Understanding Post-Polio Syndrome:
Post polio syndrome is a "second" disability affecting a large number of polio survivors. If you had polio and are experiencing unexplained symptoms, you may have the late effects of polio, often referred to as post polio syndrome.
Post polio symptoms can appear in the muscles that were affected at the time polio was contracted or in previously unaffected areas. It can appear at any time and is frequently triggered by a trauma such as surgery, death in a family, emotional upheaval, or accident.
Reportedly, there are 1.6 million polio survivors in the United States, many of whom will experience the late effects of polio.
Understand that:
- Post polio syndrome is not a recurrence of the virus
- The rate of decline can be very slow if properly treated
- Unexplained symptoms do not mean that you are imagining things
- It can strike 10 - 50 years after the polio attack
- Your participation in the treatment is a must
- Information and support are available
- Support groups are vital links to educational information.
Symptoms:
- Unaccustomed fatigue-- either rapid muscle tiring or feelings of total body exhaustion
- New weakness in muscles-- both those originally affected and those unaffected
- Pain in muscles and/or joints
- Breathing difficulties
- Function decline
- Depression
- Muscle spasms/twitching
- Sleep problems (Sleep Apnea)
- Swallowing problems (Dysphagia)
- Weakness and muscle atrophy
- Anxiety
- Non-recognition/denial of symptoms by medical professionals
As a first step, a general medical evaluation should be made to exclude other conditions, which may mimic post polio syndrome. Further diagnosis and treatment by a specialist may then be necessary. Some of the specialists dealing with post polio syndrome are neurologists, pulmonologists, physiatrists, and orthopedists.
Do's and Don'ts - Take time to rest. - If you are experiencing 'increasing' muscle weakness, exercise only under the supervision of a knowledgeable physician. - Eat a good, low fat diet. - Take note of any new symptoms, plus clear or gradual changes. - Get enough exercise to prevent disuse atrophy, but not enough to produce overuse damage. - Consider possible adaptations to you lifestyle; even minor adjustments, like changes in hobbies or modes of transportation, can help. - Do not assume that every physician fully understands post-polio problems. Educate yourself and never hesitate to ask questions. - Maintain a positive attitude toward your health. - Accept change; adapt and never equate your self-worth with physical disabilities. - Take common colds very seriously. - Avoid stimulant laxatives. - The current recommendation is that all post-polios have a complete medical evaluation covering the three major areas affected by polio - neuromuscular, circulatory and respiratory. - Swimming in warm water is the best conditioning exercise. - Discontinue any exercise that causes pain or weakness. - You should avoid narcotics. - Aspirin or Ibuprofen should be used for muscle or joint pain. - Rest is the best known treatment for aching muscles. - Get flu vaccinations according to Public Health Service guidelines. - You must learn to conserve energy.
Pain in Post-Polio Syndrome
Symptoms of Post-Polio syndrome include fatigue, new weakness, and pain in muscles and joints. Chronic pain is the second most prevalent symptom reported and frequently is the most difficult to treat. Improvement in the evaluation and treatment of pain can significantly improve comfort and restore function many of the problems appear to be related to overuse of weak muscles along with abnormal joint and limb biomechanics.
To facilitate the diagnosis and treatment of pain, a classification that divides the pain into three classes had been developed:
1) Post-Polio Muscle Pain
2) Overuse Pain
3) Biomechanical Pain
Post-Polio Muscle Pain occurs only in muscles affected by polio. It is described as either a deep superficial aching pain, which many survivors say is similar to the muscle pain they experienced during their acute illness. It is exacerbated by physical activity and stress and cold.
Overuse Pain includes injuries to soft tissue, muscle, tendons, bursa, and ligaments. Common examples are rotator cuff tendinitis and deltoid bursitis. Fibromyalgia with its associated symptoms is another cause of muscle pain that has similar symptoms.
Biomechanical Pain includes degenerative joint disease (DJD), low back pain or pain from nerve compression. Survivors who walk develop DJD in the lower extremities because of years of ambulating on unstable joints. Those who use wheelchairs, or canes, crutches, or walker are prone to DJD in the wrist and shoulders.
The evaluation of post-polio pain requires careful investigation of all aspects of their pain. Among the typical questions asked are "What makes the pain better? worse?" which treatments are helpful and by whom are they given is important.