The following was first published in the February 1999 Rancho Los Amigos Post-Polio Support Group Newsletter and is reprinted here with kind permission of the author, Mary Clarke Atwood and the Rancho Los Amigos Post-Polio Support Group.

IN-PAGE INDEX

Additional Resources - Conclusion - Criteria for Diagnosing PPS - Drugs to Use with Caution in PPS Medications for Fatigue and/or Weakness - Pain Control - Recommendations for Fatigue Control Research - Risk Factors - Treatment of PPS Fatigue - What is Post-Polio Syndrome?

PPSC DISCLAIMER

Coping with Fatigue of Post-Polio Syndrome
with Susan Perlman, M.D.
Reported by Mary Clarke Atwood
Rancho Los Amigos Post-Polio Support Group Newsletter - February 1999
Editorial assistance by V. Duboucheron, S. Perlman

Neurologist Dr. Susan Perlman is the Director of the Post-Polio Clinic at the University of California, Los Angeles (UCLA) Medical Center. She is part of a team approach to the treatment of Post-Polio Syndrome (PPS). In addition to directing the Polio Clinic, Dr. Perlman also serves as Associate Clinical Professor of Neurology, and Director of Neurogenetics Clinic, UCLA.

This report reviews the knowledge base of PPS including Criteria for Diagnosing PPS, plus information on the new single fiber EMG studies, and recommendations for fatigue control and treatments. Included is a copy of Dr. Perlman's chart "Medications for Fatigue/Weakness". This chart includes a list of medications, dosage, side effects plus non-drug choices for treating PPS fatigue. In addition, there is a list of drugs to use with caution in PPS. A polio survivor might be able to have better control over fatigue by applying some of these suggestions.

What is Post-Polio Syndrome?

PPS is a true new loss of nerve/muscle activity. A patient may experience fatigue, weakness, atrophy, and secondary pain as a result of this loss. These symptoms and signs can be mimicked or made worse by other neurologic or medical conditions. Surviving polio doesn't mean you are immune to other diseases. Polio survivors also need to be alert to the medications they take as well as to possible side effects of medications.

There are other late-effects of polio that can be unrelated to changes in the motor unit. These are:

• muscle spasm and pain from chronic overuse or injury
• ligament laxity and pain from poor muscle support of joints
• joint or spine arthritis from chronic wear and tear

These problems can be made worse by:

• wrong equipment
• wrong exercise or activity
• wrong body mechanics

There is not full agreement as to the causes of PPS but there is agreement that the problem is at the nerve/muscle junction. (The problem is not in the spinal cord and it is not primarily in the brain.)
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Risk Factors

Why are only about 60% of polio survivors from the 40s and 50s experiencing PPS? A study* by Cashman and Trojan showed that the survivors most likely to develop PPS had initial motor unit involvement to a greater degree, i.e. people who had more severe original polio, were totally paralyzed, or needed ventilatory support seemed to be at higher risk of developing post-polio problems. The aging process as well as overuse were also important factors in predicting PPS. (Overuse was defined as activities that caused muscle pain that persisted.) People who ignored that pain, and pushed through fatigue and pain for many years before they realized they had a problem, seemed to have more problems later in life.

* Predictive Factors for Post-Poliomyelitis Syndrome - Trojan, Cashman et al 1994

Polio survivors may begin developing new weakness, fatigue and pain on average about 30 years later but these symptoms could occur as early as 15 years after the onset of acute polio or as late as 45 - 50 years past onset.

A report by Dalakas and Hallett states that risk factors more frequently associated with earlier onset of PPS are:

1. severity of residual disability
2. residual bulbar or respiratory signs
3. higher age at onset of acute polio
4. (possibly) recent falls and injuries

Although some people think a survivor's immune system might have been affected by polio, this has not been proven as a factor causing PPS. There is also no firm evidence of a persistent viral infection of polio being present.

What triggers PPS? Overuse, aging, and pushing through pain are factors but there may also be other neuromuscular factors that are not yet understood. Stress erodes performance and can make everything worse.

The good news is that a Mayo Clinic study * of 50 polio survivors showed that those subjects did not experience a major loss of nerve and muscle function during the preceding 6 year period. However, it did show a small but significant decrease in vital capacity (greater than expected for age).

*Late Effects of Paralytic Poliomyelitis in Olmsted County, Minnesota - Windebank et al ABSTRACT
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Criteria for Diagnosing PPS

In order to diagnose PPS, a patient must have:

• confirmed history of paralytic polio (established by history, physical exam, and EMG)
• recovery followed by an extended period of stability
• gradual or abrupt onset of new weakness in previously affected and/or unaffected muscles
• EMG evaluation that demonstrates changes consistent with previous polio

If prior polio is not confirmed on the standard EMG study, there is a new test being done at some centers, including UCLA. This test is the Single Fiber EMG study and can be used to confirm a history of polio when there are questionable results following the standard EMG. The Single Fiber EMG study uses a finer needle and measures a single nerve ending instead of the standard EMG which measures the average of a group of nerve endings.
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Pain Control

The first thing to be addressed should be pain control. In order to preserve muscle function a polio survivor's goal should be to live PAIN FREE. If pain is present most of the time, any pain medication should be taken by the clock, not by the severity of the pain (rewarding the pain).

Besides medications, there are many non-drug choices for pain relief including acupuncture and magnets. If the site of the pain is in the pain receptors of the skin, muscle, or joint then non-drug treatment choices might be hot packs, ice packs, ultrasound, stretching, massage, acupressure, or biofeedback. Ice packs and TENS devices are choices for treating incoming nerve pain. Other pain relief choices are hypnosis, relaxation training, distraction (keeping busy), and cognitive therapies.
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Recommendations for Fatigue Control

PPS fatigue can be due to primary motor-unit (nerve/muscle) weakness. But it may also be caused by other neuromuscular diseases as well as other medical or metabolic conditions.

In order to have better control over the symptoms of fatigue, PPS individuals are given these recommendations:

• protection of weakened muscles from overuse by use of appropriate equipment (braces, canes, power chairs, etc.)
• reduction of overall level of activity
• avoidance of excessive fatigue
• appropriate gentle exercise under supervision when disuse is suspected. (Dr. Perlman suggests gentle aerobics that are resistive, not repetitive, when appropriate.)
• weight loss, when appropriate

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Treatment of PPS Fatigue

There are a number of medications as well as non-drug choices for treating fatigue/weakness. In addition to the items in the chart, some patients are finding some relief from fatigue by using:

• drugs from a class called Selective Serotonin Re-uptake Inhibitors (SSRIs). These antidepressants (in the Prozac family) are being used successfully in some patients for treatment of fatigue which can also affect the brain. (Depression may be a result of fatigue and/or chronic pain.)
• the food supplement L-Carnitine

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Drugs to Use with Caution in Post-Polio Syndrome

• Central nervous system depressants:
  • narcotics
  • sedatives
  • tranquilizers
  • sleeping pills
  • general anesthetics, e.g. ether
  • alcohol
• Muscle relaxants:
  • Valium
  • Soma
  • Robaxin
  • Parafon Forte
  • Norgesic, Norflex
  • Flexeril
  • depolarizing drugs (used in surgery)
  • quinine
  • quinidine
  • procainamide
• Beta blockers -- propranolol
• Calcium channel blockers ---- verapamil
• Diuretics (water pills)
• Laxatives, Kaopectate
• Cholesterol-lowering drugs

Use of Medication In People With Post-Polio Syndrome - Perlman 1999
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Research

Researchers are investigating growth factors in treatment of more severe neuromuscular diseases such as ALS. When significant progress is demonstrated in those patients, the same drugs will then be tested on people with PPS, which is a less severe neuromuscular problem.
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Conclusion

The goals of treatment plans at UCLA polio clinic are for patients to have:

• no pain
• preservation of current muscle function

Polio survivors should be able to have better control over their symptoms of fatigue by applying some of the suggestions in this report. This information can be shared with your personal physician.
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To Contact UCLA Polio Clinic:
Dr. Susan Perlman, Neurologist
Neurological Services
300 UCLA Medical Plaza, Suite B200
Los Angeles, CA 90024-6975
310/794-1195

Reprinted from Rancho Los Amigos Post-Polio Support Group Newsletter February 1999.
© Rancho Los Amigos Post-Polio Support Group Newsletter and Mary Clarke Atwood

The Rancho Los Amigos Post-Polio Support Group meets the 4th Saturday, from 2:00-4:00 in Downey, CA.
Contact: RanchoPPSG@hotmail.com for more information.