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Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disease. One of the indirect, secondary symptoms of ALS is pain. Specifically, patients experience physical pain, joint discomfort or muscle cramping. Fortunately, most of the pain is treatable.

Amyotrophic lateral sclerosis (ALS) is a rare neurological disorder that is characterized by the loss and deterioration of nerve cells that control voluntary muscle movements.

The primary symptoms of ALS include muscle weakness and loss, muscle spasticity, speech disturbances, difficulty in chewing and swallowing, and trouble breathing.

As the disease progresses, secondary or indirect symptoms tend to arise, and they create new problems for ALS patients. One of these secondary symptoms is pain. While pain is not a primary consequence of ALS, it still develops in a large number of individuals. In fact, studies have shown that pain occurs in almost all ALS patients at some point during the course of the disease. Additionally, the frequency of pain appears to be proportional to disease progression — the more progressive the disease is, more pain an individual experiences. 

Specifically, ALS patients report feeling physical pain, joint discomfort or muscle cramping, and they should brought this to the attention of the doctor or physiotherapist.

Types of Pain

Joint pain and stiffness 

While joint pain is not a common symptom of ALS, it can occur in patients with the disease. Both joint pain and stiffness develop due to a lack of movement and long-term nonuse of the patient’s limbs. Pain to the joint can also sometimes develop due to a passive injury to joints where the controlling muscles are very weak. For example, patients can sustain injuries or joint damage as a result of assisted transfers, or incorrect use of mobility equipment.

  • Many patients can ease joint pain by moving around and not sitting in the same position for a lengthy period of time. For patients that cannot move or have mobility issues, a caretaker can assist them with movement exercises.
  • Another method that can help alleviate joint pain is positioning the patient in a manner that does not cause any strain or stress on the joint. Additionally, seating and positioning in a wheelchair can be adjusted to allow pressure relief and support to vulnerable areas.
  • Physiotherapists or occupational therapists can also provide recommendations to help improve joint pain. They can prescribe braces (orthoses) to help support weak muscles and joints. However, if the symptoms continue then the patient should contact their physician.

Muscle Cramping

One of the ways that patients with ALS feel pain is through muscle cramping and stiffness, muscle twitching or contractions and jaw spasms.

The pain was found to be most prevalent in the back, shoulder, and neck area. However, patients have also reported pain in the buttocks, hips, feet, arms, and hands.

  • One of the methods ALS patients can alleviate this type of pain is by changing their posture. In addition, a medical market offers specific products, such as special cushions, chair backs, lumbar (lower neck) and cervical (neck) rolls that can be used to help attain and maintain the right posture. Another solution would be sitting in a reclined position can also help with proper posture.
  • Stretching is a necessary addition to any regimen because it can help maintain range of motion and it can make muscles more "loose". Therefore, stretching can stop muscle cramping and spasms, and prevent permanent stiffness in the muscles or joints. Hence, routine programs composed of stretching/range of motion exercises have been shown to help reduce spasticity and spasms. Physiotherapists can also help teach the patient or his caregiver exercise programs.
  • Furthermore, patients can ease the pain in the arm or legs by raising them on a footstool or placing the limbs on a pillow. Shoulder slings can also help.
  • A method to help ease cramping and light pain is to keep the painful muscle warm using heating pads. Additionally, a caregiver can help stretch out the muscle area(s) that are causing discomfort.
  • Another way to help ease the pain is through the use of pressure relieving equipment, which may be available through an equipment loan program at a local ALS Society.
  • There are also medicines that can help treat spasticity, often in combination with other drugs. However, every patient should discuss pharmaceutical options with the doctor: 
    • Baclofen is considered the first-line treatment for spasticity. 
    • Alpha-2 agonists clonidine (Catapres, Kapvay, Nexiclon)
    • Benzodiazepines such as diazepam (Valium, Vazepam)
    • Gabapentin (Neurontin)
    • Dantrolene sodium (Dantrium, Dantrolen, Dantamacrin)

Treatments for ALS-related pain 

Fortunately, most of the pain is treatable, and there are several options that are recommended to patients in order to reduce the pain that they feel and improve their quality of life.

Physical Activity

Physical activity and therapy can be used to help patients with pain management. Studies have indicated that physical therapy – which includes stretching exercises and functional mobility training – can help patients manage pain.

At this time, researchers are still investigating the benefits for ALS patients when it comes to conducting physical activity such as sports as experts in the field report conflicting results. Hence, it is imperative for an ALS patient to consult a physician before beginning any type of physical exercise regime.

However, regular systematic exercises can be beneficial when it comes to improving flexibility in muscles. Exercising can also help maintain flexibility in the neck joints, trunk, and limbs.

Medication for pain management

Medicines for pain relief can be used for managing pain and are recommended for ALS patients who are in pain. Over-the-counter pain medications are usually safe to take in ALS, such as nonsteroidal anti-inflammatory agents like aspirin, or acetaminophen. Opiates can also be prescribed to patients that are in severe pain. It is recommended that patients work with their doctors to discuss options.

Injections

If the pain is specific to a joint or some other part of the body – such as the shoulder or spine – rehabilitation medicine doctors can perform injections to relieve the pain. Other healthcare providers may also offer these injections.

Palliative care/hospice

At the later stages of the disease, patients can go to hospice care where providers can help manage pain and other symptoms at home.

Natural and alternative therapies

Cannabis has been reported to help alleviate physical pain, as well as other unfavorable symptoms, that are associated with the disease. In fact, one study showed that patients with ALS that used cannabis reported a reduction in appetite loss, depression, spasticity, drooling, and pain.

Acupuncture is an ancient treatment that has been around for thousands of years and has been found to be helpful for muscle spasms in other neurological diseases. Hence, it could be useful for pain symptoms in ALS. Other alternative therapies include massage, aromatherapy, hypnosis, or meditation.

Other treatments

There are several other treatments that can help ease pain in ALS patients including:

  • Vibration
  • Electrical stimulation
  • Heat to help relax tight, spastic, or painful muscles
  • Taping or bracing weak muscles (available over-the-counter, through a therapist or by prescription)

While the effect of these tools usually only lasts several minutes, they can be more effective if used alongside stretching.

  • Handy, Chalonda R., et al. "Pain in amyotrophic lateral sclerosis: a neglected aspect of disease." Neurology research international 2011 (2011).
  • Mitchell, J. Douglas, and Gian Domenico Borasio. "Amyotrophic lateral sclerosis." The lancet 369.9578 (2007): 2031-2041.
  • Chiò, Adriano, et al. "Pain in amyotrophic lateral sclerosis: a population‐based controlled study." European Journal of Neurology 19.4 (2012): 551-555.
  • Chiò, Adriano, Gabriele Mora, and Giuseppe Lauria. "Pain in amyotrophic lateral sclerosis." The Lancet Neurology 16.2 (2017): 144-157.
  • www.ncbi.nlm.nih.gov/pmc/articles/PMC4349402/
  • Photo courtesy of SteadyHealth.com

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