Fatigue

From: WebMD, David Spero, RN

Fatigue is more than feeling tired after a long day.  It’s an ongoing feeling of exhaustion that often does not go away even after a nap.  Fatigue is one of the most common and most disabling symptoms of MS. 

I can testify to the disabling part.  I’ve had weeks when I could barely get out of bed. Others agree. One user of our Facebook page commented, “I have just slept for 3 days with only 1- to 2-hour gaps. So fatigued it’s not funny. Can’t even eat without it draining my energy.”

Causes of MS Fatigue

MS fatigue has many causes.  Inflammation from the immune system’s attack on nerves is one. Nervous system struggling to adjust to myelin damage is another.  MS-related sleep problems or muscle weakness, urinary problems, pain, anxiety, and depression can all cause fatigue.

Fatigue often varies with our environment and behavior. When I get too warm, I can’t even sit up at my desk. After eating a big meal, I just want to fall asleep. If I overdo activities, I might pay for it with hours or days of fatigue.  I can avoid all these attacks by avoiding the triggering behaviors.

How Fatigue Affects Our Lives

MS is often called an invisible illness, and fatigue is the least visible part.  Family or friends might want us to do something, and all we can say is, “I’m not up to it.” They might think we’re making excuses, or they might stop asking, even though at other times we’re good to go.

For years, I noticed that I would get tired after eating, to the point of needing a nap. Then I found out about thermogenesis, the way the body heats up after eating.  I’m one of the many MS patients whose symptoms are worse when I’m warm, so thermogenesis can knock me out. Now I eat smaller meals and don’t have that problem. Protein raises body temperature more than other foods, so I never eat much protein at one time.

Warm air temperatures also exhaust me, like many people with MS.  I stay out of the sun on warm days and carry a little fan with me if I have to go out.  I make sure to stay hydrated, because bad things happen to me if I get warm or dehydrated. I might fall and not be able to get up.

It took me years to figure out that mental fatigue can be as dangerous as physical. I notice that when I’m warm or tired, I’m prone to misjudgments and stupid mistakes. I might try to reach something on a high shelf or trip over a shoe on the floor, things I would never do when not tired.  I might think I can carry something heavy, maybe something I could carry at my best but shouldn’t try when fatigued.  I’ve learned never to make important life decisions while fatigued.

Like most people with MS, I have good days and bad days.  On a good day, there’s a strong temptation to do all the things I couldn’t do on bad days, to live a month of life in a day.  When I do that, I pay with days or weeks of fatigue.  Sometimes we can accept that trade-off for a special occasion, but in general it’s important to keep some energy in reserve.

Physical therapists say it’s crucial to keep moving our bodies. Keeping still all day can add to fatigue.  Sometimes it’s hard to move, but you should try to find some way to exercise lightly.  Stretching and strengthening exercise make it easier for me to move.

There are medications for fatigue that work for many patients. The easiest one is caffeine. A cup of coffee or tea might pick you up. Green tea works for me. I hear from patients that prescription medicines such as Provigil can be great boosters.

At Least It Doesn’t Hurt

The good thing about fatigue is that we can be comfortable with it, as long as we have a good place to sleep.  It doesn’t hurt. Fatigue can be terribly depressing, though, keeping us from doing things we really want to do or need to do. Don’t be afraid to seek help from your doctor or a therapist or to take medicines for depression or anxiety if your MS is taking you there.

Don’t forget to breathe and to relax, meditate, or pray. Tension and stress can wear us out, and being at peace is the least tiring way to live.  For almost everyone, fatigue eventually goes away. For me, as long as I keep cool, it no longer bothers me, and I’m very thankful for that.

 

What’s New in MS Research

The Multiple Sclerosis Association of America (MSAA) is pleased to present its latest edition of “What’s New in MS Research.” This series of online articles is published periodically and features important information on topics ranging from highlights of major international MS conferences and updates on trials with experimental disease-modifying therapies, to new findings on the development of the disease, symptom management, and quality-of-life issues.

This latest edition of “What’s New in MS Research” features trial results from recent studies as well as updates on a variety of MS-related issues. Topics include:

• Positive results for the investigational treatment ublituximab
• The importance of identifying anxiety and depression in early MS
• Intriguing results with cannabis for bladder symptoms with MS
• Assistive devices that show the greatest strides
• And many other vital topics

Please read MSAA’s latest edition of "What’s New in MS Research." We hope you find these updates to be both informative and encouraging, providing help and hope to the entire MS community.

For additional information on the latest advancements in MS research, please also see MSAA’s archived educational webinar What’s New in MS Research: A Look Into the Future of Multiple Sclerosis Treatment — July 2021 featuring neurologist Barry Singer, MD.

 

MS Slide Show

 Interesting slide-show from WebMD -

https://www.webmd.com/multiple-sclerosis/ss/slideshow-multiple-sclerosis-overview?ecd=wnl_spr_070621_remail&ctr=wnl-spr-070621-remail_lead_cta&mb=q80%2F%40kIeuyYKtyaYzOxdbc6RVoMqf%400VkpmvpK5yEEQ%3D

 

Does Having MS Mean You Identify As Disabled?

 

 By Tamara K Sellman

In early April, I attended a virtual writers’ conference, immediately drawn to a group of workshops that prioritized the voices, ideas, and practices of writers with some sort of disability.

For instance, I attended a poetry panel discussing disfluent writers. The panelists focused on the challenges of writers with speech disabilities (dystonia, stuttering, dysarthria) caused by any number of conditions (cerebral palsy, deafness, neurological disorders).

Does having MS mean you're disabled?

Overall, these were wonderful workshops, perhaps the best of the entire conference. But in each case, a question was posed that left me wondering: As a person with MS, do I identify as disabled? The short answer? No.

This left me feeling a little out of place in the workshops, like a voyeur instead of a student. Which is weird. I left behind a healthcare career I loved because of MS. The circadian disruption of overnight shiftwork put me on a collision course with relapse that just wasn’t worth the risk.

Yet, I don’t feel like I qualify as disabled. To me, disabled means certain limitations prevent me from performing (forgive the healthcare jargon) “activities of daily living.”

Assessing my disability

After all, I can:

walk (even if sometimes it’s a crooked path)

talk (even if my words aren’t always forthcoming or I trip over them with a strange and unexpected slur)

maintain basic hygiene (even if I might need a nap after)

feed myself (even if annoyingly powerful stretches of hiccups make it hard to eat)

cook (even if I occasionally forget the pan on the stove until it’s too late and I have to start over)

read (even if weird MS fatigue blurs my 20/20 vision or wires cross, making comprehension temporarily impossible)

do basic math (even if cognitive fog obscures my focus and I need my smartphone’s calculator for the simplest computations)

Does that make me disabled? I guess it depends upon who you ask.

What does disabled mean?

The ordinary healthy person may consider a person disabled if they’re impaired in some obvious way. To them, a person in a wheelchair is disabled, but a person with cognitive fog isn’t. (Allow me to acknowledge the very active people in wheelchairs I know who cringe at the term disabled).

However, the ADA National Network defines disabled in strokes both broad and context-specific. You’re regarded as disabled if you’re:

impaired but it doesn’t substantially limit your activities

impaired and it does substantially limit your activities only as a result of the attitudes of others toward you

not impaired, but treated like you are

Meanwhile, your neurologist may use the Expanded Disability Status Scale (EDSS) to gauge your disability status. My EDSS score is 3.0 (or mild to moderate disability). I still don’t identify as disabled.

What does disability mean?

Aside from the negative social connotations attached to it, the term disability is a practical measure, less medical and more legal.³ In its formal application, disability implies an objectively measurable status of ability. It’s used to identify financial needs and justify financial support for those whose impairments prevent them from earning a living or paying for healthcare services or living expenses.

By this definition, I’m definitely not disabled. While I left a job voluntarily because of MS, I pivoted to a sustainable working arrangement and I’m not the household breadwinner.

Disability as a legal status is rather complex. The ADA’s definition of disability differs from the definition needed to apply for Social Security Disability benefits in ways that only a good lawyer can parse out. (The National MS Society can help you decide if you need to hire an attorney or advocate if need be).

I wonder if this is why I don’t identify as disabled. I don’t draw disability benefits, nor do I qualify for them in either scenario.

Disabled, disability - do these words even matter?

On a more existential level, I feel like I’m not disabled even if the ADA and EDSS say I am. I still conduct my days mostly unimpeded by occasional MS-related setbacks. I understand and recognize this privilege. And the last thing I want to do is co-opt the reality, resources, or support for those more clearly impacted by MS.

Yet the unpredictability of MS is not lost on me. Odds are, half of us with relapsing-remitting MS will develop secondary progressive disease within 10 years. Ninety percent of us will transition to SPMS within 25 years. With that transition comes a progressive accumulation of “legal” and “medical” disability. I'm in year 8, post-diagnosis. Might my 3.0 EDSS score suddenly jump to 6.0? Who knows? If that happens, and I can no longer work or afford my living expenses or healthcare bills, then these words, accurate or not, will matter, indeed.

 

On the Horizon: The Future of MS Treatments

 

By Benjamin Segal, MD, as told to Kara Mayer Robinson

We’ve come a long way in treating MS -- it’s been one of the biggest success stories in medicine. Over the last 20 years, there has been a revolution in drugs that change the course of the disease, particularly relapsing-remitting multiple sclerosis (RRMS).

Back when I was in training, we had no drugs that altered the prognosis of MS or prevented attacks. The only thing we had were steroids. We gave them to people during serious attacks to speed recovery. But we had nothing to lower someone’s chances of developing the disease. We also couldn’t stop future attacks, put off disability, or make it less serious.

Now there are more than 15 FDA-approved drugs that do just that. They include shots you can give yourself, pills, and intravenous infusions. But they differ in how effective they are and the side effects they have. And we don’t have a way to predict which patient will respond best to which drug.

The goal of MS specialists now is what we call “no disease activity.” This means no relapses, no new lesions, and no ongoing development of disability. For many patients, we can achieve that, especially those with RRMS.

There have also been changes in how we look at secondary progressive multiple sclerosis (SPMS). In the last several years, three drugs have been approved for both RRMS and SPMS. Before that, there were no drugs approved for SPMS, except one very potent chemotherapy that we don’t use anymore.

We now have evidence that early treatment, and particularly treatment with certain drugs, may delay the conversion of RRMS to SPMS. In some cases, patients don't have gradual decline over the course of decades.

What’s on the Horizon

Many new therapies are being studied to advance MS treatment even more. Two important areas of study are how to promote repair in MS and how to treat progressive MS.

Remyelination and Repair

In people with MS, myelin is destroyed, which causes a lot of symptoms. Researchers are looking at different strategies to help the body form new myelin, the protective coating around nerves.

Some clinical trials target molecules that normally suppress the growth of myelin. Researchers are now looking at a protective or pro-regenerative part of the immune system that we can manipulate to protect damaged neurons and stimulate new fiber growth.

My group at the Ohio State University just published a paper about our discovery of an immune cell that rescues damaged nerve cells from dying. It also stimulates nerve fiber regrowth. It may not only stop further damage of the central nervous system, but it may also reverse damage and restore function.

Treating Secondary Progressive MS

We’ve made progress with SPMS medication, but there’s more to be done.

Data suggests three drugs recently approved for SPMS are somewhat effective in a subset of younger people who still have new inflammatory lesions. But they’re unlikely to help those who are further along with the disease. So the quest is to find treatments for those people.

A few pills being tested in trials show promise. One of them suppresses the immune cells that are normally found in the brain and spinal cord. It stops the body from activating them. In a recent phase II trial, it slowed the progress of disability in people with inactive, progressive MS.

Finding the Right Treatment for Each Person

Right now, we can’t predict which patient will respond best to which drug. But there are a lot of ongoing studies that predict which drug will be the most effective in a given individual.

Researchers are also looking for biomarkers to develop blood tests that may tell us if someone’s more likely to respond to one drug versus another.

Vitamin D, Antioxidants, and Gut Microbiome

Some studies show that very low levels of vitamin D raise your chances of developing MS. Now there are studies to see if boosting vitamin D levels with extra supplements may tamp down new attacks or new lesions for people who already have it.

There are also studies that look at the gut microbiome and if you can manage MS better by changing the bacteria in your gut.

It’s not conclusive yet, but researchers are looking at whether certain antioxidants may alter treatment or management of MS. One is called lipoic acid. A few studies suggest it may slow the loss of brain tissue in people with MS. There will likely be future studies that look at lipoic acid and other antioxidants in greater detail.

New Ways to Manage Symptoms

One of the most common and hard-to-manage symptoms of MS is fatigue. There are studies on pills and cognitive rehabilitation therapy to treat it. There’s also a lot of research into improved prosthetics and robotics to help patients with MS to function better.

Early, Aggressive Treatment

Now that we have highly potent drugs to treat MS, there’s a debate about whether it’s better to start early treatment with aggressive drugs or to start with lower-potency drugs and then step up (escalate) to more potent ones.

A recent study suggests that people treated with higher-potency drugs from the start are less likely to transition to SPMS years down the line. New studies that compare aggressive early treatment to escalation therapy may help us know more.

The Outlook

Right now, many of my patients with MS are living full lives. I've seen people who've been relapse-free for 2 decades with no new lesions. No one would know that they had MS.

This is a completely different situation from when I was a resident in training. Then, most people we saw went on to need assistance devices and had to stop working.

A cure is very difficult to predict. We’re more likely to find treatments that help relapsing-remitting disease and maybe completely stop the progress of the disease. A cure may take a little longer.

 From: www.webmd.com

 

MS: Strangest Symptoms From Head to Toe

Extreme fatigue, clumsiness, weird prickly sensations, sluggish thinking, wonky vision -- these are classic and common first symptoms of multiple sclerosis, or MS. But the expected stops here. Damage to the central nervous system, aka your brain and spinal cord, is what causes these symptoms. That’s a wide range of functions that affect many different people. So it can show up in some strange and varied ways. Watch this slide show (1 / 15).

 

https://www.webmd.com/multiple-sclerosis/ss/slideshow-unusual-symptoms-ms?ecd=wnl_mls_040921&ctr=wnl-mls-040921_leadCTA&mb=q80%2F%40kIeuyYKtyaYzOxdbc6RVoMqf%400VkpmvpK5yEEQ%3D