What If Oral Medications Wont Work For Me
Since Tecfidera did not work for me, my neurologist sent me to an MS specialist who then put me on Ocrevus, an infused medication. While I did not have any new lesions while on this medication, I found myself fatigued, in a lot of pain, and bedridden for the six months between infusions. I can only share my experience.
As you know, MS is different for every person. The same holds true for the medications. Many people swear by Ocrevus and have shown major improvement while on it. I felt better once it left my system, so I swore off medications for a little over a year.
My most recent trial was Tysabri, an infused cousin to Ocrevus. Ive been taking it for almost one year. It took about six infusions for my body to adjust, but after that time, it was okay. Other infusion medications for MS include Lemtrada and Novantrone.
Some choose the oral route because its easier and much less time consuming than sitting at a hospital for hours hooked up to an IV for an infusion. I have no experience with the next type of medication, self-injectables, but I have heard and read mixed reviews.
If you choose a self-injectable treatment, there are some tips Ive found to help make you more comfortable :
- Rotate your injection site to protect your skin
- Take treatment as prescribed
Always remember to talk to your doctor or healthcare professional about how to exercises or other resources to help minimize your pain and help you feel more comfortable.
What Can I Do If I Have Fatigue
Although fatigue cant be cured, there are techniques that can be used to reduce the impact it has on your daily life.
There are two main aspects of managing fatigue.
- Ensuring you have the best levels of energy available eg, through eating healthily, staying active, getting enough sleep, reducing stress and improving your mood.
- Learning how to use that energy in the most efficient way eg, by planning in advance, prioritising and delegating tasks, and pacing yourself.
Although the key person in fatigue management is you, health professionals, such as an MS nurse, occupational therapist or physiotherapist, can support you through this process and help you develop strategies to manage your fatigue.
Do reach out to them if fatigue is an issue and you need some advice and support you don’t have to manage fatigue on your own.
Do Drugs Really Help Fatigue
Thereâs conflicting evidence about which drugs, if any, ease MS-related fatigue. Some studies show that amantadine may have a moderate effect for some people. Other research found that modafinil or methylphenidate could improve wakefulness in people with excessive daytime sleepiness .
Some people with MS say drugs donât get rid of their fatigue. But medicine can keep them awake and make their tiredness easier to handle.
Even if a drug helps you, it may not work as well over time. Tell your doctor if that happens. You may need to take a âdrug holiday.â That means youâll quit for a weekend or a few weeks. Your doctor will let you know when you can start your treatment back up again.
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Evidence Maps On Treatments For Fatigue In Ms
A broad range of fatigue interventions for multiple sclerosis exists, including drugs, exercise, cognitive behavioral therapy, self-management strategies, and non-invasive brain stimulation. However, important questions remain regarding efficacy. The development of these evidence maps involved a systematic identification of relevant research studies of fatigue interventions in MS, along with data extraction, meta-analyses, and strength of evidence ratings.
These maps were created, in part, to help patients and those who care for them make informed decisions for a condition with multiple interventions available that typically may be selected based on individual preference or individual characteristics. The maps were primarily developed as pilots, to explore various methodologic issues encountered in this emerging form of evidence synthesis.
For the best map interaction experience, we recommend viewing these evidence maps on desktop-sized devices in a Chrome, Safari, or Firefox browser.
Fuel Your Body With High
Theres no specific diet for MS, but the NMSS recommends following a healthy diet thats low in fat and high in fiber. According to the NMSS, the foods you choose to eat affect your energy levels.
Consuming simple carbohydrates such as sugary foods and highly refined foods such as white bread, white rice, or pasta can cause blood sugar levels to spike and crash. The crash can exacerbate preexisting fatigue in persons with MS, explains Barbara Giesser, MD, neurologist and MS specialist at Pacific Neuroscience Institute at Providence Saint Johns Health Center in Santa Monica, California.
How can you avoid this? Regularly choosing high-quality foods can help, says Dr. Giesser. Good options include:
- Protein-packed options, like beans, nuts, and lean animal proteins
- Fiber-rich foods, like oatmeal, brown rice, and high-fiber breakfast cereals
- Fresh fruit and leafy green vegetables
- Fat-free or low-fat yogurt
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Take Good Care Of Your Overall Health
Maintaining a healthy weight and optimal blood pressure and cholesterol levels, and avoiding type 2 diabetes can all help with MS fatigue, says Dr. Conway.
“A healthy diet and a regular exercise program can really help, says Cohen. If you are physically out of shape and overweight, everything you do requires more energy.
Fatigue In Patients With Multiple Sclerosis
Primary Versus Secondary Fatigue
Clinically, fatigue has been divided into primary fatigue, a part of the MS disease process and secondary fatigue, in which fatigue is a complication of MS .
Figure. Primary and secondary causes of MS fatigue.
Nonpharmacologic Treatment
Nonpharmacologic approaches to MS-related fatigue include energy-conservation techniques, exercise, attention to sleep hygiene, and napping. Energy-conservation techniques are often prescribed through consultation with occupational therapy. Most, but not all, studies suggest moderate graded aerobic exercise has benefit in MS-related fatigue.11 The Cochrane systematic review of exercise in MS showed at least a modest benefit in MS fatigue, in contrast to many of the medications used to treat MS fatigue.12 Sleep hygiene may be helpful to maximize sleep efficiency and thereby avoid chronic sleep deprivation. Many patients with MS use complementary and alternative medicine for MS-related fatigue, but the efficacy of supplements and most other CAM therapies is not proven. Prokarin, a proprietary blend of histamine and caffeine applied via skin patch, in a small double-blind pilot study of 22 patients improved fatigue symptoms compared to placebo as measured by the Modified Fatigue Impact Scale .13 Low-dose naltrexone had a positive effect on quality-of-life measures in a single-center pilot study.14 Data for other CAM therapies are nonexistent.
Pharmacologic Treatment
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Tip : Conserve Your Energy
Energy conservation isnt just important for the environment. Its also a key principle for those with MS.
Whats your best time of day to get things done ?
If you notice that you feel less fatigue in the morning, take advantage of your extra energy to complete tasks such as shopping and cleaning. You can then conserve your energy later when you feel more fatigued, knowing youve already accomplished key tasks for the day.
People with MS may be especially sensitive to heat. As a result, they may experience more fatigue when they become overheated or are in a warmer environment. Try these techniques to cool down:
- Use air conditioning as needed, especially in the summer months.
Practice Mindful Movement Such As Yoga Or Tai Chi
Forms of exercise that include some form of meditation and mind-body connection, such as tai chi and yoga, may be helpful for MS fatigue, according to research published in BMC Neurology. And another review published in PLoS One in February 2017 found that tai chi may benefit quality of life among people with MS, but more research is needed to confirm this.
Yoga can be beneficial, as it incorporates mindfulness, stretching, and low-impact exercise, says Conway. There havent been a lot of studies about this, but in my personal experience, it can help, he says.
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What Causes Fatigue In Ms
The causes of fatigue in MS are not well understood. Fatigue is thought to result from different factors, partly caused by multiple sclerosis itself and partly by other factors that affect people with MS more than those without the condition.
Primary fatigue is thought to be due to nerve messages from your brain and spinal cord having to navigate the areas of damage caused by your MS. It takes more energy to send and deliver messages to other parts of the body, like the muscles in your arms and legs, causing a build-up of fatigue.
Secondary fatigue is caused by the effect of living with MS. For instance, MS symptoms such as depression, being in pain or by having sleep disturbed by spasms or needing to go to the toilet more often can all make fatigue worse.
Fatigue may also occur as a side effect of various medications or be the result of inactivity, stress, poor diet or an infection. If you have other medical conditions, this can also cause or worsen fatigue.
Fatigue for many people is the result of a combination of several factors which can make you feel tired and lacking in energy. Once youre aware of these factors, you can review whether they apply to you and begin making changes.
Cognitive And Psychological Interventions
Several studies have investigated cognitive training in pwMS aiming mainly to improve attentional deficits, communication, and memory . Overall evidence for beneficial effects of psychological interventions in management of fatigue in pwMS is scarce. A systematic review reported that cognitive behavioral approaches were beneficial in the treatment of depression and in helping people adjust to, and cope with having MS . However, the authors did not find any studies focusing on psychological approaches to managing fatigue in pwMS. Findings from a few studies evaluating fatigue as a secondary outcome showed inconclusive and/or non-significant improvements in fatigue management .
A recent RCT showed that an internet-based cognitive behavior therapy program MS Invigor8 was an effective treatment for MS-related fatigue . The CBT included eight tailored, interactive sessions with a clinical psychologist over 810 weeks. The treatment group reported significantly greater improvements in fatigue severity and impact as well as in anxiety, depression and quality-adjusted life years . Another RCT showed significantly greater improvements in fatigue in pwMS after eight weekly sessions of CBT compared to relaxation therapy . However, both groups showed clinically significant decreases in fatigue. ESs for reduction in fatigue from baseline to the end of treatment were 3.03 for the CBT group across the 8 months compared with the relaxation therapy group .
Summary
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How Ms Fatigue Is Different To Other Types Of Fatigue
Ordinary fatigue is described as a sensation of muscular tiredness and weakness. It is the tired feeling everyone experiences after an excessively busy day or a lack of sleep. It is the type of fatigue that is usually managed by rest and a good nights sleep. Ordinary fatigue is quite different to the fatigue experienced in MS.
Fatigue associated with MS is described as an overwhelming sense of tiredness that can occur at any time of the day without warning. MS-fatigue usually occurs more rapidly, lasts longer and takes more time to recover from than ordinary fatigue.
MS-fatigue can occur for no apparent reason or after relatively mild exertion, such as a short period of walking, writing or reading, with an immediate need to rest.
Review Your Current Medications
It may surprise you that the very medications you are taking for your MS symptoms may be contributing to your fatigue. Some include:
- Anticholinergic medications used to treat urinary incontinence
- Muscle relaxants used to treat spasticity
- Medications for treating tremor
Some disease-modifying MS medications can add to stress, which begets fatigue, as well.
Other medications that are commonly associated with fatigue include antihistamines for treating allergies and antihypertensives for treating high blood pressure. These medications are not used more often in MS than they are otherwise, but they can add to your already existing fatigue if you take them.
Speak with your healthcare provider about whether your medication could be adding to your fatigue or feeling of fogginess. Your practitioner may suggest switching your medications or changing the time of dosing.
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The Modified Fatigue Impact Scale
The Modified Fatigue Impact Scale, proposed by the Multiple Sclerosis Council for Clinical Practice Guidelines, has gained recognition among MS specialists as a reliable tool. Originally derived from the 40-item Fatigue Impact Scale , the MFIS contains only 21 items and offers a more multidimensional assessment: physical , cognitive , and psychosocial functioning . The total score is the sum of the 21 items. An abbreviated version that contains 5 items also exists. Besides its multidimensional features, other advantages of the MFIS include ease of use, good reproducibility, and strong correlation with FSS results .
Systematic approach to treating reversible causes of fatigue.
Tips To Conserve Energy
Use Adaptive Aids.Reachers, dressing aids, and other adaptive equipment can significantly help conserve energy when dressing, bathing, and performing other household and personal activities. Many of these items may be obtained through MSAAs Equipment Distribution Program . Please visit mymsaa.org or call 532-7667 for more information.
Shop from Home.Rather than using valuable energy walking around stores, use catalogs or order items online. In addition to avoiding the crowds and exhaustion from walking through stores or malls, ordering clothes allows you to try them on at your leisure when your energy level is highest. Many grocery stores also offer online ordering with either free delivery or a minimal charge for delivery.
Take Fewer Steps.Try to take care of as many things as possible in one room to eliminate extra trips.
Consider Telecommuting.A great way to conserve energy is to reduce the amount of time spent traveling to and from work. Ask your employer about working part of the week from home.
Dont Get Overheated.This can cause fatigue. Wear your cooling vest or other cooling apparel and try to go outside either early in the morning or later in the evening, when temperatures are at their coolest.
The following medications, among others, are prescribed for depression. These have been found to help lessen fatigue in certain individuals. Antidepressants may need to be taken for several weeks before seeing an effect.
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What Is The Research Team Doing
The research team is recruiting patients in southeastern Michigan and Seattle, Washington, who have problems with fatigue from MS. The team is assigning patients to one of three treatment groups by chance: CBT by phone with a therapist, modafinil, or a combination of both. The CBT treatment includes eight weekly telephone calls to help patients manage fatigue, followed by two check-in calls from a therapist the following month. The CBT addresses issues such as setting goals, improving sleep, and conserving energy. On the follow-up calls, patients make plans for managing fatigue in the future.
At the start of the study, over the 12-week treatment period, and 12 weeks after treatment ends, the research team is asking patients about their fatigue, other MS symptoms, sleep, social functioning, and quality of life. Study participants wear a sensor around their wrists to track their physical activity.
Across the three treatment groups, the team is comparing patients levels of fatigue, how well they follow their treatment plan, and any side effects. The team is also comparing how well the treatments work for patients with MS who have other conditions, such as depression, sleep problems, a disability.
Patients with MS, their providers, payers, and national and regional MS organizations are helping to design the study and recruit participants.
How Is Fatigue Related To Multiple Sclerosis
Fatigue is the most common symptom of multiple sclerosis . It occurs in 75 percent to 95 percent of patients with MS. Fatigue can occur at all stages of the disease. The symptom is not related to the severity or to the duration of MS. At times, fatigue interferes with function and is an important symptom to manage. There are a variety of ways to combat fatigue in MS.
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Management Of Fatigue In Persons With Multiple Sclerosis
- 1Department of Rehabilitation Medicine, Royal Melbourne Hospital, Melbourne, VIC, Australia
- 2The University of Melbourne, Melbourne, VIC, Australia
- 3School of Public Health and Preventive Medicine, Monash University, Melbourne, VIC, Australia
Fatigue is one of the most common symptoms of multiple sclerosis. Despite advances in pharmacological and non-pharmacological treatment, fatigue continues to be the disabling symptom in persons with MS , affecting almost 80% of pwMS. In current practice, both pharmacological and non-pharmacological interventions are used in combination, encompassing a multi-disciplinary approach. The body of research investigating the effect of these interventions is growing. This review systematically evaluated the existing evidence on the effectiveness and safety of different interventions currently applied for the management of fatigue in person with multiple sclerosis in improving patient outcomes, to guide treating clinicians.
Other Causes Of Fatigue
Some fatigue experienced by people with MS is not actually caused by the MS. For example, a person might feel fatigued due to poor sleep, infection, medications, or depression.
Medications taken to solve other problems can contribute to fatigue. If you look at your pill bottles, some say, May cause drowsiness or Do not operate heavy machinery while taking this medication. These warnings indicate that the medicine is sedating, i.e., it can make you tired. Medications that are used to treat bladder dysfunction, spacticity, and pain can cause fatigue in MS patients. If this is the case and you are experiencing fatigue, a good place to begin is to review all of your medications with your physician.
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