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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.
Posted in Multiple Sclerosis Association of America Guest Bloggers	| Tagged MS Awareness Month 2018, MS exacerbations, MS relapse, self-assessment, Stacie Prada	| Leave a reply
Monitoring MS Symptoms and Trying To Avoid Relapses
By: Stacie Prada
Most of my energy is focused on managing my health with the goal of avoiding relapses and disease progression. Since fatigue tends to be my earliest symptom when I’m headed for a relapse, I monitor my fatigue level and adapt my activities and schedule to treat fatigue seriously.
By the time I was diagnosed with MS, fatigue had become a constant presence in my health. I felt I had no choice but to push through it and only stop when I physically could no longer do any more. Just because I could push through it at times, it came at the price of relapses. In the span of a little more than a year after learning I had MS, I had three exacerbations.
Fortunately my MS is relapse remitting, and my body has responded well to disease modifying medication and lifestyle changes. It’s now been four years since I’ve felt like I had an exacerbation, and my MRI scans support the conclusion that I haven’t had a relapse in that time. Please know that I know I’m lucky this is working for me, and someone else may do everything they can and still have relapses. What I’m doing now may not work forever, but I’ll keep doing it as long as it works for me.
Specifically I listen to my body and take it seriously when my energy level dips. I track my fatigue level and adapt my activities based on that level. When fatigue overwhelms me or I’m having an exacerbation, I prioritize self care above all else. The hard part about self care is that what I think I may need in the moment might not be helpful for me in the long run. A good example is sleeping during the day. Sleeping more than an hour or so during the day usually upsets my sleep hygiene and keeps me up during the night. Once that starts, it can take a week or so to get back on track and sleeping through the night again.
If I’ve hit the point where I realize I need to stay home from work or other activities, I’ll clear my calendar. I’ll prioritize obligations and only do the top of the list based on mandatory items and those that will support me the most. The threshold for a mandatory item is really high at this point, and they’re things that absolutely can’t wait to be done differently.
Following these guidelines helps me make good use of my time for physical health recovery and mental health maintenance:
1. Look into yourself. What do you need most right now? The answer will be different from moment to moment. Check in frequently.
2. Rally the troops on standby. Let people know who care that you’re managing your health and this is a normal part of your life. Promise to let them know if there becomes cause for worry or a need for assistance.
3. Reduce input. Focus on one thing at a time. Limit technology as it can make your eyes tired and tax your brain.
4. Wear comfortable clothes, but still get dressed and groomed if possible. You’re not sick; you’re maintaining your health!
5. Move your body. Stretch, move each part of your body if possible. A slow yoga sun salutation can stretch most muscles in the body, raise your heart rate and lift your spirit. It takes energy, but the physical and emotional reward is tremendous. If you don’t feel up to much movement, just move from the bed to the sofa or a chair. Any movement helps!
6. Don’t move your body. Lay down. Close your eyes. Meditate. Make yourself so comfortable that there is nothing else you’d rather be doing in this moment.
7. Nap only if necessary. Maintaining a regular sleep cycle is important, and napping can disrupt nighttime sleep for days to come.
8. Open the drapes or blinds. Let in the daylight. Rest somewhere other than bed if possible.
9. Stick to regular routines for meals and snacking if possible.
10. Do something productive. Journal, learn something new, research a topic, declutter, organize, write a thank you note, or make a healthy dish. Limit it to the level of your energy, and don’t push too hard. Intersperse these activities with doing absolutely nothing.
11. Be responsible and responsive. Know your work and social commitments so you may cancel or postpone them proactively. Or go in to work for an hour or so and do the absolute minimum that can’t be postponed or canceled. Leaving colleagues and friends scrambling to cover for your commitments will understandably cause frustration and resentment on their part, guilt on yours, and more tension in your life.
12. Seize opportunities to pause. An unscheduled hour or two during your work day may be ideal for taking some personal time off from work. This may help reduce the instances of needing to take a full day off from work and the impact to your colleagues.
13. Congratulate yourself for having the strength and good sense to listen to your body’s signals and adapt your schedule to accommodate them!
I wrote about my Pause Approach during a particularly difficult week years ago, and I still refer to the guidelines I created for myself when I’m feeling vulnerable to an MS relapse. It reduces time and energy spent trying to decide what I should do, and it helps me give myself permission to take care of myself. That’s the best I can do for myself as a person living with MS.
Posted in Multiple Sclerosis Association of America	| Tagged ms, MS exacerbations, multiple sclerosis relapses, Stacie Prada	| 1 Reply
Tips for Avoiding a Post-Holiday Multiple Sclerosis Flare
The holiday season is behind us. Packed away in the garage are all the ornamental memories of the season. Driving around the neighborhood at night no longer is decorated by blinking bright lights. And while the majority of people are resuming their day-to-day routine, those of us living with Multiple Sclerosis are unknowingly entering the danger zone.
While the holidays are a magical time of year, they also impose emotional and financial stresses upon us. Many of us are looking at our December statements wondering how we spent so much or how we are going to pay off the bills. We are probably also feeling the after effects of all those great holiday dinners and desserts.
As the stress of paying the bills or trying to lose weight begins to build, we are at a greater risk for triggering a Multiple Sclerosis Exacerbation. According to the National MS Society, “an exacerbation of MS (also known as a relapse, attack, or flare-up) causes new symptoms or the worsening of old symptoms.” A 2003 research study concluded that, “stressful events were associated with increased exacerbations in relapsing-remitting multiple sclerosis.” Furthermore, according to Healthline.com, “researchers considered the four weeks following a stressful event to be a high-risk time for exacerbations.”
Considering that the holidays are a stressful event, for those of us living with MS, this stress can lead to an exacerbation. Here are some tips to help minimize the stress from the holidays:
Tips for Minimizing Post-Holiday Stress
Develop a financial plan – as the bills mount from the holidays, create a financial plan to help successfully budget your expenses. You may not be able to pay off the bills right away, but having a plan to pay off debt can help reduce stress associated with financial obligations.
Change eating habits – the holidays include a lot of emotional eating. Not only do we eat larger portion sizes during the holiday, but we also eat more desserts. Use the time after the holiday to get back on track in terms of eating healthy.
Exercise – the stress of holidays and the shorter days of winter make it easy to skip exercising. Exercising reduces stress and can help with symptom management.
Get back on schedule – the holidays force you out of your routine. The stress of getting to these holiday events or finding the energy to participate in these events can be draining for people living with Multiple Sclerosis. Getting back on your established routine can help reduce stress.
Set attainable goals – two weeks after the holidays and some of us have already broken our New Year’s resolutions. Revisit the goals that you had to start the year and make sure that the goals are attainable. Setting too high goal expectations can bring about unnecessary stress whereas goals that you can achieve could reduce stress.
As a person living with Multiple Sclerosis, understand that the stress of the holidays can leave you at a greater risk for an MS flare up. Managing that stress can help reduce the risk of an MS exacerbation. Exercising, eating right and developing a financial plan are some of the ways that you can manage stress. Following these tips and reducing stress in your life will help you avoid a post-holiday MS flare.
http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/treatments/exacerbations/index.aspx
http://www.healthline.com/health-slideshow/multiple-sclerosis-exacerbation-multiple-sclerosis-attack
Posted in Multiple Sclerosis Association of America Guest Bloggers, Multiple Sclerosis Tips, Well-being & Multiple Sclerosis	| Tagged guest bloggers, holidays, holidays and ms, Matt Cavallo, MS exacerbations, MS relapses, MS symptoms, ms tips, multiple sclerosis	| Leave a reply
Posted in Multiple Sclerosis Association of America Guest Bloggers, Multiple Sclerosis Tips, Well-being & Multiple Sclerosis	| Tagged holidays, Matt Cavallo, MS cognitive symptoms, MS exacerbations, MS relapses, MS symptoms, multiple sclerosis cognitive symptoms, multiple sclerosis exacerbations, multiple sclerosis relapses, multiple sclerosis symptoms, thanksgiving	| Leave a reply
2010 – An MS Relapse for the Holidays Part One – Relapse
In November of 2010, I was still recovering from neck surgery. My neck had been a problem since 2005, when Transverse Myelitis made my spine swell up. The swelling pushed my vertebrae and discs out of alignment. Eventually, just the stress of daily activities caused a piece of vertebrae to fracture causing severe stenosis of the spine. My neurologist told me that if I didn’t consider surgery that there was a pretty good chance that I might become quadriplegic.
I worked for a Neuroscience clinic at the time and was friends with the neurologists at the clinic. I had them each independently look at my MRI films. All of them agreed with my neurologist- surgery was inevitable. I had my cervical spinal fusion surgery in early September of 2010. In order to prepare for the surgery, I had to stop taking my MS medicine. I was also instructed to stay off my medication after the surgery while my body was recovering. During my recovery period, I became less concerned with getting back on my medication and continuing treatment. I had hit my breaking point, and I just didn’t feel like fighting anymore.
As the calendar approached Thanksgiving, I started to become symptomatic. I hadn’t been on any MS treatment for ninety days and was noticing increased fatigue and weakness. At the time, I attributed my symptoms to working fulltime while enrolled in a Master’s program along with raising two boys, ages three and one, who weren’t exactly allowing for a full night’s sleep.
While the weakness and fatigue were troubling, I also started experiencing uncontrollable mood swings. I would break into hysterical laughter at inappropriate times and then break down and start crying and become inconsolable. I am not a person who typically shows intense emotion, so these kinds of outbursts were completely out of character for me.
Still, I didn’t think that anything was seriously wrong with me. I thought that the lack of sleep with a teething one-year old coupled with my ongoing recovery from spinal cord surgery was why my emotions wer running rampant. Then I started forgetting tasks at work that I typically would complete automatically. I was also dragging my leg and having problems with vision in my right eye.
During the week of Thanksgiving, the clinic was slow. The nurses had become worried about me. The day before Thanksgiving, we had very few patients and my practice manager called my neurologist and got me an order for an MRI. I was resistant. I attributed my symptoms to the stress that I was experiencing at work and at home, saying that having to prepare Thanksgiving dinner tomorrow was the cherry on top of the cake. Still, she persisted and took me over to radiology at the hospital and got me a follow up appointment with my neurologist the following Monday.
My MRI studies came back with my lesions glowing like lights on a Christmas tree. I was defeated. When was MS going to let up? Now, I had to tell my wife on the day before Thanksgiving that I was having yet another relapse. However, when I talked to her about it, instead of crying, I started to laugh uncontrollably. During Thanksgiving dinner with her family, I was having emotional outbursts and crying about how beautiful the Turkey and potatoes looked. After dinner, Jocelyn talked to me and she wanted me to talk to my neurologist about my emotions, along with my other symptoms.
That following Monday, I found myself in the familiar chair of my neurologist’s office. He confirmed that I was having a relapse. He prescribed three days’ IV Solu-medrol to help with the exacerbation. I told the doctor that I was having these weird emotional outbursts and was concerned that the IV steroids would further complicate my already emotionally unstable state.
He told me that it sounded like I was having something called Pseudobulbar affect or PBA. According to a Healthline article, “Pseudobulbar affect (PBA) is a condition in which you suddenly start to laugh or cry. The reaction isn’t triggered by anything—like a funny joke or sad movie. You just burst into laughter or tears without any real cause, and you can’t stop laughing or crying.” He wanted to stay on course with the treatment because the PBA seemed to be related to my MS relapse, but to call him if I started to feel out of control.
Tune in for my next blog to find out how I was able to recover from my holiday relapse and strategies I used to gain control of my emotions and stress levels.
Posted in Multiple Sclerosis Association of America Guest Bloggers, Multiple Sclerosis Tips, Well-being & Multiple Sclerosis	| Tagged holidays, Matt Cavallo, MS cognitive symptoms, MS exacerbations, MS relapses, MS symptoms, multiple sclerosis cognitive symptoms, multiple sclerosis exacerbations, multiple sclerosis relapses, multiple sclerosis symptoms, thanksgiving	| 2 Replies