Multiple sclerosis is a chronic, often disabling disease of the central nervous system. Symptoms may be mild, such as numbness in the limbs, or severe, such as paralysis or impaired vision. The progress, severity and specific symptoms of MS in any one person cannot yet be predicted, but advances in research and treatment give hope to those affected by the disease. (Nationial MS Society)
Fatigue is a universal symptom. We have all experienced fatigue at some time or another usually due to lack of sleep, over work, stress or the flu. For most of us fatigue comes and goes but rarely affects our ability to function or carry out daily activities. However, fatigue experienced by individuals with MS is often described as ever present. It rarely goes away completely, but fluctuates in intensity over the day, week or month. MS fatigue can interfere with function and activities of daily living.
The MS Council for Clinical Practice Guidelines defines MS fatigue as a subjective lack of physical and /or mental energy that is perceived by the individual to interfere with usual and desired activities. MS fatigue is the most common of MS symptoms with a prevalence as high as 90%. For some, fatigue is their worst MS symptom and is often listed as one of the top three most disabling symptoms.
There are two types of MS fatigue, subjective and physical. Subjective fatigue is a feeling of being tired, lack of energy or sense of lassitude. It can be so severe that concentration and thinking are difficult. Physical fatigue or fatigability is focal muscle fatigue that occurs with persistent activity, such as a limp with walking, and recovers with rest.
The exact cause of MS fatigue is poorly understood, however there are a number of factors that are known to contribute to the problem such as temperature, disease activity, level of disability, medications, lifestyle habits and secondary medical conditions.
Fatigue tends to fluctuate with the body’s natural temperature variations known as diurnal temperature. Our body temperature usually peaks mid to late afternoon and is at its lowest around 2:00 or 3:00 a.m. This is certainly reflected in persons with MS who find their fatigue is worse in the afternoon, best in the morning and may improve in the evening. Fever and elevated environmental temperatures can also worsen fatigue. Demyelinated nerve fibres are more sensitive to temperature changes.
Increased disease activity, such as a relapse, is often associated with increased fatigue. Activation of the immune system, as part of an inflammatory process, results in the release of substances such as lymphokines and cytokines. It is this immune response that is responsible for the fatigue experienced with the flu or MS relapses. Suppression of the immune response with immunomodulating therapies and steroids may explain why some patients experience an improvement of their fatigue on treatment.
Level of Disability
The greater the level of disability the more effort or energy used to compensate for the physical impairment. A person expends a lot of energy to walk with a weak leg or poor balance. Studies have shown that disabled individuals use twice as much energy to perform the same function as an able-bodied person. As well, physical disability can result in deconditioning adding further to the problems of both fatigue and weakness.
Unfortunately many of the medications used to treat MS symptoms have the potential to cause sedating side effects. In particular, drug therapies for pain, spasticity and tremor all have sedating properties that may intensify the problem of fatigue.
We all know how we feel after little or no sleep. We usually feel draggy, have poor concentration, are irritable and even unwell. Disrupted sleep is quite common in MS for many reasons such as frequent voiding, muscle spasms, pain, anxiety and inactivity.
When tired we do not feel like cooking a meal and tend to go for fast and snack-like foods. These are usually high in carbohydrates but low in nutrition. They may give us a quick energy boost but this is not sustained and often leads to greater fatigue. Missing a meal, especially breakfast, is a common habit for many. Food is fuel and missing meals depletes the body’s energy resources. Fluid is another important resource. Hydration is essential for circulation, elimination of toxins and as well our complexion.
It is not uncommon to reduce or limit one’s activities to conserve energy but this in fact can add to the problem of fatigue and weakness. In addition, inactivity may increase the risk for other medical conditions such as high blood pressure, obesity or reduced bone density. Studies have shown that regular exercise improves fatigue as well as one’s sense of well-being.
Secondary medical conditions
Fatigue is a common symptom for a number of medical conditions including: depression, diabetes, infection, thyroid and blood disorders. If one experiences an unexplained change in their level of fatigue they should see a physician to rule out other causes. Most of these conditions can be effectively treated.
Management of MS Fatigue
Fatigue for the most part is a subjective experience. It is invisible to others making it difficult for family, friends, co-workers and health practitioners to fully understand the impact this problem has on the individual. As well, individuals experience and cope with their fatigue differently and what may work well for one person may not help another. The first step in managing MS fatigue is to have an understanding of the nature of the problem, what factors may be contributing to it and what makes it better.
There are medications that can reduce MS fatigue. Treatment response is quite variable with notable improvement for some and modest or no fatigue reduction in others.
Amantadine (Symmetrel) is an antiviral agent used to reduce the risk of influenza infections. It also helps increase dopamine (neurotransmitter) activity in the brain. It is unclear how the medication works in MS fatigue but it seems to act as a stimulant.
Alertec (Modafinil) is another central nervous system stimulant but differs from amphetamine-like drugs. The newest addition to the fatigue management medications, it is used in the treatment of excessive daytime sleepiness associated with narcolepsy. However, recent studies have shown benefit in MS fatigue. Unfortunately drug coverage remains limited at this time.
Prozac/Zoloft (Fluoxetine/Sertraline) Both of these medications are selective serotonin reuptake inhibitor (SSRI) antidepressants used in the treatment of depression and fatigue. These antidepressants influence serotonin levels in the brain, helping to improve mental alertness.
Other Fatigue Management Strategies
• The ability to ask and accept help
• Work smart--prioritize activities
• Minimize energy expenditure by using assistive devices and mobility aids
• Organize your environment
• Plan ahead
• Do pleasurable activities--hobbies, listen to music, read or chat with friends
• Allow time for rest periods, even 15-20 quiet minutes can help
• Regular sleep schedule, treat symptoms that disrupt sleep
Enhancing resistance to fatigue
• Regular exercise has been shown to improve fatigue and have a positive impact on quality of life
• Good dietary habits of a well balanced meal at regular intervals prevents fatigue
• Adequate fluid intake of 6 to 8 cups/day
• Having a positive outlook can be emotionally uplifting and creates a sense of well-being. Feeling angry or worried all the time is emotionally and physically draining.
• If you are heat sensitive then plan activities in the cooler part of the day or in cool environments
• Keep iced water or drinks readily available
• Wear layered clothing that can be removed if needed
• Take a cool shower or bath before or after exercise
As with many aspects of MS, the cause of MS fatigue remains poorly understood. However, the ability to recognize those factors that may contribute to or worsen this symptom helps to provide more effective management.
Top of Page
Managing Day to Day
When illness or disability encroach on one’s life, plans and goals can be scattered. The ability to pick yourself up and start building a new plan is an important step in coping with and adjusting to illness. This is often described as “learning to live with it”. What follows is a list of practical tips about how to manage on a day to day basis:
• Take care of yourself — Eat well, remain physically and mentally active, as able, and get enough rest
• Balance rest and activity — Everyone seems to have a different balance point and what’s more, this point may vary from day to day. Schedule short rest breaks into your day and rest before you are tired. Moderation is the key — you don’t want to over do things but it’s important not to under do as well
• Work or play when you feel best — Try to do tasks when you have the most energy. Many people have told me morning is their better time so they try to complete more energy consuming tasks then
• Organize your work — Try to see if there are ways to break jobs down into smaller more manageable steps or make jobs easier. Delegate certain energy consuming tasks. Ensure items are close at hand to eliminate having to “run after things”
• Work in comfort — Try to have room temperatures well regulated; sitting (as opposed to standing) can save up to 25% of your energy
• Plan your activities and schedule your time — This helps you be aware of what you can and cannot do, helps you feel life is under control and helps minimize uncertainty
• Set priorities and simplify your life, if needed — What is the most important thing you need to do today?
• Get informed — Get as much information as you can to manage your MS. Use resources available to you and be an informed consumer
• Set realistic goals and expectations — Try to let go of things - don’t focus on what you cannot change (it’s not productive for anyone) but rather, look realistically at what can be changed or modified in your life if needed
• Relax — Be kind to yourself; remember stress is fatiguing so try to relax
• Try and develop a support network (if you don’t already have one)
• Make time and save some energy for fun and for things you find rewarding.
• Be flexible and open to change — Scheduling activities is beneficial, but try and maintain some flexibility so you can incorporate changes/new events as they occur
While you can’t ignore the effects of MS on your life, you can try to take control and manage your symptoms. Hopefully these tips have provided some practical ideas which will allow you to seize new opportunities and achieve your goals in the days ahead.
MS and Sexuality
It has been estimated that approximately seventy percent of people living with Multiple Sclerosis will experience sexual dysfunction. Although prevalent, sexual dysfunction is often a symptom that people are reluctant to discuss. They may feel embarrassed or may feel that they are the only one to experience such a difficulty. Given the high occurrence of sexual dysfunction in people living with Multiple Sclerosis, it is hoped that “feeling like you are the only one” will not be a reason for avoiding the symptom in discussion with your physician and health care team. It is our job as a health care team to develop an atmosphere in which you will feel a comfort in discussing your questions and concerns.
It is not surprising that sexual function is affected by Multiple Sclerosis. Sexual function relies on a healthy nervous system. The inflammation and damage caused in the central nervous system by Multiple Sclerosis can have a direct impact on sexual function. However the expression of our sexuality is not just a matter of function. Sexuality encompasses many aspects of our lives including our body image, our self image, our relationships, and our roles. Multiple Sclerosis can alter body image, self image, relationships and roles. When we consider the impact of Multiple Sclerosis on sexual function we need to recognize the aspect of central nervous system damage as well as the other “byproducts of MS” that can also impact on sexuality. With open honest communication between partners and between patients and health care professionals there are ways to compensate for the changes that Multiple Sclerosis can bring to sexuality.
Changes in the area of sexual function can vary in type and in degree. Men with MS may experience impotence. They may also have some difficulty with ejaculation. Women with MS may experience changes in lubrication and orgasm. Both sexes will report changes in sensation and decreased libido. Men experiencing erectile dysfunction need to have a medical assessment generally performed by a urologist. Based on the findings from this assessment, medication such as Viagra or aids such as a vacuum pump may be recommended. Similarly women experiencing changes in sexuality will require a full medical assessment. Lubrication changes can be dealt with effectively through the use of water soluble lubricants. People with sensory changes will need to explore other areas of their bodies which now may have more heightened sensation and may bring pleasure. Although reporting decreased sexual desire, many people will experience pleasure with sexual intimacy once it is initiated. People living with Multiple Sclerosis may need to initiate sexual intimacy in the absence of sexual desire. This requires looking at sexuality in a different way. Sexual intimacy is not seen as a response to a desire but rather an activity that leads to pleasure once initiated.
People often complain of secondary symptoms that impact negatively on their sexuality. Fatigue is a common complaint. Bladder and bowel symptoms, spasms and pain are also experienced by many people as a deterrent to the expression of sexuality. Lifestyle changes and possible medication can help with fatigue management. Partners may also have to look to modifying the timing and intensity of sexual intimacy to accommodate “higher energy” times of the day. Bladder and bowel symptoms need to be assessed medically and medications may be beneficial. For spasms and pain, medications are an option. Experimentation with different positions that may be more comfortable can also help with spasms and pain. Counseling about coping strategies for dealing with these secondary challenges to sexuality may be beneficial for partners.
The impact of Multiple Sclerosis on how people view their worth , their body, their relationships, and roles can also affect sexuality. Depression is a symptom many people with Multiple Sclerosis will experience in their lifetime. Depression can impact on sexual desire. Depression is a symptom of MS that can be treated with good success. This treatment may include medication as well as counseling. As MS impacts on physical function people can experience an altered sense of their body and how attractive it is. They may also feel that due to changes in their roles as mother, wife, worker, etc. they are not as “valuable” as a person. Feelings of inadequacy in these areas of life can also lead to decreased sexual desire. Counseling in respect to redefining the “worthwhile self”, irrespective of the changes that MS has brought, can be beneficial for people.
Sexual dysfunction is a common symptom for people living with Multiple Sclerosis. It is a symptom that can be assessed and treated with success. Communication is key to this assessment and treatment. People need to communicate with their health care team. Partners need to communicate with each other. Medications, modifications to sexual activity and counseling can help people to maintain healthy, satisfying sexuality.
Top of Page
MS and Dietary Supplements
The Internet is saturated with literature on alternative therapies for Multiple Sclerosis. Dietary supplementation with herbal preparations is one type of therapy that is growing in popularity as people look towards a “natural” way to cure or alleviate the symptoms of their illness. Many Internet sites provide a wealth of scientific rationale and convincing personal testimonials however references to credible, peer-reviewed scientific literature are not provided. In addition, many sites are disguised as informative only, yet an accompanying order form or link to an advertisement are usually provided for the specific product the author recommends. This should cause one to ask the question: how objective is the information the author is providing? Three supplements commonly recommended by Internet sources are described below.
1) Non-vitamin Antioxidants
Sold under names: Pycnogenol, Oligomeric Proanthocyanidins (OPCs), Maritime Pine Bark Extract, Grape Seed Extract (all belong to class of chemicals named Flavonoids)
Non-vitamin antioxidants work better than vitamin antioxidants to reduce free-radical induced damage in MS. Additional claims state that these substances aid MS patients by strengthening the blood brain barrier.
Antioxidants are proposed to serve as scavengers of free radicals which are thought to cause damage to cells resulting in the development of many degenerative diseases. A search of MEDLINE, an on-line medical database, revealed no studies specific to pycnogenol etc. and MS. More research is needed to determine whether flavonoids or any antioxidant supplements are safe and effective for the treatment of MS. There is some clinical evidence suggesting pycnogenol is effective in the prevention of conditions such as chronic venous insufficiency and atherosclerosis however further research into the area of flavonoids is warranted before these substances can be promoted as effective therapies in MS.
2) Ginkgo biloba
Ginkgolides (the active chemical components in Gingko) have anti-oxidant, anti-coagulative (anti-clotting) and anti-inflammatory effects making Ginkgo an effective therapy for MS attacks.
A large clinical trial in France revealed that there was no difference between those who received supplements and those who received placebos, concluding that ginkgolides were NOT an effective treatment for Multiple Sclerosis attacks. Studies reporting the effects of Ginkgo biloba on the progression of MS have not been published. There is some clinical evidence to suggest a positive association between Ginkgo and improved cognitive function in healthy young individuals however, there is no current evidence to suggest Gingko is beneficial in MS.
3) Evening Primrose Oil
Gamma-linolenic acid found in evening primrose oil, is an effective treatment for MS because it promotes the synthesis of a type of biological compound (Prostaglandin E1) which is known to have anti-inflammatory and anti-clotting properties.
The rationale for supplementing evening primrose oil is based on the finding that people with MS were found to have reduced levels of essential fatty acids in their blood. This finding was proposed to be a cause of MS leading to the theory that supplementing the diet with such fatty acids would lead to a reduction in MS symptoms and slow the progression of the disease. These issues are the topics of much controversy and conflicting research. There is minimal research on the effectiveness of evening primrose supplementation for MS patients and the results do not seem too promising.
There is a popular misconception that all dietary supplements are natural and therefore must be safe. Some supplements have shown no toxic effect in humans. The worst case scenario is that these products produce no effect at all, resulting only in injury to your bank account. However, many supplements contain potent active ingredients that may produce ill-effects when taken in excess or when used in combination with prescription medications. It is for this reason that it is important to tell your dietitian or physician if you are consuming supplements regularly.
What are the benefits of regular physical activity for people with MS?
Everyone with MS can benefit from some sort of physical activity, not just newly diagnosed individuals. Scientific research has shown that exercise has many benefits including:
• improved flexibility/ maintenance of joint range of motion
• improved endurance
• improved muscle strength and endurance
• improved energy level
• better sleep
• improved sense of general well-being.
Top of Page
Nutritional Factors and Multiple Sclerosis
A summary by Ashton F. Embry
Introduction- To understand how nutrition plays a critical role in multiple sclerosis (MS) it is essential to understand the basic disease process of MS. Most cases of MS are due to autoimmunity, which means one's own immune system is attacking their body. In MS the white blood cells of the immune system are attacking myelin, which is the substance which wraps around nerve cells in the central nervous system (CNS). The progressive loss of myelin results in a variety of disabilities.
MS Disease Process- Extensive research has revealed that there are three main factors that cause a person's immune system to attack and destroy their myelin.
Genetic Susceptibility- It appears as if about .5% of northern Europeans carry the genes that make them susceptible to MS. People of other heritages tend to have a much lower susceptibility.
Immune activators- The immune system is activated by the introduction of foreign proteins into the body. Autoimmune disease is mainly caused by foreign proteins which have a molecular structure similar to self proteins in the body. Thus, when immune cells are activated against such foreign proteins, the immune cells also attack similar-looking self proteins. In MS, self-proteins in myelin in the central nervous system are "mimicked" by foreign proteins and consequently attacked by the immune system.
Immune Suppressants- The activation of immune cells against one or more self proteins seems to occur in many people, especially following an infection. Thus the immune system has evolved a system of shutting down such autoimmune reactions before they cause any noticeable damage. Persons with MS seem to have a defective immune suppressant mechanism due to various deficiencies. This allows autoimmune reactions to get out of control and to cause damage to the central nervous system.
Nutritional factors play a significant role in MS by contributing to both the deficiency of immune suppressants and an overload of foreign proteins which activate the immune system against the central nervous system. Thus the keys to using nutrition for controlling MS are to:
Increase the intake of nutrients which help the body suppress autoimmune reactions.
Avoid eating foods which contribute to the activation of the immune system against self and the occurrence of autoimmune reactions.
Suppressing Autoimmune Reactions- Notably there are two nutrients which are effective in suppressing the immune system in the central nervous system. These are vitamin D and omega three essential fatty acids. Not surprisingly these nutrients are in very short supply in our society and persons with MS are very deficient in them. By greatly increasing their intake, persons with MS can help the body suppress autoimmune reactions.
Research has shown that a vitamin D supply of about 4000-5000 IU is required every day for optimal functioning. The main source of vitamin D is the sun and Canada is much too far north to allow anyone to obtain an adequate supply of vitamin D from the sun on a yearly basis. A few foods have some synthetic vitamin D added to them but this amount is very small and is no where near enough. Thus to ensure an adequate supply of vitamin D, a person with MS should take a daily 4000 IU supplement which is readily and cheaply obtained at most drug stores (Jamieson and Natural Factors make a good product). Such an amount has been shown to be safe and to be well below any toxicity level.
Omega three fatty acids are found in substantial quantities in only a few foods. The best source is fish with fatty fish such as salmon and mackerel being the best. Thus persons with MS should eat fish at least three times a week. Salmon oil supplements are also a convenient way of increasing one's supply of these essential fatty acids. Flax also contains a lot of omega three EFA and a tablespoon of flax oil every day is another good way of obtaining such a nutrient.
Avoiding Immune Activators- Infectious agents are one source of foreign proteins which active one's immune system to attack self. However it is often difficult to avoid contracting common infections. Another main source of foreign proteins, which have the potential to activate the immune system against self, is our food supply. Studies have shown the foods that have the greatest potential to cause autoimmune reactions are dairy, gluten grains (wheat, rye ,barley and oats), legumes (beans) and yeast. Thus persons with MS should avoid eating anything which contain these food types.
The types of fats eaten can also affect immune activation and saturated fat (animal fat) and omega six essential fatty acids (vegetable oil) can be problematic. Thus persons with MS should use mainly olive oil (monosaturated fat) in conjunction with fish oils to provide most of their fat intake. In order to greatly reduce saturated fat intake, red meat should be avoided with skinless breast of chicken and fish providing most of the protein supply.
Summary- Nutritional changes can be very effective in controlling MS and slowing or halting disease progression.
The key changes are:
Take a 4000 IU supplement of vitamin D every day
Eat fish at least three times a week and use a flax oil supplement
Stop eating any food that contains dairy products, gluten grains (wheat, rye, barley and oats), legumes and yeast
Stop eating red meat and greatly reduce the intake of saturated fat.
Use mainly olive oil for fat supply
Use mainly skinless breast of chicken and fish for protein supply
Avoid any food which causes an allergic reaction as determined by either a body reaction or a blood test
Take a variety of supplements to enhance health and heal various systems.
This nutritional regime can be used in conjunction with any of the current MS drugs.
Optic neuritis is the inflammation of the optic nerve, the nerve that transmits light and visual images to the brain and is responsible for vision.
According to the National Multiple Sclerosis Society, 55% of people with MS will have an episode of optic neuritis. Frequently, it's the first symptom of the disease. Although having optic neuritis is very suggestive of MS, it does not mean that a person has or will get MS.
The symptoms of optic neuritis are the acute onset of any of the following:
Graying of vision
Blindness in one eye (usually)
Double vision occurs when the pair of muscles that control a particular eye movement are not coordinated due to weakness in one or more of the muscles. Although annoying, double vision usually resolves on its own without medical treatment.
Uncontrolled Eye Movements
Uncontrolled horizontal or vertical eye movements, called nystagmus, is another common symptom of MS. Nystagmus may be mild or it may be severe enough to impair vision. Some drugs and special prisms have been reported to be successful in treating the visual deficits caused by nystagmus.
Temporary blindness in one eye may occur at the time of an acute exacerbation of MS. An exacerbation -- also known as a flare -- is a sudden worsening of an MS symptom or symptoms, or the appearance of new symptoms, which lasts at least 24-hours and is separated from a previous exacerbation by at least one month.
Temporary blindness is most often due to optic neuritis.