Relapse Management

By Stacie Prada

Managing MS relapses can mean different things to different people, and success varies immensely depending on how long you’ve had multiple sclerosis, the symptoms you experience, your level of physical ability, your disease course, and your expectations. When I think of managing relapses, I think of treating, avoiding and learning from them in order to slow disease progression and reduce the justifiable fear that comes each time one occurs.

  • We can treat relapses to try to shorten the duration.
  • We can try to avoid relapses with lifestyle and medication. This is an idealistic goal and may be possible, but it places a lot of blame or praise on the person with MS. It’s a pass-fail test that doesn’t necessarily correlate with how well a person manages their health.
  • We can learn from relapses each time we have one to better understand how our body works.
  • We can work to manage the fear that comes with relapses and disease progression. This part holds a lot of mystery and is sometimes the most difficult part.

When I was first diagnosed, I had no idea at any given moment if I was having a relapse or not. My scans made it clear I’d likely had MS for over a decade before diagnosis, and I’d had no idea I even had a health issue.  My symptoms were just my life, and I had no comparison.  It was scary and felt unpredictable.  I didn’t know if there was anything I could to do reduce them, if I was doing things that made it worse, or if at any moment I was in the midst of a relapse.

Managing relapses at that time meant figuring out when I was having one and trying to stop it once it started.  It took learning about MS symptoms and paying attention to how I felt.  I compared how I felt to my MRI scans and neurologist’s assessment in order to know whether or not I was having an MS exacerbation.  Steroid treatment was done to try to stop relapses. Because my biggest symptom was fatigue and I had no way to objectively measure it, I lived in a fairly constant state of fear and self-doubt.  What got me through was a belief that I would get through this phase and learn what I needed to know to live with MS. I didn’t know how, but I trusted it would happen eventually.

At six years past diagnosis, I experienced an MS milestone. I achieved a point of confidence where I felt like I could finally tell if I was having an exacerbation or not.  I knew how terrible I felt when I was having a relapse, and I knew how well I could feel when I wasn’t.  I’d learned my body enough to know which symptoms were normal for me.  I could distinguish between when the intensity and duration was likely due to existing damage from previous relapses and when it was likely new active MS activity.

I attribute this MS milestone to constant monitoring and self-assessment.  After a relapse, I would consider what helped and what was hard about it.   I’d speculate on what would have made it easier and how I can prepare for the next relapse. I’d think about how it felt, and I’d try to match up that feeling to my test results.  When I felt poorly but wasn’t having a relapse, I’d use that information to learn what is normal for me.  Knowing that helped me increase confidence and lessen my fears.

There’s so much to learn about MS, relapses and how your unique body behaves that has no prepared reference manual or shortcut around education and effort.  It’s a moving target since our bodies are aging and old damage can cause new symptoms. There is no one proven or best way to manage health to avoid relapses.  Monitoring your health, learning all you can, and trying things to see what works helps build self-confidence.  Understanding how MS affects a body in general and yours specifically helps reduce the fear of the unknown. Reducing fear can make every aspect of living with MS more bearable.

People with MS do not have complete control over whether or not they have a relapse.  If someday there is a determined cause, cure and 100% effective management regimen, then that might be possible.  Until then, the only ways I think relapses can be managed are to tackle them when they happen, to reflect on them after they happen to try to find any patterns or contributors that you might be able to control, incorporate what helps, avoid what doesn’t, and to try to make the fear manageable when they do happen.

*Stacie Prada was diagnosed with RRMS in 2008 at the age of 38.  Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/ 

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The “Common” Cold

It’s that time of year again. Everywhere you turn, it seems like someone is sniffing, sneezing, or coughing. For most people, cold season is a nuisance, but for people with MS, cold season can be debilitating, and even lead to health complications.

Cold viruses often impact people with MS differently than the rest of the population, making cold prevention and recovery very important. This month, many in our MS community shared their experiences with the common cold and we thought you might relate as well. Do any of these sound familiar to you?

Symptoms & Recovery Time

“The past two winters, I have caught my daughter’s cold and I get hit HARD to the point I have to go to emergency and get booked into the hospital.”

“Like having life sucked out of you”

“Whenever the rest of my family gets a cold or virus, it passes within a week. When I catch it (and I almost always catch it) it lasts for weeks, PLUS I get pseudoexacerbations on top of it. No fun.”

It takes me 3 times as long to get over a cold than it does anyone else. So frustrating!”

“When I get a cold now, it lasts 2-3 weeks”

According to our MS community, the “common cold” is anything but common. While most people recover from a cold in seven to ten days1, for MS patients, it can take much longer. According to many of our community members, cold symptoms are also more intense for people with MS, often making underlying MS symptoms more noticeable.

In addition to typical cold symptoms (such as fever, cough, congestion, body aches, and headaches1), cold viruses can also lead to MS pseudoexacerbations, which usually last less than 24 hours and may mirror the symptoms of a full-blown MS relapse. Because a fever can trigger a pseudoexacerbation2, you may want to ask your healthcare provider if over-the-counter fever reducers (such as acetaminophen or ibuprofen) are safe for you.

When You’re Surrounded by Sick People…

“Every time my parents get sick then I will catch it…I just wish they would learn about MS.”

“Unfortunately for us, even the hospital and doctor office can be risky.”

“People just don’t understand, no matter how much you explain it to them.”

I try to stay away from sick people.”

“Do NOT expose yourself to sick people. If they don’t get it, tough. Please protect yourself.”

MS is understood to be an autoimmune disorder.3 In terms of immune health, many community members have shared that MS has made them more susceptible to colds, as well as other illness. According to many of you, being around sick people almost guarantees that you catch whatever’s going around, making doctor’s offices, public transit, and even the workplace risky during cold and flu season.

For many community members, it can be difficult to avoid the cold germs, especially without accusations that you’re being “rude” or “overdramatic” when asking sick people to keep their distance. However, if you’re managing MS, your health is the priority. To stay healthy during cold season, many community members recommend avoiding sick friends, family, and strangers all together, and talking to people about how MS affects your immune system.

Cold Complications

“Sinus and ear infection, felt like I had the flu. Going on day 8. Ugh.”

“I have a cold and 2 infections right now. It can’t ever just be one thing.”

“Ear infections”

In addition to experiencing more intense cold symptoms, a longer recovery time, and increased susceptibility to the cold virus, individuals with MS are also more susceptible to infections.4 Common colds can spread to the ears, chest, and sinuses,5 leading many MS patients to experience other complications as a result of a cold, such as ear infections and sinus infections. Because MS can make it harder to fight infections, be sure to talk to your doctor if you think you’ve developed an infection, or if you experience a pseudoexacerbation lasting more than 24 hours.

Staying Healthy… or Recovering

“NO double dipping, sharing drinks, utensils, and most definitely, the cook must NOT lick the spoon the put it back…Even if your family and friends are not showing symptoms, they could have picked up something.”

“Wash your hands all day, all night, and eat tons of veggies. I drink a blender full, and it really helps. Take good care.”

“Wash your hands, don’t kiss anyone (except your honey), tons of veggies, exercise as tolerated, and get LOTS of sleep.”

As we move into cold and flu season, many of our community members have suggestions for staying healthy and cold-free, such as good handwashing, maintaining a healthy diet, and getting enough sleep. If you do develop cold symptoms, consider these tips for fighting a cold. To prevent the flu, you should also talk to your healthcare provider about getting a flu shot, especially if you are exposed to family members and co-workers who may carry the flu virus.

Works Cited

  1. Mayo Clinic. “Common Cold.” Mayo Clinic, www.mayoclinic.org/diseases-conditions/common-cold/ symptoms-causes/syc-20351605. Accessed 27 Nov. 2017.
  2. Editorial Team. “Is It an MS Relapse or a Pseudoexacerbation?” MultipleSclerosis.net, Health Union, 6 Mar. 2017, multiplesclerosis.net/living-with-ms/relapse-or-pseudoexacerbation/. Accessed 27 Nov. 2017.
  3. Health Union. “What Is MS?” MultipleSclerosis.Net, Health Union, multiplesclerosis.net/what-is-ms/. Accessed 27 Nov. 2017.
  4. Montgomery, S., et al. “Hospital Admission Due to Infections in Multiple Sclerosis Patients.” European Journal of Neurology, vol. 20, no. 8, Aug. 2013, pp. 1153-60, dos:10.1111/ene.12130. Accessed 27 Nov. 2017.
  5. NHS. “Common Cold: Complications.” National Health Service, NHS, www.nhs.uk/conditions/common-cold/complications/. Accessed 27 Nov. 2017.
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MSAA’s Newest Publication – MS Relapse Toolkit

We are pleased to announce our latest booklet, the MS Relapse Toolkit.  This useful, spiral-bound resource provides information on why relapses occur and what you can do in advance to prepare for these unexpected and often significant flare-ups in disease activity.

The MS Relapse Toolkit includes:

  • In-depth details on relapses and symptoms
  • Checklists to share with your doctor and your family
  • Items to discuss with your healthcare team
  • How to plan ahead for a possible relapse
  • A listing of FDA-approved and experimental treatment options
  • Crossword puzzle with relapse-related terminology

Check out this newest resource and view or order you copy today!

 

Funding for the MS Relapse Toolkit was made possible by Mallinckrodt.

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