Pain is a common symptom of amyotrophic lateral sclerosis (ALS), often due to muscle cramps. ALS can also cause pain indirectly through some of its complications. Medications and other therapies are available to help manage ALS pain.

Amyotrophic lateral sclerosis (ALS), formerly known as Lou Gehrig’s disease, is a progressive neurodegenerative condition that causes difficulties with movement.

Many people with ALS indirectly develop pain related to their disease. Pain can have many sources, such as:

  • muscle cramping
  • treatment-related pain, such as a sore throat from a breathing tube
  • pain caused by immobility or extended bed rest

Many treatments are available to help you manage your discomfort and reduce your symptoms.

In this article, we examine potential causes of ALS pain and ways to manage them.

How common is pain in people with ALS?

Pain seems to be common among people with ALS, with various surveys reporting it in anywhere from 48–85% of people. In a 2020 review of studies, researchers reported a prevalence of pain in 65% of people in the 21 studies they examined.

Pain can occur at any stage of ALS, with mixed evidence on whether pain gets worse in the later stages of the disease.

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ALS primarily leads to the degeneration of motor neurons that send electrical messages from your brain to your muscles to move. It usually doesn’t affect the nerves that send pain messages from your body to your brain, but it can still cause pain in many indirect ways.

Muscle pain

ALS can cause painful muscle:

  • cramps, or sudden involuntary muscle movements
  • spasms
  • tightness
  • stiffness

Research suggests that these are among the most reported causes of ALS pain. About 95% of people with ALS report cramps. The frequency and intensity of muscle cramping don’t seem to be related to disease severity.

Other sources of pain

Other sources of pain in ALS can include:

  • constipation
  • pain related to treatments like the placement of a feeding or breathing tube
  • injuries caused by tripping or falling
  • bedsores from extended bed rest
  • muscle weakness that can put more pressure on other muscles and joints and make you more prone to injuries
  • loss of fat under your skin, which might make you more prone to nerve compression
  • joint stiffness and scarring created by capsulitis (frozen shoulder syndrome)
  • swallowing or breathing difficulties, especially when lying flat in bed

Where does ALS pain occur?

The most common sites of muscle cramping related to ALS seem to be the:

  • calves
  • thighs
  • hands
  • feet
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Muscle cramps cause:

  • sudden uncontrollable spasms
  • sharp pain
  • hardening and shortening of your muscle

Some people experience cramps so severe that they describe it as being stabbed by a knife.

People with ALS commonly develop neuropathic pain in their hands, feet, or other body parts. Neuropathic pain is the result of nerve compression or injury. This type of pain can cause:

  • tingling or numbness
  • burning
  • shooting pain
  • extreme sensitivity to touch or temperature
  • extreme sensitivity to pain

You can manage ALS pain with home remedies and medical treatments.

Medications

Medications that may help to reduce ALS pain include:

A doctor may recommend opioid pain medications, such as morphine, for severe pain that can’t be managed with other medications and to reduce discomfort near the end of your life.

A few medications are Food and Drug Administration (FDA) approved to slow the progression of ALS, including:

  • tofersen (Qualsody)
  • edaravone (Radicava ORS)
  • riluzole (Rilutek, Tiglutik, Exervan)
  • dextromethorphan hydrobromide and quinidine sulfate (Nuedexta)

Learn more about ALS medications.

Other treatments

Other treatments that may help you lower ALS symptoms include:

  • stretching regularly to help prevent muscle cramps
  • physical or occupational therapy
  • techniques to help your muscles relax, such as:
    • vibration
    • electrical stimulation
    • heat
    • ultrasound
    • acupuncture
  • injections into joints such as your shoulder or spine
  • taking steps to prevent constipation, such as eating plenty of fiber

Can cannabis reduce ALS symptoms?

The use of cannabis for treating ALS is under investigation. Anecdotally, some people report cannabis products help them lower pain or muscle spasms.

In a phase 2 clinical trial from 2019, researchers found promising results for the mouth spray nabiximols for reducing muscle spasticity in people with ALS. Nabiximols is a cannabis extract currently not FDA approved in the United States. It’s approved for treating some conditions in other countries like Canada and the United Kingdom.

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Here are some frequently asked questions people have about ALS pain.

What are the first warning symptoms of ALS?

According to the National Institute of Neurological Disorders and Stroke, early symptoms of ALS can include:

How long can you have ALS without knowing it?

ALS symptoms progressively get worse over time. People with ALS often don’t receive a diagnosis until 10–16 months after their symptoms begin.

Do ALS symptoms come and go?

ALS can cause similar symptoms as another neurodegenerative condition called multiple sclerosis (MS). But unlike some people with MS, people with ALS tend to have progressively worsening symptoms without periods of remission.

Pain is common among people with ALS, even though the disease doesn’t directly cause pain. ALS can indirectly cause it in many ways, such as causing muscle cramps or bed sores from extended bed rest or making you prone to injuries from falling or tripping.

Many treatments are available to help you lower your pain. These treatments include physiotherapy, regular stretching, or medications.