Living With ALS

Symptoms & Comfort

Comfort problems deserve attention. Share new, worsening, or distressing symptoms with the ALS care team so the cause and management options can be assessed.

Start with the problem

What problem are you trying to solve?

This question box finds a relevant ALS Hub page. It does not diagnose or provide medical advice.

Pain

Pain can relate to joints, posture, immobility, muscle strain, or other causes. Management may include positioning, equipment, therapy, and clinician-directed treatment.

Ask the ALS neurologist, nurse, physical therapist, or occupational therapist who should evaluate it.

Sources: Practice Parameter update: The care of the patient with amyotrophic lateral sclerosis

Muscle cramps

Cramps may be discussed with the ALS neurologist or nurse. Stretching, positioning, hydration review, and clinician-directed treatment may be considered.

Sources: Practice Parameter update: The care of the patient with amyotrophic lateral sclerosis

Spasticity and stiffness

Spasticity and stiffness can affect comfort, movement, transfers, and sleep. Physical therapy, range-of-motion work, positioning, equipment, and clinician-directed treatment may be part of management.

Sources: Practice Parameter update: The care of the patient with amyotrophic lateral sclerosis

Fatigue

Fatigue may reflect weakness, poor sleep, breathing changes, mood, medications, or the effort required for daily activities. Ask the care team to look for contributing factors and consider energy conservation.

Sources: Practice Parameter update: The care of the patient with amyotrophic lateral sclerosis · Managing Breathing Issues

Drooling and excess saliva

Drooling can relate to difficulty managing saliva rather than producing too much. A neurologist, speech-language pathologist, or other clinician can help assess positioning, swallowing, and management options.

Sources: Practice Parameter update: The care of the patient with amyotrophic lateral sclerosis · Nutrition and feeding tubes

Thick secretions

Thick secretions can make coughing and breathing more difficult. Respiratory and speech-language teams can help assess hydration, humidification, suction, cough assistance, and other options.

Sources: Managing Breathing Issues

Constipation

Constipation can be affected by mobility, hydration, nutrition, medications, and routine. Discuss it with the ALS clinician or nurse rather than changing medications without guidance.

Sources: Practice Parameter update: The care of the patient with amyotrophic lateral sclerosis

Shortness of breath

Shortness of breath needs clinical assessment. It may relate to respiratory muscle weakness, positioning, infection, anxiety, or another cause.

Sources: Managing Breathing Issues · Amyotrophic lateral sclerosis — Diagnosis and treatment

Difficulty repositioning

Difficulty turning or changing position can increase discomfort and caregiver injury risk. Ask physical and occupational therapy about positioning, bed equipment, and safe transfers.

Sources: Mobility in ALS · Practice Parameter update: The care of the patient with amyotrophic lateral sclerosis

Pseudobulbar affect

Pseudobulbar affect involves involuntary laughing or crying that may not match how a person feels. It is a neurologic symptom and is not the same as depression. Discuss it with the ALS clinician.

Sources: Practice Parameter update: The care of the patient with amyotrophic lateral sclerosis · FYI: Cognitive and behavioral changes in ALS

Anxiety

Anxiety can affect sleep, breathing perception, decision-making, and quality of life. A care team may include a clinician, counselor, social worker, or mental-health professional.

Sources: Practice Parameter update: The care of the patient with amyotrophic lateral sclerosis · Coping with ALS

Depression

Depression is separate from ALS-related cognitive or behavioral impairment. Changes in mood, interest, sleep, appetite, or safety should be discussed promptly with the care team.

Sources: Practice Parameter update: The care of the patient with amyotrophic lateral sclerosis · Coping with ALS

Sources & Further Reading

These source cards link directly to the original material. External websites open in a new tab.

This information is for education and does not replace individualized medical advice, diagnosis, treatment, or emergency care.

Last reviewed: 09-30-2026

Medical information should be reviewed periodically as guidance, benefits, and equipment options change.