MS Mood Swings

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You can only blame lack of sleep for so much before you start asking “Why is my mood so inconsistent!”  Turns out, it’s not just fatigue – it’s actually a common symptom of MS! As with many invisible symptoms that can occur with MS, mood swings can have a profound effect on relationships and emotional health as a whole.

Our phenomenal contributor, Devin, described this frustrating symptom perfectly in his recent article “Invisible Symptoms of MS: Mood Swings” and the community rallied behind him sharing their own stories and support.

It became clear that this is not uncommon, and while difficult to manage, having the support of other people with MS can make all the difference. Here are just some of the comments our community members shared:

Sometimes, even I can’t figure out why I’m upset

  • I never thought my mood swings could be MS- related. Sometimes I can’t explain to myself why I’m reacting as I am.
  • Since my diagnosis, I cry at every chick flick and even the Budweiser Clydesdale commercials! I can’t seem to get my emotions together sometimes
  • There are times I know I’m picking a fight with my husband about something stupid, but I don’t even know why I’m upset!

I just thought I was crazy!

  • I always thought it was just who I am. An emotional roller coaster with frequent break downs.
  • The problem is most people don’t know about this symptom, so I get more depressed because I feel like people think I’m losing your mind.
  • I always know when my meds aren’t working because I start to feel like I’m going crazy – then I have a lot of people to apologize to
  • I just thought I had gone crazy: I didn’t think it could be a MS symptom. It puts my mind at ease to know I’m not alone.
  • I thought I was just a raving lunatic!

Knowing why is one thing; managing these swings is another!

  • It feels normal in the moment; not until after that I look back and realize just how moody I was being. I know it’s the MS, but I don’t know how to control it
  • I definitely get moody, but what can you do? I just live with it and try to stay strong! Laughter is key.
  • I can feel it coming on – as soon as I start to feel practically homicidal I isolate myself in my room and wait it out.
  • Knowing my MS was the cause of my mood swings was a relief, but finding ways to conquer them is the next challenge.

How about you? Have mood swings impacted your life? Have you found any good approaches for managing these? Feel free to share with the community – you are not alone!

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Uhthoff’s Phenomenon: Keeping Heat Related Symptoms at Bay

“Uhthoff’s what?” you may be asking yourself. Yes it is a funny name, but it has a more serious meaning. This common symptom of MS can be very troubling, especially when it happens abruptly. Uhthoff’s syndrome or phenomenon is described by clients as a dimming or reduction in vision, usually associated with exercise or overheating.

A 2011 study finds that approximately 60% of MS patients report heat sensitivity. Heat sensitivity is defined as a temporary worsening of MS symptoms when the weather becomes hot or humid. These symptoms are also common when running a fever, or participating in exercise activities.

While Uhthoff’s phenomenon relates solely to vision issues, in the Swedish study heat sensitivity was also discovered as a significant factor relating not only to fatigue but also to several other common MS symptoms such as pain, concentration difficulties, and urination urgency.

Heat sensitivity can cause a number of challenges to individuals with MS. One of the more challenging issues involves determining if the change in symptom is caused by MS disease activity, or other causes such as heat. This experience can be worrisome and cause individuals to fear that their MS is somehow getting worse, or possibly progressing.

So what can you do to combat the heat? Be mindful of how heat can impact your MS symptoms. Planning is the key to keeping heat related symptoms at rest; plan activities around cooler times of the day, either early in the morning or later in the evening.

What tips and tools have you developed to keep heat related symptoms at bay?

References:

http://bmcneurol.biomedcentral.com/articles/10.1186/1471-2377-11-27

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Meet MSAA’s Newest Guest Blogger – Lisa Scroggins

I am Lisa Scroggins, wife, mother, CPA. I was diagnosed in 1991, and my mother had MS. There’s more: two of my five siblings also have MS. So, obviously, I am a person with MS: a patient. I don’t like to be called an MSer. I also resist substituting different words for the letters, M and S, such as “Made Strong:” I like to think of myself as an advocate, and I have written to members of Congress on various issues. I’m currently in the process of trying to correct an inadequate parking situation in my community¹.

If I’m brutally honest with myself, I just don’t like being a disabled person, and I have hope that I can improve. Having officially stopped working because of disability, I am having an identity crisis, as well as an existential one. I know I have pretty severe limitations, which mostly have arisen in the past three to four years. There’s my first clue: it seems as though it’s very recent, but I just typed the truth: my walking ability has worsened over several years, not the one or two that I’ve been telling myself. It has been only a couple of years since I’ve worked, but it’s important to know that I experienced a life-changing series of events which have left me reeling to this day. In other words, it’s complicated.

I’ve had MS for a very long time. I’m lucky, in that for many years, my symptoms were invisible to others. Although they were always in the back of my mind, I had learned to compensate for them.

First example: I’m shopping in a Sam’s Club store. It’s a huge building, and as is typical, I’ve walked around for a while, just browsing for things that I might want to buy, when I realize that fatigue² is kicking in. I’m not prepared to check out, with all that entails: getting my payment and membership cards out, unloading my items to the conveyor belt, putting them back in my cart, storing my cards safely, but keeping my receipt ready to be checked before exiting, trekking to my car, unloading my purchases into my trunk, parking or maybe just abandoning my cart, climbing back into my car where I will rest for a few minutes, while hoping that no one is idling behind me, waiting for my parking spot—oh the pressure! Also, I’m a pretty good distance from the checkout lines, and those lines were fairly long at last glimpse. What to do? I head over to the book section. I park my cart so that hopefully, it won’t impede any other shoppers, grab a few books to peruse, and sit down on the floor to rest and look through the books. Occasionally, I get some questioning looks, but hey, you do what you have to do.

Second example: I have what’s known as a “neurogenic bladder.” Real world translation: I experience urgency, which means I have to pee now! It doesn’t matter when I’ve last relieved myself, or how much my fluid intake has been. (That commercial for an overactive bladder medication is spot-on and even cute! The bladder IS in charge and drags me where it will.) Whenever I enter a building, if I don’t already know where the bathrooms are, I focus on finding their locations. When driving, I have been known to pull over to the side of the Interstate when I couldn’t make it to the nearest restroom. The technique involves putting on my car’s flashers, exiting my car, rapidly walking over to the passenger side, opening both front and rear passenger doors to provide a modicum of privacy, grabbing a fast food napkin or two from the map storage compartment door on the front passenger side for, oh, come on, you know what it’s for (always kept stocked for emergencies such as these!), and doing the squat. There’s just no way to do this in a dignified manner. I always feel guilty for littering. The pre-MS me would never have done such a thing.

The nature of my MS has changed and its effect on me has been nothing short of dramatic. As isolating and terrifying as it is, I know there are thousands of other people going through the same thing. The need to redefine myself in this new state of existence, is a powerful one. In our culture, what we “do” defines us. I’ve been treading water for some time, trying to figure what it is that I “do” now. If it’s true that “necessity is the mother of invention,” I’m looking for some tools. Maybe we can search together.

¹ You may have thought, as I did, that the ADA fixed this stuff, but that is incorrect! An explanation in a future blog post is in the making
² Often cited as the most common and disabling symptom among people with MS.

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Keeping That MS Monster Asleep

By: Lauren Kovac

Ah, spring is in the air. It means pollen-covered cars, sneezing, and nesting. Getting organized for the coming season is something we all want to do. Organization can help MS people feel a small sense of control.

I was extremely organized, before the MS changed that. It messed up my neatness. Actually, it was more like a tornado barreling through my nice organized piles.

I have learned to turn a blind eye, take a deep breath, and have some chocolate. However, some things cannot be left. With MS, you constantly have to learn to find alternative ways to keep the MS monster sleeping.

With three boys and constantly using my clothes for target practice, a laundry mountain cast a dark shadow on my life. Getting the basket from my bedroom to the laundry room was an obstacle course. My solution is now to push it with my walker on a plant stand with wheels.

Spring means soccer too. Games are fast, so outings are short. I get some much-needed vitamin D and adult interaction. Enjoy outside while you can. Take advantage of nice weather, before the heat comes. It is nice to enjoy the fresh air without being a bug buffet.

Interaction face to face is nice too. I love our dog, but he can’t talk back. He is not a conversationalist. He only has one sound and it sounds like barking. He will whine occasionally, if you are eating cheese. His conversations are rather one sided.

I relish my weekly therapeutic horseback riding lessons. The quiet of the farm, the green pastures, flowering trees, and even the horse poop means freedom. Swirling whirlpools of shed horsehair in the breeze means I can enjoy outside.

Once it gets hot, I embrace my inner hermit. Until then, I soak in the lovely weather, take an allergy pill, and get some rays. I like being a toasted mushroom instead of a pasty one. Sun, interaction, horses, and watching my son’s soccer games are great ways for me to keep that MS monster sleeping.

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Spring Resiliency Reminders for MS

If you live along the east coast, like most of us do here at MSAA, signs of spring are showing. We have battled another harsh New England winter and are looking forward to the first signs of spring. Spring has always been my favorite time of year; to me spring flowers represent resiliency. The tiny buds fought the tough winter to show their beauty to the world once again.

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“Resilience is very different than being numb. Resilience means you experience, you feel, you fail, you hurt. You fall. But, you keep going”. — Yasmin Mogahed

Having a diagnosis such as MS can inspire and drive an individual to find the resiliency that is buried within. For those with Relapsing Remitting MS, the ebb and flow of life between relapses is proof of the resiliency that exists. For those with more progressive forms of MS such as Secondary Progressive MS or Primary Progressive MS, the daily adaptation and adjustment to a new lifestyle is also proof that resiliency exists. Recognizing and acknowledging that change isn’t always a bad thing and learning to be OK with the new normal is also proof that resiliency exists in MS.

Share the ways you have remained resilient with MS in the comments below.

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MS and Making Plans: Community Thoughts

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There is a lot about MS that is difficult for “healthy” people to understand, and one of the most frustrating things is that it can be really difficult to make plans in advance. You just never know how you are going to feel the following day, or even the following hour. One of the amazing contributors at MultipleSclerosis.net, Matt Allen G, wrote a wonderful article about his frustrations with being unable to make plans with friends in advance, and then some people not understanding why those plans may have to change at the last minute. Matt’s words really resonated with our community, and so many other people shared their thoughts and experiences with us. Here’s what our community had to say:

It’s emotionally draining

  • My head tells me I can do it but my body won’t let me. For me this is the worst. I look around during my house and there is such that needs done but I just can’t. Depressing.
  • I get so sad and discouraged when I see people posting pictures of everywhere they go and the fun they have…and I do well to get to the store once in a while.
  • This is one of the hardest parts of staying in the family dynamic.

MS Doesn’t Care

  • MS doesn’t care if your children need you to drive them here, there, and everywhere. MS doesn’t care if you got all dressed up and now you need a nap. I have gotten all dressed for church and then as my husband is backing up the van I ask him to stop as I need to go back in the house. Then I take a nap, fully dressed, too tired to undress.
  • I have an international trip coming up, and the anxiety alone is killing me, but I figure you only live once. If I let this disease deter me from making plans and living my life as best I can while I still can I’ll always regret it. Tomorrow is not promised to anyone. You never know when there’ll be a “next time”.
  • I never know when I am going to feel better; 10 minutes good, then it’s downhill.

Tips

  • I always get trip insurance and have used it. It takes the pressure off. Make sure it covers pre- existing conditions as most don’t. I think it is Travel Guard. You have to purchase it within 2 weeks of booking a flight or trip. Really truly despise this part of living with the monster.
  • My experience has been to make plans with the people who understand that I will do what I can. I go, do what I can and find happiness that I did what I could and had an experience that I will remember.
  • I stopped making plans because I never know how I’ll feel. One day at a time.
  • Fatigue and meltdowns make it so difficult to do things around the house. I’ve learned to do things as I can because pushing to finish anything isn’t possible for me.

No one understands

  • This sums up my life perfectly. I HATE the unpredictability of this disease. Especially when “I look so good!” but my body’s numb. Or I can’t lift my leg. People just don’t understand what its like. No matter how much they try to empathize they’ll NEVER understand it. Like the phrase goes, “no one Gets MS Until they GET it”.
  • This is something I wish all my family and friends understood.
  • No one understands what MS is doing to you… You have to listen to your body. You will lose people because they just don’t understand… Keep positive and Never ever give up!!
  • I wish my grown children would understand this.

I won’t let MS run my life

  • It never stops me. I’m going to Thailand, jumped out of a plane, to work I drive a modified car, and I play wheelchair basketball for my local team.
  • One day at a time is all you can do.
  • It’s not about having a good day. It’s about having a good minute!

What about you? Do you struggle with planning? Do you find that friends and family don’t understand?

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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.

*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 Unspoken Symptoms

As we discuss various MS symptom challenges during this month’s MS Conversations blog, we wanted to talk about some symptoms that may be more challenging to disclose or discuss with others at times. This week we touched on the condition of PBA and its difficulties, but there are also issues with bladder, bowels, and sexual function that are some of the other more private, less disclosed symptoms experienced by those with MS. These symptoms can feel a bit embarrassing to talk about or discuss with others at times, and for this reason are sometimes the ‘silent’ symptoms one shies away from even discussing with his/her doctor. Even though silent, these symptom challenges can be loud in their presence for individuals.

Symptom issues with bladder can vary in MS. Because MS affects the nerve responses sent to the bladder that control sensations and contractions, symptom issues can include difficulties with emptying and storing, or both. There are several different medication treatments along with diet and fluid management planning that can assist with these symptoms. If you experience these issues, talking to your doctor about your symptoms can help to initiate some type of treatment plan to address these issues and help manage them. If your family and friends are not aware of this symptom and its relation to MS, this can possibly be an opportunity for them to learn more about the disease and its symptoms so they have a better understanding of what you’re experiencing. But remember, it is your body and the information you wish to disclose or not is your decision. However, when others are more educated and aware it helps to keep lines of communication open so that if needed, it may be easier to discuss the issues you’re facing with additional support.

Issues with bowel function in MS can be due to various causes as well, including lesion effects in the nervous system and medication side effects. Constipation and diarrhea are symptoms that can occur and be influenced by diet and medication practices. Discussing these symptoms with your doctor can help to form a plan of action to manage the challenges and decrease their effects. And again, while including those around you in your experiences can be difficult at times, it may increase understanding and communication when you want to reach out to talk about some of these more challenging symptoms.

Being a private and personal matter, sexual dysfunction symptoms in MS may not always be disclosed and talked about, even with one’s healthcare team. It can feel awkward at times to discuss such personal issues and the difficulties you may be having. Both men and women can experience these symptoms which can present in different ways; loss of libido, sensation and arousal changes, or even pain during intercourse can occur. Along with medication management for these symptom challenges, counseling can be another strategy used to discuss sexual issues being experienced. Communicating openly about the problems can increase cohesiveness and support amongst partners and allow for discussion of alternative sexual satisfaction practices. Education around the ways in which MS can affect sexual function and intimacy is an important piece and allows your partner to understand what you’re going through and how you can work together to manage it. That is why it’s important to try and include your healthcare team as well, to recognize and talk about the issues in order to find ways to manage the symptoms.

The symptoms that can occur with MS all have varying degrees of difficulty and challenge they bring to those affected. But it’s important to know that you are not alone in your experiences—others have faced similar obstacles and have also been reluctant at times to discuss symptoms. This is another element that MS unfortunately tries to impose on those affected—to intimidate or shame because of certain symptoms. But this elicits the moment and opportunity where individuals with MS can recognize their symptoms and discuss or disclose them as they wish—to educate others and increase awareness to bring MS out of the shadows and darkness and into the light.

What are some ways in which you’ve managed these unspoken symptoms of MS?

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Managing the Emotional Impacts of Challenging Symptoms

The first few years living with a diagnosis of multiple sclerosis (MS) are often described as a whirlwind. No one prepares for a chronic illness, especially one as unpredictable as MS. While you work closely with your neurologist and other specialty care physicians to manage the physical symptoms that may present, how do you manage the emotional impact that a chronic illness may put forward.

Symptoms such as Pseudobulbar Affect that are characterized by sudden, uncontrollable expressions of laughter or crying without an apparent trigger can be challenging to emotionally manage. These episodes often occur in public settings and can draw unwanted attention. It is important to remember that Pseudobulbar Affect is a symptom that is a direct result of a neurologic condition; it is not an indicator of a hidden or suppressed feeling. For some who experience this symptom, they question whether or not the inappropriate laughter or crying is an actual feeling that perhaps they were not aware of; this is not the case.

Embarrassing or troubling symptoms call in to question self-worth and can directly impact the way you feel about your MS. These feelings are normal and come along with the grieving process that is associated with chronic illness. Finding support through a friend or family member or even seeking the support of a mental health counselor can be beneficial. The following tips can also be of support during these emotional times:

  • Remain present: Harboring too much thought and attention to things in your past or in the future can cause unwanted stress and anxiety.
  • Value yourself based on your present abilities. Remain positive about what you can do now, versus what you could do before.
  • Put yourself first! Understand your needs and identify ways to meet those needs.

The MS Conversations blog is a support to the entire MS Community. Please use the comment section below to share your story, or to support to another individual with MS.

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Why Do I Cry or Laugh Inappropriately?

As MSAA continues to highlight important MS symptoms during MS Awareness month, this week, Pseudobulbar Affect Awareness Week (week of March 14, 2016), MSAA invites clients to learn about this lesser-known but very impactful symptom by watching a recently produced video featuring Daniel Kantor, MD.

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In this one-on-one interview, MS expert Dr. Daniel Kantor provides valuable insights into understanding PBA and its cause, the differences between PBA and depression and other mood disorders, guidance on discussing PBA with your doctor, and ways to evaluate and treat the condition.

More information, including a survey on PBA can be found at mymsaa.org/pba.

Share your symptom story in the comments below. How has PBA affected your life?

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