Krupp’s Fatigue Severity Scale
Many studies of MS-related fatigue have used the Fatigue Severity Scale to identify fatigued patients. Initially designed to identify common features of fatigue in both MS and lupus patients, the Fatigue Severity Scale assesses the impact of fatigue on multiple outcomes, with a physical focus.58 Each of 9 responses is provided on a 7-point Likert scale. Prior studies have shown acceptable internal consistency and stability over time, and sensitivity to change afforded by clinical improvement. The Fatigue Severity Scale has been shown to differentiate between subgroups of patients with MS, chronic fatigue syndrome, and primary depression. Moreover, the scores correlate with other scales commonly used in MS, including the Modified Fatigue Impact Scale and Fatigue Descriptive Scale.48
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.
Talk With Others Who Understand
MyMSTeam is the social network for people with multiple sclerosis and their loved ones. On MyMSTeam, more than 190,000 members come together to ask questions, give advice, and share their stories with others who understand life with multiple sclerosis.
Do you take vitamins or other supplements to help with MS? Have you discussed supplements with your doctor? Share your experience in the comments below, or start a conversation by posting on your Activities page.
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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.
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.
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Types Of Multiple Sclerosis
There are three main types of MS that are characterized by the course of disease:
While MS itself is generally not fatal, complications of advanced disease can be. Loss of brainstem function can lead to respiratory failure and disability can significantly reduce activity levels, increasing the risk for cardiovascular disease, pneumonia, sepsis, and uremia.22 As a result, the life expectancy for people with MS is about 7 years less than people without MS .2,23
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Evidence For Pharmacological Interventions For Fatigue In Persons With Ms
Currently, different pharmacological agents are used for treatment for fatigue in pwMS, which include amantadine, modafinil, and pemoline . Modafinil, a wake promoting agent that selectively works in the hypothalamic pathways used in narcolepsy, has been reported to improve fatigue in progressive MS . The efficacy of pemoline, a CNS stimulant, is still unclear . Amino pyridines and amantadine have been trialed however, systematic reviews failed to find evidence for efficacy or safety for their use . There is empirical support for use of antidepressants in MS-related fatigue, as depression is considered to be one of the major contributing factors .
One comprehensive systematic review exploring efficacy of different pharmacological treatments on non-specific fatigue in palliative care included 10 studies investigating amantadine , pemoline, and modafinil in pwMS . The authors reported mixed results with weak and inconclusive data. Amantadine was found to demonstrate some improvement in fatigue in pwMS . Both pemoline and modafinil failed to demonstrate a significant effect for management of fatigue in pwMS .
Commonly used pharmacological agents for fatigue and MS are summarized in Table 3, along with indications, doses, and side effects.
Table 3. Commonly used pharmacologic treatments for MS-related fatigue.
Summary
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Clinical Aspects Of Ms
In clinical practice, the first step is to investigate whether there is an underlying cause or trigger for the fatigue, which needs to be treated before starting any specific treatment for it. Causes and triggers of fatigue may be related to MS, such as pain, night spasms and urine dysfunction, which can lead to sleep disturbances and increased tiredness, or being unrelated to MS, as it is described in Table Table11.
What Types Of Fatigue Occur With Ms
One common type of fatigue in people with MS is known as lassitude. Lassitude is a type of fatigue that usually happens every day and gets worse as the day goes on. It can come on suddenly, occur early in the morning, and get worse if you get overheated. This type of fatigue can make even daily tasks hard to take on.1
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The Chalder Fatigue Scale
One of the most well-known fatigue scales, the Chalder Fatigue Scale was created for chronic fatigue syndrome patients. This 14-item instrument quantifies fatigue intensity in terms of physical and mental domains.55 Each item is quantified by a numeric value on a Likert scale, and a sum score is calculated. Higher totals indicate more fatigue. Advantages of this instrument include its ease of use and brevity: it can usually be completed within 2-3 minutes. Although it has demonstrated good internal consistency in patients with chronic fatigue syndrome, MS-specific assessments of validity and consistency for this instrument are lacking. Nonetheless, some investigators still regard The Fatigue Scale as a valuable instrument for clinical studies.56,57
Managing Fatigue In Multiple Sclerosis
Experts recommend several fatigue management strategies that include evaluating and treating any secondary causes , followed by drug therapy, exercise, and self-management .
There is limited information about the effects of disease-modifying therapies on MS-related fatigue. Some studies suggest interferon- and glatiramer acetate as effective DMTs to reduce fatigue. No such effect has been observed with teriflunomide, dimethyl fumarate, or alumtuzumab.
A published trial showed that alfacalcidol reduced fatigue. Carnitine was also shown to improve fatigue in another study.
The FDA-approved therapy 4-aminopyridine is used to treat MS-related walking ability, and has been shown to improve fatigue in studies such as this one.
Other effective strategies include rehabilitation and cognitive behavioral therapy .
Fatigue can also be significantly eased by treating underlying sleep disorders, like using continuous positive air pressure for sleep apnea, drug therapy or CBT for insomnia, and medications for restless leg syndrome or other and nighttime limb movements.
A 2016 study gave an overview of both the challenges in treating fatigue in MS patients, and the various approaches shown to be effective. Its authors suggested a comprehensive approach, including self-management strategies, rehabilitation, CBT, and the treatment of underlying sleep disorders and potentially other comorbidities.
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How Ritalin Makes Me Feel
Ritalin is a little different for me. While Nuvigil definitely “promotes wakefulness,” Ritalin does precisely what I would have expected a “stimulant” to do. When I take Ritalin, it’s like my brain is ticking a little faster. I feel like I drank 10 cups of coffee, and I can think a bit more clearly, but it doesn’t last long. Maybe a few hours? And if I only take one pill, those few hours are often followed by a huge crash, which can render me more fatigued than I was in the first place. It doesn’t seem like everyone deals with that crash, but I’m not everyone, I’m me. Again, everyone is different. Either way, my point is, it “works,” which again, I would define as “giving me the strength to carry the crushing weight of fatigue” and not as “eliminating the weight of fatigue.”
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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Relieving Fatigue Through Cooling
Research has shown that nerves with damaged myelin are sensitive to changes in temperature. A rise in temperature may cause nerve conduction to be less efficient, whereas a reduction in temperature may allow more signals to be transmitted across a damaged nerve.
The idea of cooling people with MS to alleviate symptoms has been researched and practiced for many years, but practical methods of cooling an individual had not been perfected until the 1990s. At this time, MSAA and NASA joined forces to develop and test a cool suit.
Cooling someone too quickly such as taking cold baths or sitting close to the air conditioner can cause shivering and vasoconstriction. This reaction does not help to alleviate MS symptoms. By slowly cooling down the body, an individual with MS may experience improvement in areas of physical performance, cognitive processing, and motor function. Cooling also significantly reduces fatigue, helping a person with MS perform his or her daily activities.
Controlled cooling is now achieved through passive cooling garments. These are portable and allow the wearer to enjoy symptom relief indoors or out. Passive cooling garments, such as a vest and wraps for the neck, wrists, or ankles, use ice or gel packs to give people with MS immediate and simple relief from heat and certain MS symptoms. Some passive garments are dampened and chilled before use.
Take Breaks And Pace Yourself
Pacing yourself and taking breaks during the day can help you stay healthy, says Wentink.
When Im drained and continue to push, I think Im putting myself at risk for getting sick, he says. When I feel fatigued, I take it as a sign that I need to step back and take a break.”
Symptoms tend to get worse when severe fatigue sets in, says Wentink. I try to slow down before that happens because I dont want to bring on a relapse, he adds.
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A Different Kind Of Tired
Before learning how to beat fatigue, its useful to understand the types of fatigue you may face when you have MS.
Researchers have started to identify a number of distinct characteristics specifically associated with MS. They define it as quite different from garden-variety tiredness:
- Onset: It can begin suddenly.
- Frequency: It often occurs every day.
- Time of day: It can occur in the morning, despite having slept the night before.
- Progression: It commonly worsens throughout the day.
- Sensitivity to heat: Heat and humidity may aggravate it.
- Severity: It tends to be more severe than other types of fatigue.
- Effect on activities: Its more likely than regular fatigue to disrupt your ability to perform everyday tasks.
Are There Supplements That May Be Useful In The Prevention Of Attacks
Note: Please refer to the Passport to Whole Health, Chapter 15 on Dietary Supplements for more information about how to determine whether or not a specific supplement is appropriate for a given individual. Supplements are not regulated with the same degree of oversight as medications, and it is important that clinicians keep this in mind. Products vary greatly in terms of accuracy of labeling, presence of adulterants, and the legitimacy of claims made by the manufacturer.
The use of dietary supplements in MS can be an overwhelming topic. Supplement options may include those that are intended to modify the disease process, as well as those intended to treat specific MS-related symptoms. This section focuses on supplements with potential disease-modifying properties.
There are several challenges in determining appropriate supplements to use in MS. First, the potential options are numerous. Second, the majority of trials on supplements are small or based on experimental models of MS in animals. It is usually premature to draw definitive conclusions from these types of studies. Lastly, many supplements have theoretical effects on the immune system. Some experts in the field recommend avoiding anything that is potentially stimulating to the immune system. This issue is addressed in more detail below.
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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.
Lessening Ms Fatigue Without Medications
The NMSS and the Cleveland Clinic both suggest fatigue-reducers such as exercise, physical therapy, and relaxation therapy. Multiple Sclerosis News Today patient columnist Jessie Ace shared some other ideas a few months ago. But I think most of us have tried nonmedicinal strategies and only turned to medications when those therapies didnt help enough.
I tried going without my 100 mg dose of Provigil in the morning yesterday, and I didnt feel much more tired in the late afternoon than I usually do. I think Ill try this unscientific experiment again, but over two or three days, to see what happens.
Has there been fatigue-relieving magic in the pill Ive been taking all these years, or has it all been in my head?
What has your experience been? Please share in the comments below. Youre also invited to visit my personal blog at www.themswire.com.
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Tip : Manage Your Medications
If youre taking medications for other symptoms, check their side effects to make sure they arent adding to your fatigue.
Talk to your doctor about each medication you take and work together to determine whether you can stop taking those that can cause fatigue.
In terms of medication to help ease fatigue, your doctor can help you decide whats right for you.
While some medications can help with fatigue management, the Cleveland Clinic advises against using medications to treat tiredness.
This is because you may already be taking other medications for your MS, and its best to limit the number of drugs you take when possible.
However, everyones MS symptoms are different. If you try the tips in this article and nothing works, there are medication options to help reduce fatigue.
They include amantadine and modafinil , two drugs used off-label.
Theyre still being studied as a treatment for MS fatigue, which means your insurance may not cover them for this purpose. For more information about these drugs, talk to your doctor.
OFF-LABEL DRUG USE
Off-label drug use means a drug thats FDA approved for one purpose is used for a different purpose that it hasnt yet been approved to treat.
However, a doctor can still use the drug for that purpose. This is because the FDA regulates the testing and approval of drugs, but not how doctors use drugs to treat their patients.
So, your doctor can prescribe a drug however they think is best for your care.
