Growing up in central Oklahoma, Saturday mornings were filled with the sound of the weekly test of the local tornado-warning siren. Testing is important for the safety of the residents to not only make sure that the warning sirens work, but so that people know what they should do in case of a tornado emergency.
When living with a chronic disease such as multiple sclerosis (MS) that can be highly unpredictable, it is important to develop your own MS early warning emergency alert system. The majority of people living with MS have relapsing MS, which is marked by periods of increased symptoms or disease activity. Some people may experience a significant improvement of symptoms between relapses, while others might experience a combination of some improvement with more continued disease progression. Read more about the different forms of MS here.
Each person’s early warning signs would be unique. Specific symptoms that I’ve experienced prior to a significant relapse include increased fatigue, spasticity, tingling and numbness, pain, brain fog, and depression. Basically, any MS symptom could be an early warning sign of an impending exacerbation.
What is an exacerbation?
Exacerbation, relapse, flare — these words each refer to the same thing — an episode of increased disease activity. The official definition of a relapse involves new or worsening symptoms that last for more than 24 hours and are separated by a previous relapse by at least 30 days. Treatment with corticosteroids can help to speed recovery from a relapse. Only recently have I heard some people with MS tell stories that their neurologists won’t prescribe steroids unless there is magnetic-resonance-imaging (MRI) proof of active disease demonstrated by gadolinium-enhancing lesions. My neurologist has never required an MRI scan to confirm or deny a relapse has occurred. Doing so wouldn’t be practical and may significantly delay treatment.
How long does a relapse last?
The length and severity of any relapse is variable. The increased, returning, or new symptoms must last for 24 hours, otherwise it’s not a relapse. Relapses can last for days, weeks, or even months. Even if symptoms improve, things may not go back to baseline and residual damage may remain. It’s important to know that if the increased symptoms are caused by heat or illness, the episode is called a pseudo-exacerbation. Symptoms generally improve once the underlying cause has resolved (e.g. body temperature returns to normal).
What to do if you suspect a relapse?
The first thing I try to remember when I begin to notice my MS symptoms act up is that I probably need to slow down, physically and mentally. The combination of a numb face and the sensation that a feather is constantly tickling my cheek is a warning sign to stop pushing myself so hard. Rest and extra sleep is sometimes all I need to begin to feel better in a matter of days.
The onset of a relapse hardly ever happens suddenly. Admittedly the morning that I woke up and couldn’t see due to optic neuritis, the change seemed sudden but it did progress further over the course of 24 hours. But most of my relapses have snuck up on me so gradually that I was days into a relapse before I thought to call my neurologist. If extra rest and hydration don’t help, I know it’s time to seek treatment.
Can stress reduction help?
Although increased stress levels have not been directly associated with the onset of MS, an association has been noted between higher stress levels and higher risk of relapse and/or active lesions in people with MS. Research suggests that reducing stress levels using a stress management therapy (SMT), such as cognitive behavioral therapy, can reduce the development of new active lesions, but no data is available to suggest that SMT reduces relapses or disease progression.
Strategies to stay resilient against MS
Eat a balanced healthy diet and stay hydrated.
Get adequate amounts of sleep and rest if fatigued.
Maintain a sense of humor and positive attitude.
Strive for cardiovascular health.
Keep physically, socially, and intellectually active.
Take prescribed medications as directed.
Take advantage of cognitive strategies and/or physical aids when needed.
Be aware of lifestyle habits that can negatively impact your physical or mental health (e.g., stop smoking).
Each of these strategies are helpful in building your physical and mental reserve to combat the ups and downs of MS. They are also helpful actions to take when your MS early warning alert system is broadcasting siren alarms. Don’t wait until the MS tornado is ripping off your roof to do something good for yourself.
Communicate with your doctor
Talk to your doctor about when you should report a suspected relapse. Don’t be like me and wait several days before calling the office. If you continue to experience relapses, it may be time to change or begin disease-modifying therapy. The current goal in MS treatment is “no evidence of disease activity” otherwise known as NEDA.
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Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.