Poet Azure Antoinette and others discuss living with multiple sclerosis (MS) in a new documentary developed with the National Multiple Sclerosis Society.
Your life
Between Relapses
MS fatigue feels like being stuck in a bubble with really
thick air around you that constantly pushes you 
Multiple sclerosis (MS) is an autoimmune disease in which your own immune cells attack your central nervous system (CNS). The CNS includes your brain, spinal cord, and optic nerves.
Normally, immune cells patrol for signs of infectious substances (such as viruses and bacteria). When they find one, they attack it. Generally, B cells make antibodies that help the immune system recognize the infectious substance, and T cells attack the infectious substance and help control the immune response.
The CNS communicates by sending signals through the nerve cells, also called neurons. These neurons help you process and respond to the world around you.
Neural networks are like well-maintained highways throughout the brain.
With MS, these highways become damaged and over time may become disconnected. This can cause signals to move more slowly and less efficiently within neural networks.
The brain can build new connections to try and repair damage. Its ability to build these new connections decreases over time, though.
As the brain tries to build so many new connections, it can become less efficient. Think of it like taking a detour or a dirt road — you may still get to your destination, but it usually takes longer.
Before being diagnosed with MS, a person can experience radiologically isolated syndrome (RIS) or clinically isolated syndrome (CIS).
RIS is used to classify people who had an MRI that showed an abnormality in their brain or spinal cord that looked similar to an MS lesion. These individuals have no past or current neurologic symptoms at the time the abnormality is found.
CIS is used to classify people who have a first episode of neurologic symptoms caused by inflammation in the CNS and damage to myelin. The signs and symptoms of CIS are similar to those of MS but don’t yet meet the full criteria for an MS diagnosis.
RRMS affects most people with MS (85%) and is characterized by recurring “relapses” followed by a period of recovery or remission. Relapses are episodes of new symptoms or worsening of old symptoms that may occur at the same time as MS lesions in the CNS.
Relapses can vary in intensity from mild to severe, and the symptoms they cause can vary from person to person. After a relapse, the symptoms it brought on can disappear completely, but sometimes they don’t. If symptoms continue after a relapse, it can lead to further disability.
About 80% of people diagnosed with RRMS will eventually progress to SPMS. In this type of MS, neurologic function can get worse over time with or without relapses.
PPMS is a type of MS in which neurologic function immediately starts to get worse from the beginning of experiencing symptoms. This type of MS affects approximately 15% of newly diagnosed individuals.
Fatigue: Tiredness or lack of energy that can affect your ability to function at home or work.
Numbness/tingling: A numb feeling in your face, body, or extremities (arms and legs).
Weakness: Unused muscles or nerve damage can make you feel weaker than usual.
Dizziness and vertigo: Dizziness can feel like you are off-balance or lightheaded. Vertigo can make it feel like your surroundings are spinning.
Sexual problems: The body’s sexual response can be affected by damage in MS.
Emotional changes: The effects of MS, or the stress of living with it, can lead to emotional changes like depression, mood swings, or irritability.
Difficulty walking/gait issues: Muscle tightness, numbness, weakness, and balance problems, among other things, may make it harder to walk straight and keep your balance.
Vision problems: Blurred vision or visual disturbances are often one of the first signs of MS a person experiences.
Bladder and/or bowel problems: Bladder dysfunction and symptoms like constipation often accompany MS but can usually be managed with diet, fluids, and exercise.
Difficulty thinking: How you learn and process new information or keep your focus can be affected by MS.
Of these common MS symptoms, fatigue is one of the most common.
About 81%
of people living with MS will experience fatigue in their first
year after
diagnosis. So if it’s happening to you, you’re not alone!
MS fatigue is unique to people living with MS and different than other types of fatigue. If you experience MS fatigue, it doesn’t mean you aren’t trying hard enough to push through it.
There are a number of factors that are thought to contribute to your experience of MS fatigue.
We already discussed how MS may cause your brain to function in different ways. Remember the highway example…your brain may build more connections to compensate for the ones that were damaged or lost.
It’s possible that connections are altered in the brains of people with MS fatigue, too. Though experts don’t agree on all the possible causes, studies have found that people with MS fatigue may have changes in connectivity in their brains when resting during an MRI scan compared with people without MS. Other studies have shown that the brains of people with MS may also be more activated when performing fatiguing tasks during an MRI scan compared with the brains of people without MS.
For example, if you aren’t sleeping well because of muscle spasms or bladder problems, you may feel fatigued as a result. Or maybe you feel fatigued from spending more energy to perform everyday tasks, which can be caused by a variety of MS symptoms.
Finally, things that can be a result of living with MS like not getting enough exercise, pain, depression, as well as certain medications can also contribute to MS fatigue.
About 81% of people with MS have some fatigue
within the first year of diagnosis.
Current MS medicines—called disease-modifying therapies (DMTs)—can help reduce relapses. However, patients taking these medicines can still be affected by MS fatigue.
There are medicines your doctor can prescribe specifically to treat MS fatigue symptoms. However, there isn’t enough evidence to show that they can actually manage MS fatigue.
Your doctor may recommend things like exercise or taking it easier at home and work to help you avoid feeling fatigue. Some people living with MS also try alternative methods, such as acupuncture.
You may feel MS fatigue from the start of the disease. In some patients, fatigue may worsen over time despite treatment with an MS medicine.
You can experience MS fatigue in a variety of ways, including:
Physical difficulties
Difficulties thinking
or concentrating
Difficulty
performing
Difficulty
working
Anxiety or
depression
Difficulty participating
in relationships and social life
Quotes were collected
from real MS patients.
MS fatigue has been called a “hidden” symptom of MS. Considering how
it may
affect you is the first step to helping you talk about it with your
family,
friends, and treatment team.
Take this short survey and have your answers emailed to you afterward so you’re ready to talk about MS fatigue at your next doctor visit.
Quotes were collected
from real MS
patients.
Help your treatment team, family, and friends understand and support you by clearly
describing how MS fatigue affects you and what you’re doing to try and manage
it.
MS fatigue affects many people living with MS. There are several different ways
you may be able to think and do something about it.
YOU CAN:
YOUR DOCTOR CAN:
Talk openly with your doctor about your short-term and long-term goals and the symptoms that are important to you.
Download a patient brochure,
print the MS
fatigue survey, and
check out some other helpful sites for people living with
MS.
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Myelin is a substance that forms a protective layer over neurons in the CNS. This helps neurons send signals rapidly.
In MS, for unknown reasons, immune cells attack myelin, damaging or destroying it and causing inflammation.
When myelin is damaged or destroyed, it becomes harder for neurons to communicate with each other quickly and effectively. The neurons themselves can also be damaged in MS.
Areas where inflammation has damaged or destroyed myelin are called lesions. Your doctor can often see these lesions using magnetic resonance imaging (MRI).
The following survey is for you to examine your own experience with MS fatigue so that you can better discuss it with your doctor. This survey is not intended to be a diagnostic tool. The questions included here are just a few examples of how fatigue may affect a person living with MS.
The information entered into the survey will not be collected by Janssen Pharmaceuticals, Inc. If, at the completion of the survey, you choose to have your answers emailed to you, the answers will display within a new email in your own email client (e.g., Outlook, Gmail, etc.). You can then choose to send the email to any email address. Please note that email is not a secure method of communication and is not encrypted, and that the information included within this email could be at risk of being intercepted while in transit, as with any information communicated through email that is not protected through encryption.
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