Understanding ALS and Anxiety

A diagnosis of amyotrophic lateral sclerosis (ALS) can be emotionally challenging, and being upset or anxious about the unknowns is normal. However, fleeting or brief anxiety is not the same as a clinical anxiety disorder.

There are various types of anxiety disorders. They can all negatively impact the quality of life and physical functioning with ALS. Various studies have shown the interplay between ALS symptoms and anxiety. Appropriate treatment for both conditions is a necessary part of any treatment plan.

While there have been very few systematic studies, one meta-analysis from 2021 found that the prevalence of anxiety disorders in people with ALS ranged from 20.5% to 67.7%.

This article will discuss ALS and anxiety, how the conditions can affect each other, and their diagnosis and treatment.

The Connection Between ALS and Anxiety

Being diagnosed with a progressive disease can naturally cause emotional reactions, especially anxiety about the future and what you might experience with this condition. As the disease progresses, gradual loss of functioning and changing quality of life can also have emotional impacts, causing anxiety.

It’s important to recognize this and that anxiety itself can impact physical health and quality of life, amplifying the symptoms that ALS is causing.

Sometimes symptoms of ALS, like trouble swallowing, respiratory problems, or pain, can cause anxiety. It’s important to recognize how ALS and anxiety are connected.

Latest Research

Dyspnea (difficulty breathing) is a major cause of distress in people with ALS. It has also been found to be the most significant cause of anxiety in ALS. This is important because without addressing both factors, quality of life is impaired.

Slower disease progression has also been associated with higher levels of emotional well-being, but this needs to be further studied.

Complications of ALS and Anxiety

Anxiety can cause loss of appetite, especially in people living with ALS. This can lead to weight loss, which can be concerning because maintaining weight is important to keep up muscle strength and delay muscle wasting (shrinkage) in ALS. Without adequate nutrition, muscles can weaken, worsening ALS symptoms and quality of life.

It can also be tricky because certain symptoms of ALS, like dyspnea, can cause anxiety. It’s important to evaluate the physical symptoms that may be contributing to your anxiety but also recognize that anxiety may be present for other reasons and impacting symptoms.

Anxiety can also reinforce isolation if you're too anxious to attend support groups or connect socially with other people. This, in turn, can worsen your emotional functioning, which can then impact self-care and physical health.

Diagnosis of ALS and Anxiety

There is no definitive test for ALS, and it can be difficult to diagnose because the symptoms can mimic other conditions. Other diseases must be ruled out to ensure an accurate diagnosis.

A neurologist (specialist in conditions affecting the nervous system) will evaluate all presenting symptoms and take a detailed medical and family history.

Based on this information, they may order various tests to evaluate your muscles, nerves, and other systems to further rule in or rule out diagnoses. Tests may also be done at intervals after your diagnosis to see whether symptoms are progressing. These tests can include:

• Electromyography (EMG): Recording device that detects muscle fiber electrical activity
• Nerve conduction study (NCS): Looks at the ability of a nerve to send a signal along the nerve to a muscle
• Magnetic resonance imaging (MRI): Used to get images of the brain and spinal cord
• Blood and urine tests: Can rule out other conditions
• Muscle biopsy: Removal and analysis of a small piece of the muscle to learn whether the symptoms may be due to another condition and not ALS

Mental health disorders like anxiety disorder are diagnosed by a healthcare provider or a mental health professional. They use the Diagnostic and Statistical Manual of Mental Disorders , Fifth Edition, or DSM-5, to evaluate and confirm a diagnosis.

Self-Test for Anxiety

An online self-test is not a substitute for a professional diagnosis. It’s important to get a clinical diagnosis of an anxiety disorder from a professional.

A self-test can be a good motivator to see a mental health professional. It’s also helpful as something you can bring up to the professional and ask if it’s accurate.

A professional diagnosis is especially needed because some anxiety symptoms, like changes in appetite, weight loss, or trouble sleeping, can be caused by ALS. A mental health professional can determine whether you have an anxiety disorder and develop an appropriate treatment plan.

You can use a printable GAD-7 online screening tool, a test used with evaluations for anxiety disorder. You can bring it with you when you have an appointment.

A self-evaluation for anxiety from Psychology Today gives you a free summary of the results. You can also purchase the full results for less than $10. You may also find the anxiety screening test from Mental Health America helpful.

Treatment of ALS and Anxiety

ALS is treated by a team of professionals from various fields, depending on your needs. Your healthcare team may include pharmacists, therapists (occupational, physical, and speech), physicians, psychologists, nurses, and others.

Treatment can include medications for ALS and any symptoms, physical and occupational therapy, nutrition therapy, communication support, and breathing support. ALS treatment can vary by person and throughout your experience, depending on the symptoms at any given time.

Medication and psychotherapy are the typical treatments for anxiety. The specific medication and kind of therapy depend on the type of anxiety disorder, the underlying cause of the anxiety, and how it presents itself.

Anxiety can potentially affect ALS treatment because some medications used for each condition may interact, resulting in adverse effects. Tell your healthcare providers about your medications so they can figure out the most appropriate medications for you.

Medications

Medications for ALS depend on your symptoms and needs. For anxiety, sometimes antidepressants that also treat anxiety can be used. If these are not effective, Wellbutrin (bupropion) or benzodiazepines like Valium (diazepam) or Ativan (lorazepam) are recommended.

There have been no systematic studies of antianxiety drugs in people living with ALS. If you are taking any medications for your anxiety, tell your ALS providers what you are on and the dosage to ensure there are no possible medication interactions.

Psychotherapy

Psychotherapy is often used with medication to treat anxiety. Before any therapy is decided upon, a mental health professional will conduct a thorough evaluation to assess the most effective treatment. Different types of therapy for anxiety can include:

• Cognitive behavioral therapy (CBT) focuses on identifying and understanding thought and behavioral patterns so they can be changed.
• Acceptance and commitment therapy (ACT) uses acceptance and mindfulness techniques, with commitment and behavior change, to deal with intrusive or unwanted thoughts or feelings. It teaches skills to accept feelings and place them in context.
• Dialectical behavioral therapy (DBT) combines CBT techniques with concepts from meditation and acceptance and change.
  

Coping With ALS and Anxiety

After a diagnosis, you may be in need of new coping skills and extra support. This is normal and nothing to be ashamed of or upset about. Additional support can be seen as part of your treatment plan to help you live the best life possible.

If you are having an especially hard time and are unsure how to cope with your ALS and anxiety, tell your treatment team. They can help connect you with coping resources.

Lifestyle Changes

Lifestyle changes can be helpful in reducing symptoms or making them more manageable, but both ALS and anxiety require treatment from a medical professional to be appropriately managed.

Anxiety can interfere with appetite. Not getting enough calories is a problem if you have ALS. Maintaining your weight and nutritional requirements is important in keeping up your muscle strength. Weight loss can speed up muscle wasting, which you want to delay with ALS.

Dietary changes can be helpful but are not a substitute for ALS treatment.

A 2020 study found that fiber, antioxidants, and carotenes from fruits and vegetables were associated with better functioning in people with ALS. Eating a lot of meat has been associated with a higher risk of ALS, and diets high in milk and dairy-based foods can worsen functioning in ALS.

A healthy diet can also help with anxiety. Lower levels of anxiety have been associated with eating more fruits and vegetables, omega-3 fatty acids (found in fatty fish, walnuts, chia seeds, and more), and healthier dietary patterns. Conversely, higher levels of anxiety have been associated with high-fat diets and diets with more sugar and refined carbohydrates.

If you are having difficulties with getting adequate nutrition, talk with your healthcare provider about possibly meeting with a nutritionist who specializes in people with ALS to help you put together a healthy dietary plan.

Support Groups

Support groups for ALS can be very helpful, whether they’re online or in person. Groups to check out can include:

• ALS Association support groups: You can look these up by state.
• I Am ALS: Has weekly virtual support groups.

If you’re looking for a support group for your anxiety, these might be helpful:

• Anxiety & Depression Association of America: You can search for support groups near you or for virtual groups.
• 7 Cups: This is an app with free 24/7 chat support, paid chat sessions with a mental health professional, and online meetings and groups.

Your treatment team may also have resources about support groups at your treatment center or a local hospital for people living with ALS or people living with anxiety.

Summary

A clinical anxiety disorder is more than just nerves about what lies ahead after being diagnosed with ALS. Anxiety disorders can cause significant impairment in quality of life and interfere with ALS treatment and healthy lifestyle behaviors, like nutrition. It’s important for anxiety to be treated so that you can be as healthy as possible while living with ALS.

A Word From Verywell

Anxiety doesn’t mean you are weak or not handling things well, and an anxiety disorder is not something you can take care of on your own. It needs treatment with therapy and medication. Anxiety can interfere with your health and your ALS treatment.

Talk with your healthcare team if you are having symptoms of anxiety. They are there to help and support you, and that includes your emotional health, too.