How to Best Cope With the Invisible Symptoms of MS

Looking wonderful doesn't mean you feel wonderful

woman looking tired sitting on sofa
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Symptoms of multiple sclerosis can vary by type and severity and do not necessarily correlate with how a person looks on the outside.

In other words, the physical appearance of a person may look healthy, but what is happening inside the brain and spinal cord of a person with MS is often destructive but not outwardly visible to others.

Let's take a closer look at some of these debilitating, "invisible" symptoms in multiple sclerosis, and how you can best cope with them, especially when others question their trueness.

Fatigue in Multiple Sclerosis

Understanding

Fatigue is one of the most disabling symptoms in MS and has been described in different ways—from feeling like you have the flu to experiencing extreme muscle weakness and heaviness. In addition to the physically draining nature of MS fatigue, others often describe a "brain fog," which may lead to difficulties thinking and processing information, as well as a depressed state of mind.

While fatigue may stem from the disease itself (think of how your nerve signals have to use up more energy to cleverly bypass damaged and destroyed circuits within your brain and spinal cord), fatigue in MS may also be caused by other MS-related manifestations, like depression, medications, and sleep disorders, to name a few.

This is why managing your fatigue is often a complex process, one that requires a thoughtful, unique approach for each person.

Coping

After sorting out the "why" behind your fatigue, your doctor will first treat those secondary causes. For instance, treating your depression with an antidepressant and talk therapy may ease your fatigue a bit.

Likewise, a good, hard look at your medication list may reveal a fatigue culprit, like that muscle relaxant you may be taking for your MS-related spasticity. While you very well may need a medication for your spasticity, your doctor may recommend switching to a different medication, cutting back on the dose, or taking it at a different time of day in order to soothe your fatigue.

After seeing your doctor, if your fatigue is deemed to be primarily related to having MS (the disease process itself), your doctor may recommend behavioral strategies like:

  • Engaging in daily exercise or yoga
  • Implementing healthy sleep hygiene habits
  • Seeing an occupational therapist in order to develop energy conservation strategies
  • Managing your stress better (consider seeing a cognitive-behavioral therapist for this strategy)
  • Taking an afternoon nap or performing morning meditation

Moreover, your doctor may also recommend medication to help you get through your day. Some medications used to relieve MS-related fatigue, include:

  • Symmetrel (amantadine)
  • Provigil (modafinil)
  • Ritalin (methylphenidate)

In the end, fatigue can be an incredibly frustrating symptom to deal with, especially since others cannot visibly see your suffering. The "invisibleness" of MS fatigue may make others question or ignore it, which can be extremely isolating and upsetting.

Talk with your doctor or consider seeing a therapist who can help you navigate these delicate situations. Perhaps, during bouts of fatigue, you avoid those people who are not supportive and understanding of how you are feeling.

Keep in mind that you are not alone—your neurologist and others within the MS community strongly understand your fatigue, and this hopefully can provide some comfort.

Cognitive Problems in Multiple Sclerosis

Understanding

At least half of people with MS experience problems with cognition, like difficulties processing new information, solving problems, remembering names and appointment times, and concentrating on conversations or activities like reading or watching a movie.

Unlike walking or speaking problems, or other "visible" symptoms, cognitive dysfunction in MS is often quite subtle. In fact, a person's cognitive difficulties are often not noticed by others, but this does not mean they are not bothersome or debilitating to the person affected. Some people stop interacting with others or even leave their jobs because of cognitive dysfunction, and this can trigger depression and anxiety.

Even more, others (even loved ones) may become upset or offended by a person's cognitive problems, if, for example, a social visit or deadline is missed because of a memory difficulty. It can be extremely frustrating and exhausting trying to explain to others that you are not being rude or dismissive; rather, you simply forgot due to your MS-related memory problems.

Coping

The good news is that cognitive problems in MS are rarely severe, such as what you may see in people with forms of dementia, like Alzheimer's disease. Still, they can be disabling enough to lead to unemployment or social isolation.

Often times, people naturally and healthily adopt compensatory techniques to overcome their cognitive problems, which means using a substitute skill to overcome the impaired function.

An example of a simple compensatory technique is using a digital voice recorder to dictate appointment times, names, or other friendly reminders. Other people use a large, "master" calendar in their home where they record every detail from doctor visits to pharmacy phone numbers.

If you find that your cognitive problems are affecting your quality of life or daily functioning, be sure to talk with your neurologist about it. You may benefit from cognitive rehabilitation, which will not only help you devise compensatory techniques, but also engage you in learning and memory exercises.

It's also important to note that your cognitive problems may not stem directly from MS, but from the implications of having MS, like poor sleep, depression, or severe fatigue. Sorting this all out can be tricky, and a conundrum in and of itself, which is why a professional cognitive evaluation may be useful.

In fact, some people discover that depression is the root cause of their mental slowing, and by treating their depression (with an antidepressant and/or talk therapy), their cognitive difficulties reverse. Likewise, treating your severe fatigue with a stimulant like Ritalin (methylphenidate) may also improve your cognition, especially your attention and concentration.

Pain in Multiple Sclerosis

Understanding

It's hard to believe that MS used to be considered a painless disease; in fact, if a person described pain, doctors used to move MS down their list of potential diagnoses. Now we know that MS does cause pain—and the vast majority of people with MS (around 80 percent) experience pain at some point in their disease course.

Pain in MS often stems from the disease itself because with MS, your immune system attacks the myelin sheath (a protective covering around nerve fibers), and this process (called demyelination) causes nerve signals to get misdirected to nearby pain receptors. What this means is that pain signals get sent to the brain when they shouldn't be.

Pain that results from nerve-related damage is called neuropathic pain. Specific examples of neuropathic pain in MS include:

In addition to neuropathic pain, there is musculoskeletal pain in MS. In fact, muscle spasms and stiffness, joint pains, and back pain are common in MS and result from spasticity and problems with walking and balance.

A third type of pain (called paroxysmal pain) has a sudden onset and usually lasts for a very short time, but can be severe. A classic example of paroxysmal pain in MS is Lhermitte's sign, which causes an electric shock-like feeling to go down your spine when you touch your chin to your chest.

Coping

Since your pain may stem from MS itself, or from the consequences of having MS (for example, back pain from using a mobility-assistive device), treating it often entails a multifaceted approach.

For instance, you may take a medication like Neurontin (gabapentin) when your neuropathic pain flares. But for pain related to spasticity, you may have a more complicated treatment regimen that includes heat, massage, physical therapy, and taking a muscle relaxant. Avoiding triggers of your pain, like heat, strenuous exercise, tight clothing, or a full bladder can also be helpful.

This all said, like other symptoms of MS, pain may arise when you least expect it. This means you may not be able to go to your child's basketball game or partner's birthday celebration, as planned. The strain of your pain along with the guilt over having to "let others down," can be overwhelming.

You may isolate yourself, as a result, and decline invitations in the future, so you never have to cancel. Likewise, you may push yourself to go to the basketball game or party—this is actually not always a bad idea, depending on the severity of your pain. Nevertheless, forcing yourself to do something when you are not feeling well can lead to unnecessary discomfort and even resentfulness.

When navigating these challenging and unique situations, it's best to seek out guidance from a mental health professional, like a therapist who has experience working with people with a chronic illness. Support groups, whether that's within your community or online, may also provide advice on similar scenarios.

Lastly, an open, candid dialogue with your loved ones can be immensely helpful and therapeutic. Most people simply do not understand your pain (and you cannot blame them), but they will likely feel honored that you are sharing your vulnerabilities—and this can be a starting point for a beautiful, empathetic relationship.

A Word From Verywell

Besides fatigue, cognitive dysfunction, and pain, there are many other invisible symptoms of MS, like bladder and bowel problems, balance problems, blurry vision, and weakness.

Regardless, the key to coping with your invisible symptoms is to communicate them to your doctor and your loved ones. Healing and understanding cannot begin until the facts are out on the table.

Perhaps, verbalizing your symptoms will help you build resiliency, or at the very least, help you be a bit kinder to yourself. Your symptoms may be invisible, but they are also very real.

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