An MS relapse happens when you experience worsening or new symptoms that last at least 24 hours and meet other criteria. Relapsing forms of MS, such as relapsing-remitting MS (RRMS), clinically isolated syndrome, and active secondary progressive MS (SPMS), have pronounced flare-up episodes, whereas primary progressive MS doesn’t.
Because symptoms can vary, MS relapses — also known as exacerbations — aren’t the same for everyone. Relapses can involve one or multiple symptoms simultaneously. Relapses may last for longer or shorter time periods, too. Some members of MyMSTeam have shared that they aren’t sure when a relapse occurs. As one member put it, “Is what I’m feeling a relapse, or is it just Tuesday?”
“My relapses sort of creep up on me slowly, making it difficult to decide if it’s a relapse or not,” wrote one member. Another said, “It appears that when your memory and cognition are affected by a relapse, you don’t realize you are having one until it’s over.”
Because MS can affect any part of the central nervous system (which includes the brain, spinal cord, and optic nerve), almost any function can be affected. Spasticity, muscle weakness, trouble thinking, fatigue, pain, and strange sensations are just a few of the most common symptoms. One of these symptoms may temporarily worsen, but it may be considered a pseudoexacerbation caused by fever or a urinary tract infection rather than a true flare.
It can be hard to be sure you’re having a relapse without talking to your doctor. “Relapses are weird, confusing, and peppered with INSANITY,” as one MyMSTeam member wrote. Here are some ways other members have described the symptoms and sensations they’ve experienced during MS relapses.
Sensory changes, like numbness and the sensation of pins and needles, may become more severe during a relapse.
A member of MyMSTeam asked, “Just curious. … My first MS relapse was numbness on the right side of my body. I haven’t had a relapse since then. What has everyone else’s relapses been like?”
Another responded, “I just had my second relapse. My legs are so stiff with pins and needles, and my walking is worse. The spasms are so bad.”
Symptoms can be very severe. “Just got home after spending a week in the hospital with a flare-up,” wrote one member. “Scary. Lost the use of my legs.”
For some people with MS, the symptoms eventually go back to feeling the way they did before the relapse, but for others, problems persist.
Eye issues, such as optic neuritis, can worsen during a relapse. “I’m experiencing a pretty rough relapse with eye problems (optic neuritis) that the eye doctor affirmed. It’s a new and nasty pain that includes cramping and weakness. Also, my immune system is going haywire,” explained one MyMSTeam member.
Another said, “It hasn’t been a good week so far. I had a relapse with left eye inflammation, and I have blurred vision.”
During optic neuritis, inflammation affects the optic nerve and can cause pain and loss of vision. Optic neuritis is usually unilateral, which means that it affects only one eye at a time. Eye pain, changes in color vision, and the ability to distinguish contrast can also signal optic neuritis.
One member shared that they found relief with treatment. “I had a month of double vision. MRI changes led my MS neurologist to start IV corticosteroids. It cleared up after a week.”
Unfortunately, many people have trouble sleeping during a relapse, often because symptoms of multiple sclerosis keep them up at night.
One MyMSTeam member described a relapse she experienced: “I was feeling a constant buzzing sensation down one side of my body. I couldn’t sleep and was in a lot of pain, even though I was numb.”
Another member asked, “I had total insomnia for the second night in a row, plus a migraine 😪😴🤕🤧. Does anyone else get insomnia directly from MS or relapses?”
Lack of sleep is a common symptom of MS in general, and not getting enough sleep can make other symptoms worse as part of a self-perpetuating cycle. Other potential causes of sleep problems can include vitamin D deficiency or side effects of MS medications.
Following a bedtime ritual and consistent sleep schedule may help, as could limiting alcohol and caffeine. Let your doctor know if you’re struggling with sleep issues.
A flare-up can also bring about coordination problems, imbalance, and even dangerous falls. One member of MyMSTeam wrote, “I woke up with vertigo worse than ever, for no apparent reason. I couldn’t walk very well from the dizziness. I had to stay in bed. I couldn’t read or watch TV, and even moving my head gave me nausea. Maybe the start of a severe relapse??”
Another member explained the range of symptoms he experienced during a relapse:
“I’ve been having tough relapses that have challenged me in several ways. My vestibular system has been affected, making vertigo worse. I lost feeling on my right side. A recent episode involved fainting due to my autonomic nervous system failing and my blood pressure dropping.”
It’s normal to feel nervous or uncertain during an MS attack because symptoms can be unpredictable and difficult to manage.
New or worsening symptoms can be a sign that your disease-modifying therapy isn’t working or needs to be modified, so it’s vital to communicate with your neurologist. Keeping a detailed log of your multiple sclerosis symptoms, including when they started and how they feel, can give your doctor more information to evaluate your MS treatment and assist with managing relapses. If you’re having more relapses, it may be time to discuss your treatment options.
Reaching out to your support system, whether through online support groups, talking to family and friends, or connecting with your health care professional, can help you navigate the ups and downs of life with MS.
MyMSTeam is the social network for people with multiple sclerosis and their loved ones. On MyMSTeam, more than 195,000 members come together to ask questions, give advice, and share their stories with others who understand life with multiple sclerosis.
Have you experienced a relapse since you were diagnosed with MS? How did it feel for you, and do you have advice for others going through an MS flare-up? Share your thoughts in the comments below, or start a conversation by posting on MyMSTeam.