Questions and Answers
Responses are provided as general educational resources and should not be interpreted as diagnoses, prognoses, or treatment suggestions. Information and perspectives represent the views of the individual author(s); Can Do Multiple Sclerosis is not responsible for the accuracy or currency of the responses. Readers should consult with their healthcare team.
Can you recommend resources on letting go of stress, sleep, and relaxation for your mind, body, and soul?
Psychologist & Physical Therapist Response
Peggy Crawford, Ph.D & Sue Kushner, MS, PT
Can Do MS Programs Consultants
Congratulations for not only recognizing the importance of stress management, relaxation, and quality sleep- but for understanding that these skills and concepts, which are critical for your overall health and quality of life, cannot be learned or incorporated into your lifestyle plan alone. There are wonderful resources to guide, encourage, and counsel you.
Effective stress management is about changing your relationship to your problems, your stress, your body, and your mind. A primary goal in stress reduction is having access to a variety of tools- as well as the skills and mindset to utilize them effectively. Picture yourself wearing a tool belt. Do you want 6 hammers in this belt, or do you want 6 different tools so you can choose the tool that best fits the situation, while having several others as backup? To develop these adaptable skills, practice with different tools in different stressful situations… and try new ones even if you feel uncomfortable. Remember that giving yourself a choice is stress-reducing in and of itself, and following through with your plan to practice will add to your self-confidence and self-efficacy.
There are many effective stress management strategies, including regular physical exercise, organizational skills, SMART goals (Specific, Measurable, Attainable, Relevant, Time-based), relaxation exercises (deep breathing, progressive muscle relaxation, body scan, guided imagery, etc.), as well as many forms of mindfulness.
Mindfulness makes use of three tools that are available to you 24/7: your mind, your body, and your breath. By focusing your attention on what you’re experiencing from moment to moment without judging your thoughts, feelings, bodily sensations, and environment, mindfulness will help your mind “wander off,” and, in turn, will guide your attention back to your focus (e.g., your body or your breath) in a kind and gentle manner, devoid of criticism or judgement. Many people practice a combination of formal and informal mindfulness. Like many things in life, variety inherently reaps benefits.
Formal mindfulness involves setting aside a specific amount of time every day to sit or lie quietly, while focusing on breathing, another physical sensation, an object, a word, or an image. This practice is often referred to as meditation. Informal mindfulness comes in many forms that share a common focus: paying attention without judgement to everyday routine activities, such as breathing, brushing your teeth, bathing, answering the phone, stopping at a red light, or eating. It is also recommended that activities be done slowly, one task at a time. Multitasking really isn’t what it’s cracked up to be. Research and experience has shown that mindfulness is particularly helpful to people experiencing a chronic illness or disability. In the case of MS, mindfulness has been associated with improvements in pain management, fatigue, cognitive functioning (e.g., attention, concentration, and information processing), and mood. Practice is the backbone of learning how to make effective use of these stress-reducing tools and skills. Keep in mind that few (if any) of these require special equipment, club membership, or prescription.
Stress in our lives won’t go away and can actually be beneficial to some degree. Everyone knows that at its most primitive, the “flight or fight” response of stress has helped people survive since the dawn of time. Running away from daily stressors is not an option. Implementing strategies to stay and “fight”- or at least deal with- our stressors are necessary for managing stress and turning it into something productive.
However, you have to make sure that you are not adding to the stress by trying to fight it! We all know that MS exaggerates stress and stress exaggerates MS. This can lead to a vicious cycle that needs to be broken, or at least managed, with the mind AND the body.
It is well-proven that exercise plays a key role in the mind-body connection and can be very effective in combatting stress. Because everyone’s minds and bodies are different, developing an individualized program with exercises and activities that work best for you is essential. Listening to your body is essential. Setting realistic goals is essential.
The goal is to determine what works best for YOU. Because multiple sclerosis is unique to each person, your strategies and regimen must be individually tailored. This may include exercising with an MS group by yourself or with your support partner. It may include time in a gym or in the quiet, convenient space of your home. Aquatic exercises or classes may work for one person, while another chooses to walk or bike outside (with modifications as needed).
Problem solving, combined with flexibility and the ability to “listen to your body,” will help minimize stress and maximize results. The mind and body can be a winning team in the management of stress related to MS!
Here are some resources you may want to explore:
Mind and Body: A Winning Team in Stress Management. Can Do MS webinar
David Engstrom, Ph.D. Untying the Knots: Basic Training in Stress Management (4 cassette tapes)
Stockholm School of Economics. Podcast series about mindfulness.
Jon Kabat-Zinn: Full Catastrophy Living: Using the Wisdom of Your Body and Mind to Face Stress, Pain and Illness (1990 and 2013).
Three series of practice CDs, Guided Mindfulness Medication available at www.mindfulnesscds.com.
Belleruth Naparstek: CDs and tapes on guided imagery for multiple conditions and topics including stress sleep, pain, depression and specifically MS: A Meditation To Help You with MS available from Health Journeys.
Of course, the best resources for your individual circumstances will come from a professional therapist or counselor. I recommend consulting with your healthcare team to help you "let go" and manage your stress.
Is depression caused from MS? If so, can things get better (or at least the same way they were before)?
Rosalind Kalb, Ph.D.
Can Do MS Programs Consultant Coordinator
Depression is one of the most common symptoms of MS and also one of the most treatable. Although it can range from mild and episodic to severe and chronic, depression frequently responds well to talk therapy (particularly cognitive behavior therapy) and antidepressant medication. Exercise is also known to enhance mood.
Depression is known to be more common in people with MS (as well as other illnesses that have a similar inflammatory component, e.g. rheumatoid arthritis) than in the general population or people with most other chronic illnesses. Researchers have concluded that depression in people with MS may have multiple causes, including the MS disease process itself, a reaction to the challenges and losses MS can cause, and a family history or genetic predisposition to depressive illness.
Regardless of the cause, however, the treatment recommendations are the same. It is important to be evaluated by a mental health professional who can help you determine the best course of treatment to get you feeling like yourself again. If an antidepressant medication is recommended, keep in mind that it can take up to 4-6 weeks for the medication to provide optimal benefit, and it may take time to find the right dosage for you with the fewest side effects. Your neurologist may be able to refer you to a mental health professional who is experienced in MS. You can also contact the National MS Society (800-344-4867) for a referral.
For more information, please watch the Can Do MS webinar Discover The Invisible: Pain and Depression in MS and Taking Charge of Depression and Mood Changes, for which I also co-authored an article on this topic. The National MS Society also has some great resources that you may find helpful.
Can someone with MS have mood swings?
Rosalind Kalb, Ph.D.
Can Do MS Programs Consultant Coordinator
Depression, anxiety, fatigue, and altered cognitive and emotional functions are major symptoms of multiple sclerosis. Compounded, these can create "mood swings" that can impact your self-care, relationships, work, and overall quality of life. With this in mind, it’s important to be aware of the most common mood changes that occur in MS.
For most people with a chronic illness like MS, as well as their support partners, healthy grieving over changes and losses is part of the picture. Beginning with diagnosis, and again with changes in function or everyday activities, people need to grieve over losses they experience before they can move forward with their lives. Normal grieving ebbs and flows with these changes. Depression, on the other hand, is both a symptom of MS and a reaction to the challenges it poses. More than 50% of people with MS will experience a major depression. For somewhat different reasons, support partners are also at risk for depression. Regardless of the cause, depression deserves the attention of your healthcare team. Accurate diagnosis and adequate treatment – ideally consisting of counseling, medication, and exercise – are important.
Mood swings and irritability are also common symptoms of MS, caused by the disease itself and its challenges. These mood changes can easily be confused with depression, in part because people with MS who are depressed may appear more irritable or moody than tearful. Depression, however, does not come and go in the same way, and will generally continue or worsen until adequate treatment is provided.
Anxiety is as common in MS as depression, but generally receives less attention. People with MS and their support partners experience anxiety over the unpredictable impact of MS on their day-to-day lives and the future. Left untreated, anxiety can interfere with planning, problem-solving, and quality of life. Counseling – with medication, if needed – is an effective treatment strategy.
Physical activity and/or exercise are often recommended as adjunct or even primary therapy for depressed mood, anxiety or stress. While controversy remains, the collective evidence suggests that exercise might indeed be helpful for these conditions in the general population. For persons with MS, exercise appears just as likely to promote psychological well-being. It is likely that aerobic or resistance (aka strength) training can be effective and that the exercise need not be intense. It may even be possible to see the positive effect of exercise on mood after only a single exercise session. Finally while most of the research in this area has been on traditional forms of exercise, yoga, tai chi, and even sport climbing have been shown to improve psychological well-being, including mood, fatigue, anxiety, and depression.
Click here to get even more great tips on this topic by viewing our archived webinar on Managing Depression & Mood Changes. Please also read this article I co-authored, Taking Charge of Depression and Other Mood Changes. The National MS Society also has some great resources, including Mood Changes.
Knowing that mood swings are a real and common symptom of MS, the first step to recognize when these mood swings occur. Talk to your family and loved ones, document your moods in a journal or diary, and consult with mental health professionals. Your healthcare team can then work with you to develop individualized management and coping strategies.
Can my MS be the catalyst for anxiety? Can anxiety and claustrophobia be caused by my frequent MRI's?
Meghan Beier, Ph.D.
Can Do MS Programs Consultant
The short answer is "yes." MS patients often present anxiety because of the uncertainty of living with MS, a disease hallmarked by ambiguity. Data show that 85 percent of people with MS have periods of stable health followed by an episode of worsened symptoms that may or may not fully remit. Not only are uncontrollable and unforeseeable life change (especially health changes) common causes of anxiety, the changes in the manifestations of anxiety in MS can make it can be hard to diagnose and treat. Being able to cope with this uncertainty is central to managing your anxiety and overall psychological well-being. I highly recommend acceptance and commitment cognitive therapy. This type of intervention focuses on mindfulness, acceptance, and a commitment to living a life focused on what is important and meaningful—as opposed to living a life based on avoiding or being stuck on challenges, which can also cause or exacerbate anxiety. Instead, you can identify what is most valuable to you and then uncover a way to obtain that value, despite your MS symptoms. Because MS affects so many aspects of life, I also recommend you address your anxiety with a multidisciplinary team to allow treatment from many different angles. I often coordinate with psychiatrists, neurologists and physiatrists, as well as physical, speech, and occupational therapists, on a regular basis to provide comprehensive care for patients with MS.
For more information on anxiety and MS, Can Do MS has an extensive library of resources, including two webinars that I co-presented: Workout Your Worries: Anxiety and Exercise in MS and Discover the Invisible: Pain And Depression in MS, which includes a section on diagnosing and managing anxiety.
In response to your concern about claustrophobia: Although I am not aware of any research directly linking claustrophobia to MS, MRIs require being still in a tight, enclosed tube. If you experience discomfort or fear of confined spaces, your MRIs could certainly exasperate those negative feelings. I would also bring this up with your healthcare team to come up with some solutions. I would also recommend this first-hand perspective from an MS patient experiencing similar issues in Multiple Sclerosis News Today.
It makes me sad when I read stories about people that can run or ride a bicycle when most of us with Primary Progressive MS have lost that ability. I used to be a very active person, and I want to know what people like me are doing now to cope. The devastation of not being able to use my limbs – coupled with reading stories of other people swimming and hiking and bicycling- only bring me despair.
Answer by Roz Kalb, Ph.D– Clinical Psychologist and Can Do MS Programs Consultant
As a mental health professional, I know that losing the ability to do something you enjoy is always a painful loss. Regardless of one’s disease course, MS can cause symptoms that gradually or suddenly interfere with home, work, and recreational activities. Watching others continue to do them with apparent ease only makes the loss more challenging to manage. The grieving process is not only normal and healthy, it is the first step towards finding satisfying and enjoyable alternatives that may become passions.
It is important not to compare your grieving to other people. The grieving process is unique to each individual -- faster for some and slower for others. Some people need to grieve privately while others benefit from sharing the experience with others or with a counselor. Whatever your personal style, the important thing is to allow yourself this grieving time.
The next step is to allow yourself to consider options – looking at new ways to do the things you love and considering new activities that you might never have tried before. People who are forced to give up activities they love may try an activity they would never have considered in the past and discover a new interest. This may be “easier said than done.” My biggest recommendation is to utilize your support system and interdisciplinary health care team, who can work together to help you physically and emotionally. In particular, physical and occupational therapists are great resources to help you explore your options to stay active.
Answer by Mandy Rohrig, PT, DPT – Physical Therapist and Can Do MS Programs Consultant
As a physical therapist, I recommend a consultation with a rehabilitation professional – either a physical or occupational therapist – who understands MS. These professionals can help you understand your abilities, encourage exercises to optimize those abilities, and make adaptations to accommodate existing challenges.
If you excelled at cycling or did it competitively, you may feel disappointed in doing an adapted version of that sport. However, you may discover that you love the new challenge. The first step will be choosing the attitude in which you approach finding alternative activities that may need to be adapted to your physical abilities.
You will be happy to know that the world of cycling has expanded greatly to accommodate everyone! Three-wheel recumbents, arm or leg propulsion, or electric bicycles may be great options for you. I would recommend looking into electric bicycles because they allow you to pedal when able and use the electric feature when fatigued. Many areas have group classes and outings so you can feel the social connection that you enjoyed with bicycling.
Exploring other options for adaptive sports may be another strategy. Nationwide, there are organizations dedicated to providing adaptive sports and recreation, such as golfing, swimming, kayaking, and skiing can be adapted for individuals of varying ability levels.
We would encourage you to explore the following resources: www.disabledsportsusa.org and the National MS Society’s page about adaptive sports http://www.nationalmssociety.org/Living-Well-With-MS/Work-and-Home/Recreation-and-Travel/Finding-Another-Sport-to-Love.
A willingness to consider adaptations and viewing them as tools to participation is essential. Many people living MS and other conditions have faced similar challenges and have found ways to continue participating in sports they love. Perhaps speaking to or reading about others can inspire you. The founder of Can Do MS, Jimmie Heuga, epitomized this spirit of adaption and modification to allow him to continue enjoying skiing despite his disease progression. I would recommend reading Jimmie’s story: https://www.mscando.org/about-can-do-ms/our-mission/founder.
Thank you for your thoughtful post. We hope you find ways to be active and fulfilled.
I am so frustrated. I have lows almost every day that knock me out and require me to lay in bed without any energy. Then, without explanation, I get up and feel well. What can I do to manage these mood/energy swings?
Answer by Gayle Lewis, Ph.D. – Psychologist and Can Do MS Programs Consultant
I'm very sorry to hear of your challenges. What you're describing seems to speak both to the depression and fatigue that often accompany MS, as well as the unpredictability of the disease. Having a chronic, unpredictable disease in itself can be very upsetting and overwhelming. Adding low energy, mood shifts, and uncertainty to the equation can understandably create frustration.
First, remind yourself that mood swings are a normal and quite prevalent symptom of MS. Hopefully, understanding that these issues are biological associations to your MS will make you feel less frustrated. Because these mood swings are caused by reactions in your body, they can be treated. YOU CAN BE IN CONTROL OF YOUR MOOD AND FEELINGS, rather than your MS controlling them. Speak to your physician about possible treatment options, including antidepressants or mood stabilizers (depending on what seems more appropriate). Here are some other tips that may help:
- Mediation is a very regulating, calming and energizing activity that, again, YOU are in control of vs. feeling controlled by your MS.
- Acupuncture has been shown to be helpful in dealing with emotional and physical fatigue.
- Speaking to a therapist regularly can be very useful in managing your feelings about your MS and offer ideas how to deal with the disease in ways that are useful to you.
- Add things to your life that allow you to feel empowered...this alone can have a wonderful capacity to bring you energy and strength.
Secondly, I would highly recommend you implement energy management strategies. It's very difficult to suggest that one conserve energy at times when you actually HAVE energy....but that's very important to do. Ideally, you'd like to motivate your system to be more in balance...and for YOU to be in charge, rather than your MS ruling your feelings. This might mean incorporating tools into your life that make doing chores easier and less time-consuming, getting help from others, and spreading your tasks out throughout the day. An Occupational Therapist can provide ideas about making tasks less energy-evoking.Finally, it is important to be aware of your changing feelings, moods, and energy levels. Can Do MS recommends keeping a journal and sharing this with your healthcare team. People with MS and support partners are significantly at risk for depression, mood swings, and anxiety. These symptoms have been noticed as a major feature of MS for over 100 years, but are often overlooked by healthcare professionals. You have to be your best advocate and educate yourself. Can Do MS is a great place to start. They have some wonderful articles and webinars on managing depression and fatigue. The National MS Society also has an extensive library devoted to emotional changes and mood changes. I hope these ide
I am 67-years-old, and my husband is 74-years-old. I was diagnosed with a mild form of remitting multiple sclerosis in 2010. My husband was diagnosed with Alzheimer’s in 2013 and is an insulin-dependent diabetic II. How do I keep from being over stressed?
Clinical Psychologist Response
Rosalind Kalb, PhD
Can Do MS Programs Consultant
I’m so glad that you’ve reached out to Can Do MS for suggestions. You’re dealing with many different stressors, each of which can be a lot to handle. I think that the key to managing so many complicated issues is to make sure that you’re tapping all the resources that are available to help you; no one should feel that she or he has to do this alone.
I would start by thinking about the things that worry you the most, and tackle them one by one. So, for example, if you have financial concerns, make sure that you reach out to get some expert guidance. The National MS Society offers a free consultation with a financial planner, as well as ongoing assistance with questions/concerns. You can get information about this by calling 1-800-344-4867. If you are concerned about long-term care issues, or how to go about finding long-term care resources should the need arise, now is the time to start talking about your priorities and getting information about the available options – beginning with help in the home and extending to day programs, assisted living, as well as nursing homes. None of us make our best decisions when we’re in a crisis, so talking and planning today helps you feel more prepared and less vulnerable whatever the future brings. These are just two examples, but the point is that one good way to relieve stress is to identify the tools and strategies you can use to address the things that worry your most. Knowing that you have plans and strategies in place, can help you stop ruminating about “What if this happens? What if that happens?”
A second critical strategy is to make sure that you are getting the emotional support you need. Staying connected with family and friends is important. Too often, people tend to withdraw from others and become isolated just at the time when those connections are most important. In addition to maintaining your social support network, you may want to consider talking with a counselor with expertise in health and chronic illness issues. Talking through your concerns, identifying options and strategies, and getting support for yourself can help you feel less stressed and more empowered to deal with whatever occurs. By calling that same number at the National MS Society – 1-800-344-4867 – you can get the names of therapists in your area.
The third important strategy is to make sure you’re paying enough attention to your own health and wellness. When dealing with chronic illnesses of various kinds, it’s very easy to become so focused on the medical issues that you neglect your overall well-being. Taking time to do things you enjoy, attending to your medical and dental preventive care needs, taking care of your spiritual needs, and finding whatever stress management techniques work best for you are all essential components of wellness. If you don’t know what activities best relieve your stress, the therapist can help you identify them – whether it’s time with friends, prayer, meditation, a hobby, journaling, or time in your garden, or something else entirely. Building these activities into your life is like physical therapy for your mind – keeping you calmer and more balanced.
And last but certainly not least, exercise is a wonderful stress management technique that is also good for your emotional well-being, cognitive functioning, and overall health. A physical therapist can help you identify an exercise routine that fits your abilities and limitations – whether it’s walking, swimming, or anything other physical activity that appeals to you.
Taking time to attend to your own health and wellness is essential for relieving stress and will also help you be a more effective care partner for your husband. I wish you the very best.
I'm on Avonex and take my shot on Monday. I have accepted the fact I lose Monday and Tuesday to the flu symptoms. My husband and son have learned these are "MS Monster days" and to let it run its course. Emotionally I feel lost, behind on life and feel as if I have to get so much done and push myself until I am where I am in a cycle of exhaustion, cognitive confusion, and my body is in spasticity, pain which leads back to sleep. How can I stop this cycle and what tools best help keep persons like me caught up and not so disorganized to accomplishing organization within life’s tasks that occur daily? Even this is scatter brain...
Registered Nurse Response
Jennifer Smrtka, ANP-BC, MSCN
Can Do MS Programs Consultant
Unfortunately, flu-like symptoms are common potential side effects with all interferon beta therapies used in MS. But there are some important tips that one can utilize to lessen the likelihood of losing days due to these symptoms.
First, make sure to be hydrated; especially on days of injections and “MS Monster days”, this can decrease flu like symptoms and their severity. Secondly, it may be helpful to take acetaminophen (Tylenol®), ibuprofen (Advil®), or naproxen sodium (Aleve®) an hour before injecting (at bedtime) and then re-dose again in the morning after breakfast. It may be helpful to take these medications for 24 hours after the injection. Thirdly, it may be helpful to take the injection in the evening before bedtime in an attempt to sleep through some of the side effects. Lastly, if you continue to struggle with your injections, speak to your neurologist and let him/her know your troubles. There are many options available and there may be a better option for you.
Emotionally, sleep deprivation can lead to feeling overwhelmed and “scatter brain”, as well as having difficulties with concentration, and coping strategies. It is hard to stay organized when you are exhausted and not feeling well. Perhaps using some organizational tools maybe helpful- such as a smart-phone to set reminders and alarms, or a personal organizer with a calendar. A centrally located “family calendar” may also be helpful with your husband and son’s assistance to complete for upcoming events. Weekly or even daily family staff meetings over dinner to communicate and establish what needs to be done on a day to day basis can also be helpful and share the burden of family tasks. There are websites that also have organizational tools for families.
What options are available for a person with MS to seek help with treating depression if they do not have health insurance and cannot see a health care provider?
Deborah Miller, PhD
Can Do MS Programs Consultant
First, the person should explore options for general health, including mental health, insurance through their state or the Federal Insurance Market Place. You can locate this agency online at https://www.healthcare.gov/get-coverage/. On the site, select the state of your residence in the dropdown menu.
We know from literature that the best approach to managing depressions is counseling, medication, and exercise. If an individual is truly locked out of obtaining mental health insurance, there are number of potential options for addressing each of these treatment components. For free/sliding scale counseling services, contact the National Multiple Sclerosis Society at 1-800-FIGHT-MS to determine what counseling services are offered. Other options are to contact the United Way to learn about community mental health agencies that provide free or sliding scale counseling services. Many community mental health agencies and free clinics include physician care, and those doctors evaluate a person’s mental health status and can provide prescriptions for antidepressants and information about pharmaceutical drug assistance programs. Finally, the National Multiple Sclerosis Society has great information in print and online about exercise options for people with MS. To access these resources, please click here.
All of these recommendations require motivation and energy, two commodities that are probably in short supply for someone with MS who has depression. It may be very difficult for someone in that situation to follow through on these recommendations. The first step for such a person is to reach out to a family member or friend, acknowledge the depression, and ask for help. Partnering with a support person is a positive first step in this road to treating depression.