Multiple sclerosis and mental health

 

Living with a chronic illness such as multiple sclerosis (MS) — which is caused by the immune system erroneously attacking and damaging neurons in the brain and other parts of the nervous system — can lead to mental health problems such as depression and anxiety.

Because the brain is responsible for regulating and experiencing emotions, the nervous system damage that occurs in MS can result in mental health challenges or emotional changes for people who may already be experiencing the stress of navigating the world with a chronic illness.

In fact, compared with the general population, both depression and anxiety are about three times more common in people living with MS.

Good mental health is necessary for emotional well-being and self-care, including the motivation to eat, exercise, and interact socially with family and friends.

Mental health issues can be managed through a variety of medications, such as antidepressants or anxiolytics (anti-anxiety medicines), specialist care such as talk therapy, as well as lifestyle modifications including a proper diet and physical activity, among others.

It is important to talk with your doctor and seek advice from a mental health professional to help you deal with mental health symptoms, in addition to MS treatments to manage the physical aspects of the disease.

Nika (who asked that her last name not be used), who was diagnosed with MS in January 2022, says that by making modifications to her lifestyle, working with a mental health therapist and the rest of her MS healthcare team, she has made improvements to her mental health.

“I do want others to know that I am proof that there is hope, things can get better, and there are so many things we can do to empower ourselves and live our lives to the fullest (and perhaps an even fuller life than we did prior to having MS), even with a diagnosis like MS,” says Nika, a resident of Chicago.

MS and depression

Depression is characterized by a profound lack of energy accompanied by feelings of sadness and a loss of interest or pleasure in activities.

It is considered a relatively common symptom among people with MS, with as many as half of patients experiencing depression at some point in their lives.

Michael Cossoy, MD, a neurologist with subspecialty expertise in MS and neuroimmunology, and an assistant professor at the University of Manitoba in Winnipeg, Canada, says depression all on its own can be disabling if the severity is high.

He views depression as a magnifying glass that can amplify other health symptoms.

“People with depression often have disrupted sleep, which leads to higher levels of fatigue and cognitive impairment, which are both frequent symptoms in people with MS,” Cossoy says. “Neuropathic [nerve-related] pain is often worse in patients with depression, presumably in part due to alteration in how the brain processes pain.”

Experiencing depression also can interfere with a person’s ability to cope with having a chronic disease, and Cossoy notes that some patients may stop taking disease-modifying therapies during periods of depression. Stopping treatment, in turn, can lead to patients developing worsening MS.

“Depression is clearly related to lower quality of life,” Cossoy says.

But because it can overlap with other symptoms of multiple sclerosis, including fatigue and cognitive problems, depression can be difficult to diagnose in people with MS.

Symptoms of depression may include:

• sadness, emptiness
• irritability
• lack of interest or pleasure in activities
• lack of energy
• loss of appetite
• insomnia or oversleeping
• concentration problems
• feelings of worthlessness or guilt
• suicidal thoughts.

Contributing factors for depression in people with MS may include:

• fatigue
• insomnia
• pain
• sexual dysfunction
• cognitive problems
• spasticity resulting in stiffness
• neurogenic bladder, or a lack of bladder control due to nerve problems.

For those looking for online help, Mental Health America offers a short screening test for depression, looking at symptoms experienced over the prior two weeks.

Individuals should contact a healthcare professional if feelings of depression last more than two weeks.

In some cases, depression can lead to suicidal intent, and as such, must be taken seriously. If depression includes suicidal feelings, call the National Suicide Prevention Line at 1-800-273-8255 or visit suicidepreventionlifeline.org.

MS and anxiety

Anxiety is defined by feelings of fear, dread, and uneasiness. It is estimated that more than 40% of people with MS report clinically relevant anxiety.

Uncertainty about disease progression, and even what the next day may bring, are common causes of anxiety.

MS anxiety can lead to:

• elevated heart rate
• inability to relax
• lack of mental focus
• trouble sleeping
• trembling or shaking
• muscle tension
• gastrointestinal issues.

Anxiety also may be linked to:

• reduced cognitive abilities, specifically slower processing speed
• lower working memory performance
• reduced verbal learning.

Nika says she experienced anxiety long before she was diagnosed with MS. She had seen multiple doctors in the seven-plus years it took to pinpoint the cause of her unexplained health problems, which included pain, fatigue, and irritable bowel syndrome-like symptoms.

“I was finally diagnosed with MS after an episode where I experienced double vision and was admitted to the hospital for about one week while they ran tests,” Nika says, adding that doctors were initially unsure if the cause of her illness was a stroke or a brain tumor.

“This experience was very traumatic and anxiety-provoking itself because I was by myself through this process and unable to have any family with me due to COVID,” she says.

Ottawa, Canada, resident Anne (who asked that her last name not be used) says she also began experiencing anxiety before her diagnosis with MS.

“I started to experience anxiety 10 to 11 years ago for no reason. In hindsight, it may have been the initial MS symptoms,” says Anne, who was diagnosed with MS in August 2022.

Difference between anxiety tingling and MS tingling

Symptoms of MS can include numbness and tingling. However, these body sensations also can be due to numerous other conditions or circumstances, including anxiety.

MS tingling, which is caused by nerve damage in a person’s spinal cord and/or brain, can be an early symptom of the disease and also may occur during a disease relapse.

Also known as paresthesia, tingling is an altered sensation on the skin usually described by people living with MS as a pins and needles sensation. People with MS often report tingling and numbness in the face, extremities (arms and legs), or the torso.

“It is presumably due to an altered signal getting to the sensory cortex, which is then perceived as tingling,” Cossoy says, adding, “It can fluctuate in location and severity. Like many MS symptoms, it can get worse when the body is overheated.”

Cossoy says that tingling can be present in the absence of any anxiety or other mood issues.

In contrast, anxiety tingling is not caused by nerve damage — it typically is brought on by stress. Such stress may be a generalized feeling of anxiety through being overwhelmed by life, or triggered by social situations. This type of tingling often is associated with hyperventilation, rapid or deep breathing caused by anxiety or panic, and usually affects the limbs or the area around the mouth.

Anxiety tingling usually resolves in a short period, once the source of anxiety is identified and addressed, while tingling associated with MS tends to last longer and to potentially get worse over time.

Treatment for MS tingling or numbness typically is not needed, but may include anticonvulsants or antidepressants if symptoms become painful or disruptive. In severe cases, or when associated with a disease relapse, corticosteroids might be used as a treatment.

Counseling and therapy

If you are experiencing stress, anxiety, or depression, counseling or therapy may help to address these issues.

Counseling provides a safe, nonjudgmental environment for patients and caregivers to discuss the effects of the disease and plan for uncertainties at home or work. Counselors can provide emotional support and discuss the importance of assistance from family, friends, and co-workers. They also can outline a strategy to help people living with MS cope with the disease.

Psychologist Amy MB Sullivan, with the Cleveland Clinic Mellen Center, spoke to Multiple Sclerosis News Today about using a grief and acceptance model of therapy, sharing emotions with family, seeking immediate help if suicidal thoughts arise, and how life with a chronic illness adds another layer of complexity to mental health.

“The process is going to look different for each patient, and we have to recognize each individual’s needs and the ways they process the stages of their disease,” Sullivan said.

Cossoy says most MS clinics screen patients for mental health issues at every visit.

“Our clinic has a social worker who can provide some counseling and we have an agreement with psychiatry to see some patients in consultation for guidance if their mental health issues are beyond the scope of primary care,” Cossoy says.

A number of therapy options are available for MS patients who are experiencing mental health problems, including the following:

• Cognitive behavioral therapy seeks to help patients identify behaviors and thoughts that can have a negative impact on them, and work on practical problem-solving techniques. This can take the form of talk therapy and may help ease the severity of insomnia, fatigue, and anxiety in people with MS.
• Psychotherapy can help MS patients deal with emotional disorders and improve their mental health. It also is considered a type of talk therapy and comprises several techniques, based on particular concepts or models of human behavior.
• Mindfulness-based interventions have been shown to be of benefit to patients with MS. These interventions — focused on teaching people to direct their attention to the present moment and guiding them toward becoming more aware of their experiences without judgment (attention and acceptance) — can potentially alleviate stress, fatigue, anxiety, and depression.

When in doubt about the right type of therapy, speak with a healthcare professional. The Choosing Therapy Directory has a search function for therapists by specialty, experience, location, and insurance or price.

Nika, who is a licensed clinical social worker, says she works with a therapist who specializes in supporting those who struggle with chronic health conditions.

She started therapy in 2020, ahead of her diagnosis, because she was dealing with health problems that had no apparent cause, and she felt this was taking a toll on her relationships with others.

“I think it was helpful because I needed an ally and someone to help me make some big decisions at the time,” Nika says.

“I still meet with my therapist, and she has helped me explore ways to advocate for myself when meeting with my doctor and make some major decisions regarding MS medications as well,” she says.

Nika notes that it can be hard to talk about traumatic events while feeling unwell physically, and that it can be hard on the nervous system.

“Revisiting past traumas must be done delicately with someone who has MS and a compromised nervous system,” she says.

Support groups

Most organizations that provide information about multiple sclerosis also have MS support groups.

The forums on Multiple Sclerosis News Today offer the ability to connect with fellow community members who have MS, improving social interaction and providing support through shared experiences.

In the U.S., organizations that offer support groups include:

• the National MS Society
• the Multiple Sclerosis Association of America
• the Multiple Sclerosis Foundation
• the Accelerated Cure Project for MS.

In addition, most U.S. states have local support groups, and many other MS organizations around the world offer in-person and online support.

Lifestyle changes

MS mental health can be supported by lifestyle changes that include getting enough exercise, eating a healthy diet, and quitting smoking.

Cossoy notes that the sooner a person with MS shifts to a healthier lifestyle, the better.

“Unfortunately, patients with more severe physical impairment from their MS have more difficulty implementing these changes,” he says, adding that he suggests people make improvements in terms of aerobic exercise, healthier eating choices, and getting enough sleep.

Although there is no best dietary plan for MS, it generally is recommended that MS patients eat a varied and well-balanced diet, as it can help better manage and control the disease. In addition, evidence shows that what you eat can influence your mood and vice versa. Eating a healthy diet that includes a balance of protein, carbohydrates, healthy fats, fiber, and vitamins and minerals can give your mental health a boost.

Exercise can be helpful in reducing stress, anxiety, and depression. Try gentle exercise, such as swimming, pilates, or yoga. Yoga practice can lead to a better connection between mind and body, useful when dealing with a chronic illness.

Talk with your physiotherapist or other healthcare team member about other options for exercise, and ways to minimize your risk of falls. You also can look online for exercises that can be done while sitting.

It’s advisable to discuss any changes or plans regarding diet or physical activity with your healthcare team, based on your clinical situation and personal preferences.

Another lifestyle factor that can influence your mental health is smoking tobacco products. These have been associated with a higher prevalence of depression and anxiety among MS patients.

Programs are available through the National Institutes of Health to help people quit smoking, and the smokefree.gov website offers support, tips, tools, and expert advice.

Nika says she has made a number of changes to her lifestyle, including practicing meditation, exercising, and writing in a gratitude journal. She’s also added healthy foods to her diet, which now is primarily plant-based, and removed caffeine and alcohol. She also quit smoking.

“I pray, do yoga, walk and get outside in nature as much as possible, deep breathing, positive self talk: ‘You can do this’; ‘you are safe’; ‘you have health in you,’” she says. “I recently completed a seven-day medical medium stone meditation that was super helpful in letting go of fear, anxiety, and other difficult emotions.”

Daily coping strategies

Coping strategies that might help MS patients manage their mental health on a day-to-day basis can include talking with family and friends, writing your feelings in a journal, and seeking other ways to center yourself and regain your sense of calm.

Relaxation activities such as mindfulness and meditation can reduce stress, depression, and anxiety.

Try deep breathing to help you clear your mind of distractions. Deep breathing practice should start by assuming a comfortable position in a quiet room, and closing your eyes. Breathe in slowly for a count of four, hold for a count of two, then out slowly for a count of six, for a duration of two minutes.

The following activities may also help to support and maintain your mental health:

• Listen to music, an audiobook, or watch a favorite movie or TV show.
• Write in a journal. Challenge your negative feelings and look for ways to be optimistic.
• Pet or play with a companion animal, or watch birds at a feeder or fish in an aquarium.

Anne says that, along with other coping strategies, she’s been taking a low-dose selective serotonin reuptake inhibitor (SSRI) for the past seven years to help with her anxiety.

“​​I’m a non-smoker. Prior to my anxiety, I always ate a balanced diet and exercise three to four times per week. Medication seemed to be the most effective mechanism to alleviate my symptoms,” Anne says.

It’s also important that your caregivers take time to reset their own mental health. As they help you deal with your MS-related physical and mental health, they also can experience anxiety and depression.

Taking regular breaks and using coping strategies to recharge can help caregivers feel their best and be able to cope, which, in turn, will help them deliver better care.

What to do in a mental health emergency

A mental health emergency (or crisis) is when your behavior and thoughts prevent you from functioning or indicate you might harm yourself or others. This can happen when feelings of distress become overwhelming and previous coping methods don’t work.

The American Psychological Association says the most common sign of mental health crisis is “a clear and abrupt change in behavior.”

A mental health crisis can include:

• intense changes in mood
• inability to function in daily tasks or take care of hygiene
• feeling increasingly agitated, angry, or violent
• self-medication or self-harm
• withdrawal from others
• hallucinations or delusions
• paranoia
• suicidal thoughts.

This is the time to seek crisis intervention services, including walk-in psychiatric urgent care, a hospital emergency department, or by calling 911.

If you are in immediate need of medical help or if someone else is in danger, call 911. When calling 911, say that you are in a mental health crisis, so the appropriate service is contacted, such as a crisis intervention team.

Suicidal ideation is thinking about or making plans to end one’s life and can include thoughts and behaviors such as:

• actively seeking for ways to end your life
• self-destructive behavior
• talking about suicide
• having no reason to live
• feelings of guilt, shame, and failure
• withdrawal from your family and friends
• excessive anger
• writing your will
• giving away your possessions.

These are signs of an acute mental health emergency and should be taken seriously.

If you are having suicidal thoughts, reach out for help. Speak or text with a counselor at a crisis line:

• In the U.S., call the 988 Suicide and Crisis Lifeline at 800-273-8255 or dialing 988.
• Military veterans can reach out to the Veterans Crisis Line by dialing 988 and pressing 1.
• Send a text to the Crisis Text Line at 741741 in the U.S. and Canada.
• Internationally, find country-specific crisis text lines.
• Find country-specific crisis hotlines internationally at Suicide Stop or Befrienders Worldwide.

Pseudobulbar affect

One of the symptoms of MS is the pseudobulbar affect, known as PBA, which is characterized by a sudden burst of uncontrollable laughter or crying, often for no apparent reason, and inappropriate to the circumstances.

An estimated 1 in 10 people with MS may experience pseudobulbar affect, though this rate is likely higher because the symptom tends to be under-reported.

PBA can be misinterpreted for symptoms of mood or personality disorders, such as depression or bipolar disorder.

A medication called Nuedexta (dextromethorphan hydrobromide and quinidine sulfate) was approved in the U.S. in 2010 for PBA. It is the only approved medication specifically for this indication. Other antidepressants also may help manage this symptom.

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Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.