Pain can occur with ALS. While the condition doesn’t directly cause it, it can happen from complications that develop as ALS progresses.
Muscle and Joint Pain
ALS causes progressive muscle weakness. As this occurs, extra strain is placed on the joints and other muscles that are not yet affected by the disease.
The breakdown of cartilage, which provides padding between bones in a joint, can also lead to joint pain with ALS.1 As joints become immobile with ALS, cartilage breaks down. This can eventually lead to pain as the bones make contact with each other.
Muscle cramping, which occurs most commonly during the early stages of ALS, can also cause severe pain.2
Immobility-Related Pain
As ALS progresses, it eventually leads to immobility (loss of the ability to move). Immobility can cause significant issues with circulation, leading to pressure ulser (sometimes called bedsores).
Pressure ulcers can be extremely painful. These wounds most commonly develop over bony areas of the body—such as the tailbone, elbows, heels, and hips—when a person is stuck in a particular position for extended periods.
Pressure-relieving cushions or mattresses can reduce the risk of pressure ulcers for people with ALS.3
Repositioning schedules—such as turning a person in bed every two hours—are another important intervention to help prevent pressure ulcers from immobility.
Secondary Pain Caused by Medical Treatments
Individuals with ALS eventually become dependent on devices for nutritional and breathing support. Devices such as feeding tubes and respirators can cause pain.
Swallowing and Breathing Issues
ALS causes weakness in the muscles used for swallowing—a condition called dysphagia. When food gets stuck during the swallowing process, it can cause pain.4
Dyspnea (shortness of breath) occurs in the advanced stages of ALS as the disease affects muscles used for breathing. In addition, it becomes difficult to cough and keep the airways clear, which can lead to pain and discomfort.
Breathing can be particularly difficult at night or while lying flat in bed, as internal organs put additional pressure on the weakened breathing muscle (called the diaphragm).5
Constipation
Constipation can develop and cause pain in people with ALS. This can occur from decreased physical activity, poor food or fluid intake, and as a side effect of some medications.6