general. La tensión en la muñeca y el codo puede ser reducida usando silla de tres ruedas o sillas de ruedas eléctricas, y/o usando férulas de mano.
Un sitio común de dolor en sobrevivientes de la poliomielitis, es el resultado de usar un corsé para suplir la debilidad de los músculos de la cadera, en la espalda baja. Los movimientos anormales del tronco transfieren el peso corporal a las articulaciones facetarías de la cara posterior de la vértebra, y no pueden tolerar la tensión. La concentración del movimiento posterior en un nivel de la espalda baja, debido a una fusión o escoliosis espinal es otra causa del dolor de espalda.
La debilidad de los músculos abdominales también predisponen a la tensión posterior crónica y a la lesión dorsal. Los corsés, o las fajas abdominales adhesivas pueden ayudar a suplir la debilidad de los músculos abdominales. Los individuos que dependen de un excesivo movimiento sacrolumbar para caminar, pueden no tolerar ciertos corsés.
La terapia física para el calor, masajes, movilidad de articulaciones, y ejercicios de estiramiento, puede ayudar a controlar o a resolver el dolor de la espalda baja. Un cambio en el patrón de postura y del caminar, así como usar muletas o una andadera rodante, pueden ser necesarios para prevenir la recurrencia o resolver el dolor crónico. Debido a la creciente debilidad del músculo y al desequilibrio muscular, algunas personas pueden necesitar una silla de tres ruedas para controlar este tipo de dolor crónico.
La radiculopatía (compresión de las raíces nerviosas) puede ser la causa de dolor en algunos sobrevivientes de la poliomielitis, particularmente los que tienen una postura anormal y/o escoliosis severa, o la hiperextensión posterior del cuello o la espalda baja, debido a la debilidad del tronco. Un corsé o una abrazadera, si no se está usado, puede ser una opción en algunos casos, al igual que una mejora en la posición al sentarse. En otros casos, la tracción y modalidades terapéuticas (hielo, calor, masaje, ultrasonido, estimulación eléctrica transcutánea del nervio, y agujas subcutáneas) pueden ser benéficas. El tratamiento sintomático con medicamentos como antiinflamatorios no asteroideos (ver Medicación en el Síndrome Post-Polio) también pueden ser de provecho, pero su uso a largo plazo debe ser evitado. La cirugía puede también ser necesaria en casos severos seleccionados.
"Manual Sobre los Efectos Tardíos de la Poliomielitis, para Médicos y Sobrevivientes," translated by Jorge Federico Eufracio Téllez