Amyotrophic lateral sclerosis—commonly called ALS or Lou Gehrig’s disease—is not typically painful. However, pain can occur as a result of the condition’s side effects. Over time, ALS restricts mobility and causes difficulty with breathing and digestion, which can lead to pain.
This article discusses pain that can develop with ALS—its potential causes, and how to manage the symptoms.
Is ALS Painful?
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. 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.
As ALS progresses, it eventually leads to immobility (loss of the ability to move). Immobility can cause significant issues with circulation, leading to pressure ulcers (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.
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.
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).
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.
There are a variety of interventions that can help reduce ALS-related pain.
Nonsteroidal anti-inflammatory drugs (NSAIDs) are frequently used to treat pain from ALS. Common NSAIDs that are available over the counter (OTC) include:
- Aleve (naproxen)
- Bayer, Bufferin (aspirin)
- Advil, Motrin (ibuprofen)
Examples of other non-opioid pain medications include:
- Tylenol (acetaminophen)
- Tapazole (metamizole)
- COX-2 inhibitors
For more severe pain, opioid drugs might be needed. Examples include:
- Fentanyl transdermal patch
- Ultram (tramadol)
Muscle cramps and spasms can be treated with the following:
- Quinine sulfate
- Injection of botulinum toxin
Medication—such as Rilutek (riluzole)—can also be prescribed to help slow the progression of the damage caused by ALS, targeting the side effects of the condition that lead to pain.
Physical therapy can help manage pain from ALS caused by muscles, joints, and immobility. Treatments are specific to the underlying cause of pain.
For example, stretches and gentle range-of-motion exercises can treat muscle cramps and joint pain. This often includes teaching a caregiver how to perform these tasks that may be required several times daily. Therapists can use additional modalities—such as ultrasound, electrical stimulation, and massage—to help decrease pain.
Physical therapists provide training in using assistive mobility devices—such as canes or walkers—as muscles become weaker.
Wheelchair fitting and training are also part of physical therapy as ALS progresses. Therapists work with assistive technology professionals (ATPs) to design wheelchairs with features customized to meet each individual’s needs and reduce immobility-related pain.
Physical therapists also make recommendations for positioning in bed, including turning schedules and when to transition to a hospital bed.
Rehab for ALS
In addition to physical therapy, people with ALS benefit from occupational therapy to address activities of daily living, speech therapy to address swallowing and communication issues, and respiratory therapy for breathing problems.
Complementary therapies are sometimes used along with conventional medicine to help treat conditions such as ALS. Examples include:
Dietary supplements are also sometimes recommended. These may include:
- Vitamins A, C, D, and E
- Thiamine (vitamin B1)
- Riboflavin (vitamin B2)
- Omega-3 fatty acids (polyunsaturated fats with anti-inflammatory properties)
- L-carnitine (a naturally occurring chemical in the body that helps suppress the onset of neuromuscular degeneration)
- Creatine (a supplement that may help protect motor neurons and improve muscle strength)
- CoQ10 (a naturally occurring nutrient in the body with antioxidant properties)
- Idebenone (a synthetic variation of CoQ10 with antioxidant properties)
- Catechins (a compound found in tannins, like green tea, with antioxidant and anti-inflammatory properties)
- Resveratrol (natural phenol compound with antioxidant and anti-inflammatory properties)
Talk to your healthcare provider before adding these interventions to your current treatment plan.
Alternative Treatment vs. Complementary Therapies
Alternative treatments are interventions that are used in place of conventional medicine. Complementary therapies are those that are used alongside typical medical treatments.
Palliative care focuses on relieving symptoms and is provided to improve the quality of life for individuals with serious health conditions, such as ALS. In addition to pain management, palliative care offers emotional support for individuals with the disease and their families and caregivers.
In addition to physical pain, serious illnesses like ALS can cause emotional pain and distress, such as anxiety or depression. Not only can this affect individuals with the disease, but it can also affect their families and caregivers.
Depression is sometimes overlooked for individuals with ALS because it can present similarly to the disease itself.
Both conditions can cause the same symptoms, such as difficulty sleeping, changes in appetite, and fluctuating mood.
If you suspect you are experiencing anxiety or depression related to your ALS, talk to your healthcare provider about your concerns and treatment options. Consider joining a support group for additional encouragement.
While ALS is not a painful disease, specific side effects of the condition—such as muscle weakness, joint stiffness, constipation, use of mechanical devices, and immobility—can all lead to pain. Treatments are specific to the underlying cause of pain and can include medications, physical therapy, and complementary therapies.
A Word From Verywell
ALS causes physical and emotional challenges—particularly as the disease progresses. However, seeking treatment for your pain can significantly improve your quality of life. Talk to your healthcare provider about medical and nonmedical treatment options.
Frequently Asked Questions
Why does ALS make you cry?
Excessive crying can occur with ALS due to a condition called pseudobulbar affect (PSA). This condition causes periods of uncontrollable crying (or laughing). Medications can sometimes help control these emotions.
How does ALS affect your mental state?
ALS can be an overwhelming diagnosis. This condition causes significant physical and emotional problems, which can lead to mental health challenges, such as anxiety or depression. Treatments can include medications and counseling.
Are ALS cramps usually painful?
Muscle cramps caused by ALS can be very painful. However, medications and stretching can help relieve these symptoms.