ALS patient talking to a doctor

ALS and Pain: Important Things to Know

When we talk about pain and Amyotrophic Lateral Sclerosis (ALS), the connection between the two is a little complicated. Much of the attention is put on the emotional pain that comes with the disease and there’s good reason for that.

The prognosis for individuals diagnosed with ALS is poor and this can lead to emotionally painful issues such as anxiety and depression.

What is less talked about is physical pain and particularly whether or not it can be caused by ALS.

Here we take a closer look at the connection between physical pain and ALS along with ways to manage it.

Can ALS Cause Pain?

ALS damages and then kills the nerves that send messages to our muscles. For most people, that means a gradual weakening of the muscles and loss of strength.

Direct pain in ALS is not common. In other words, it doesn’t hurt as the nerves begin to die. But it’s important to be aware that pain can be caused by issues associated with the disease, such as lack of joint mobility and muscle cramping.

Types of Pain Associated with ALS

When looking at pain and ALS, it’s important to understand that loss of functioning in the muscles and other parts of the body can have numerous effects.

Common issues experienced by ALS patients include:

  • Joint pain because of lack of movement. Whilst ALS does not cause the pain itself, lack of movement over a long period can have an impact on joint mobility and lead to discomfort.
  • Muscle spasticity and cramping. Twitching and muscle contractions are not unusual in ALS and this can also lead to pain because of cramping.
  • Weakness in one area can also put stress on other muscle groups. ALS pain can be a result of some muscles having to overcompensate for others that have lost their strength because of nerve degeneration.
  • As nerve damage becomes more widespread, immobility can also lead to issues such as pressure sores.
  • Constipation can also be an issue as the disease progresses and can be particularly uncomfortable for those with later stage ALS. 

Pain and discomfort generally become more prevalent as the disease progresses. Difficulty breathing can be extremely challenging for patients and medical interventions such as putting in a feeding tube can also cause secondary pain issues.

ALS Pain Management

ALS patient stretching

As this is a progressive disease, ALS pain management will need to evolve as the individual’s condition changes. The good news is that most of the issues associated with ALS that cause pain can be dealt with effectively and there are numerous ways to manage them.

  • Undertaking range of motion exercises and stretching will certainly improve joint mobility and reduce problems such as spasticity in the early stages of ALS.
  • There are a variety of non-medical techniques such as electrical stimulation, heat patches and vibration that can be used to alleviate spasticity and loosen cramped muscles.
  • Acupuncture has also been shown to help improve problems such as spasticity and muscle cramps.
  • Pain medication is an option, of course. Over the counter pain killers are often used initially but as the disease progresses stronger, prescribed medication may be more, suitable.
  • Bracing weakened areas of the body can help support the individual and reduce the risk of pain occurring. Specialist cushions and chairs as well as neck supports can also be used.
  • If pain is affecting a specific area (for example, a shoulder or elbow joint) direct injections can bring relief.
  • Issues such as constipation can be improved by putting in place a regular bowel regimen, including eating a high fiber diet and the monitoring and timing of bowel movements.

It’s important to understand, however, that everyone is different. ALS does not progress along a standard path and a pain management routine has to be both preventative and reactive to the needs of the individual.

Preventative measures will include mobilizing joints and undertaking stretching exercises to ensure spasticity and cramping is minimized.

Keeping exercise as part of a daily routine as long as possible can have a significant positive impact on the individual living with ALS. Paying attention to issues such as posture and the equipment that is used to support the individual will also make a huge difference.

Pain and joint issues are more likely to occur in the later stages of ALS. According to research, 74% of those in the final stages of the disease will require some form of pain medication.

Pain Indirectly Caused by ALS

Whilst ALS does not cause pain per se, it often occurs as a secondary symptom because of problems such as lack of joint movement, stress on the body and muscle spasticity. ALS pain management is personal to the individual, but there are many options and solutions that the patient can consider to alleviate pain caused as a result of their condition,