Does ALS cause pain?  

It is a common misconception that pain is not associated with ALS. This may stem from the fact that other forms of paralysis, such as spinal cord injuries, can cause a loss of feeling in the affected parts of the body. However, people with ALS usually retain feeling all over their body, even as they lose the ability to move. While the disease does not directly cause pain in most cases, complications due to these symptoms can often be very painful.  

What kinds of pain do individuals with ALS feel?  

A study published in The Lancet in 2016 found that immobility and muscle weakness caused by ALS can lead to several physical issues:  

  • Extra strain on muscles caused by weakness. 
  • Pain and soreness caused by long periods of immobility. 
  • Discomfort associated with procedures like feeding tube placement or tracheostomy. 
  • Constipation. 
  • Muscle cramps. 
  • Spasticity, or muscle stiffness. 
  • Cartilage breakdown caused by immobility can also lead to joint pain, according to another 2014 study published in Biomed Research International.

How is pain managed in ALS?   

Pain management is integral to enhancing the quality of life for people with ALS. A 2022 narrative review published in the Journal of Yeungnam Medical Science outlines several treatment options depending on the source of pain. For muscle cramps and spasticity, passive exercises, stretching, and aromatherapy may prove beneficial. Over the counter NSAID pain medications like ibuprofen and acetaminophen. Additionally, prescribed muscle relaxants can aid in managing spasticity. Other medication options include steroid injections for managing joint pain, and anticonvulsants like gabapentin for neuropathic pain. 

Palliative care, a multidisciplinary field of medicine that aims to optimize quality of life for people with severe or terminal conditions, can play a pivotal role in addressing physical, emotional, and psychological aspects of pain in ALS. Some research has pointed towards physical therapy as an effective pain management strategy as ALS progresses. Strengthening and stretching exercises can help with mobility and joint stiffness. Repositioning schedules, reoccurring roughly every 2-4 hours can also help with pain, maintain mobility, and prevent bedsores. 

The progressive nature of ALS often necessitates ongoing adjustments to pain management strategies as symptoms evolve. 

Limited mobility resulting from muscle deterioration may make it challenging for patients to engage in certain pain-relieving activities or exercises. Despite these challenges, a comprehensive and adaptable approach that incorporates exercises (if possible), medications, and palliative care can significantly improve the overall well-being of people with ALS. R

What can we do to improve the understanding of pain in ALS?   

Pain is not typically considered to be a direct consequence of ALS – meaning that the disease itself does not cause painful symptoms. However, many people with ALS experience significant pain due the downstream effects of their symptoms. Disseminating information about the potential role of pain in ALS is a crucial step in improving the overall management of the disease. This process involves educating healthcare professionals, patients, and the broader public to enhance awareness and facilitate more effective care strategies.  

Many people with ALS experience pain differently. A great resource to learn more about it directly from experts and people with ALS is the Roon app. Roon is for answering common questions about ALS, featuring video answers from doctors, researchers, and people living with the disease. To learn more about Roon, click here. 

To learn more about ALS TDI and our research to end ALS, click here.  

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