"But you don't look sick": Living with an invisible disease
Multiple sclerosis (MS) is a central nervous system disease. It is often called a "silent" or "invisible" illness. Symptoms include fatigue, sensory issues and depression. But these effects are not always easy to see. The impacts of MS affect each person differently, so symptom management also varies. Some may have pain or vision impairments. Others will experience cognitive changes. These include memory, concentration or decision-making.
Coping with MS can feel like an uphill battle. The most common symptoms can feel causal, or intertwined, with one another.
Because of this, it can be hard to separate one symptom from another. For example, depression and fatigue can feel similar.
There are many management strategies to ease these effects. Understanding common symptoms can help people with MS as well as the people who support them.
Feelings of tiredness or weakness are also referred to as fatigue. Fatigue is one of the most regularly reported symptoms of MS. It also happens to be one of the most depleting. Up to 80% of people with multiple sclerosis report feeling MS fatigue. Yet what causes this tiredness isn't always easy to pinpoint.
Even so, several practices can lessen fatigue. Good sleep hygiene means going to bed and waking up at the same time. This can help balance your biological clock. Also, try putting away mobile devices before bed. Instead, do something like listen to calm music. This helps signal the brain to quiet down and rest.
Some MS medications help with fatigue. These include narcolepsy drugs and over-the-counter aspirin.
Fatigue can be unpredictable and certain days may feel less draining than others. Planning common tasks in advance is another strategy to ease this issue. This may look like household chores, getting dressed or cooking dinner.
For instance, store cleaning supplies in a caddy with wheels. This makes for easy access and the ability to move items around. (Moving items to and from different locations in the home can be taxing).
Along these same lines, consider planning and doubling recipes. Meals can be refrigerated or frozen and then reheated. This can preserve time later in the week. In general, planning should account for the energy you have that day. Steer clear of overextending yourself. Instead, allot time for the things that matter most to you and your loved ones.
Coping with MS can feel frustrating when friends and family don't understand. Often, there is a mental burden that comes along with having this disease. This includes having limited energy for certain tasks throughout the day.
Spoon Theory describes decisions and trade-offs in this context. Not everyone understands chronic illness. So, this concept can help explain your energy limits to others.
Other problems with MS include neuropathic pain and numbness. Neuropathic pain includes sensations like stabbing, burning or sharpness. These sensory challenges that result from MS are due to damaged nerve pathways.
Victoria Reese, an MS patient, describes her multiple sclerosis story:
“…I started to notice numbness and tingling in my legs, mostly when I was at work. I noticed it but just kind of thought, oh, maybe I can’t wear heels anymore.”
Numbness, sometimes described as a feeling of "pins and needles", is often one of the first symptoms of the disease. About 70% of individuals with MS experience numbness. Sometimes, this sensation can be linked to a flare-up or relapse. Numbness may also increase with primary-progressive multiple sclerosis (PPMS). This is a steadily worsening form of MS.
Tingling or numbness may cause difficulty with balance. Issues with coordination or movement are possible, too. Victoria mentions wondering, “What if it happens when I am driving?”
People with numbness are at a higher risk of injury. An example of this could include biting the inside of your cheek while eating. You could also unknowingly suffer a burn while cooking. It's possible to fall, as well, because of a lack of feeling in the leg or foot.
Neuropathic pain can be sudden or chronic. It can feel like spasms, electric shocks or pressure. There is not a single cause of these sensations, but stress or fatigue can make the pain worse.
While there is no one way to get rid of numbness, the sensation is often brief. In severe situations, steroids or anti-seizure drugs may help.
Neuropathic pain does not usually respond to anti-inflammatory medications or opioids. Your provider may prescribe anti-seizure or anti-depressant drugs instead. Acupuncture and meditation are other options. Some people with MS state these strategies help address their nerve pain.
People coping with MS can attest to the burden of its symptoms. So can the people who love or care for someone with the illness. There are many challenges with this "invisible" disease.
As evidence of this, research has found high rates of depression in people living with MS. But the cause of depression in MS may not be just the emotional burdens of the disease. Your immune system, which enables your body to protect itself from disease, may play a part. Studies have also shown that direct damage to the brain can, too. Increased inflammatory activation of the immune system can cause this.
But these individuals aren't just coping with MS symptoms. They're also managing complex emotions and major life changes.
For example, a new MS diagnosis can prompt big adjustments. You may be grieving a change in your ability to work. Others struggle with accepting lower energy levels. It's also difficult to spend less time with your loved ones or miss out on activities you enjoy. Even loss of appetite can mean a person with MS may struggle to indulge in their favorite foods.
Overlapping symptoms can make depression and MS difficult. Clinical depression is a serious mental health problem. For people with MS, it results from a few things. First, chemical changes in the brain can occur. The illness can also cause central nervous system (brain and spinal cord) damage. These are known as lesions. Even side effects of other medications can play a part. Diagnosis requires speaking with a health care provider.
Fortunately, antidepressants and other coping strategies can treat it.
There are tools for coping with MS-related depression. For one, physical movement is critical. (Even though mobility problems can make it hard to work out.) Exercise helps with overall wellness and reduces stress. Safe, daily activity can have a positive impact on your health.
And while habits like journaling or meditation may seem tiring if you have fatigue, mindfulness can improve focus and mental well-being. For example, breathing exercises help ease feelings of irritability.
MS is unpredictable and can be isolating. This, combined with lower activity levels, can worsen depression. (Just like sleep issues can worsen fatigue.) This can lead to anxiety and lack of sleep, starting the cycle over again.
But this mental health problem is one of the most treatable aspects of MS.
Talking to health care professionals can help. They can suggest therapy or counseling services for you. Or they may prescribe antidepressants. Your provider can even review your current treatment regimens. (Certain medications can bring on or make depression worse. These include high-dose anti-inflammatories, also called corticosteroids.)
Supporting individuals who are coping with MS
The signs and symptoms of MS aren’t always easy to see. Fortunately, at Optum, we understand the effects of this disease. In fact, we have a Center of Excellence for MS. This means we offer dedicated support for patients, including:
- Designated, certified clinicians — Connect with a clinician who’s an expert in MS for help with your medications.
- Dedicated MS support team — A dedicated support team will help you from start to finish. We’ll reach out to you during different steps in your journey to help you stay on track.
- Financial assistance — Each time you fill your prescription, we check to see what financial help may be available to you. These could be copay cards, grants and foundation support and manufacturer program discounts.
- Appeals team — Our appeals team nurses write customized letters of appeal, regardless of formulary restrictions, to help patients get on the medications that work best for them, faster.
- Optum® Connections virtual visits — Get face-to-face with your care team in a real-time video chat.
- Optum® Connections video series — Feel more connected to others with the same condition. Also, learn more about your treatment from other patients with MS.
Your support system is important. And while MS is unpredictable, the Optum team of clinicians, pharmacists and support staff is always there. Call our dedicated provider phone line at 1-855-215-0235 or our dedicated patient line at 1-844-265-1760.
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