Dr. Jekyll & Mr. Hyde: MS and Mood Swings

You’re so dramatic. You try too hard. How do you stay so upbeat all the time? Why are you always so negative? You’re crazy.

These are all phrases that I have come to accept as things people will continue to say to me for the rest of my life. They all contradict one another, right? It takes you on a bit of a roller coaster when you start to think about how these could all be said to the same person, and usually within a short period of time.

When I was first diagnosed with MS, I was told that it could come with adverse effects on not only my physical health, but my mental health as well. It can be easy to become discouraged and depressed. While I try to remain positive, the one thing that makes MS nearly impossible to manage – at least for me – are the mood swings! I am constantly catching myself apologizing for my actions where sometimes an apology may not be warranted.

My relationships with people tend to become very complex because of the mood swings I am not in control of. One minute, I could be laughing with a coworker and sociable, while 10 minutes from then I could be crying silently at my desk because a thought came into my head. This may seem like something everyone goes through, but it’s different for someone with MS. There are other factors to consider in every situation; am I cranky because I’m feeling fatigued? Was the day going fine, and then suddenly, I am secretly popping Tylenol because my arms are tingling? Sometimes there is no physical cause, either – with MS comes the risk of developing depression.

While I am constantly striving to brighten my days and everyone’s days around me, there are moments where something will snap. That’s something I have spent the years since my diagnosis accepting, because it is a factor in my life that I cannot change. It’s okay to feel down out of nowhere, because there is more going on in your head than most people can even begin to imagine - literally and hypothetically!

When I come to the realization that my MS is affecting my mood and I’ve been, unfortunately, taking it out on the people around me, there are a few actions I take. I stop, think and remedy.

If I am suddenly the most unpleasant human being to be around, spewing sarcasm and negativity, I will stop and think. In reality, the person I am berating didn’t do a thing to me, so why should they get the heat? When necessary, I will always apologize! Sometimes I will say, “I apologize, I’m having a rough day with my symptoms, etc.” Sometimes I will keep my MS in the back of my mind, and say “I’m sorry, I’m just having a hard time emotionally today.” No one needs to know the explicit details of your life unless you want to share.

It isn’t the horrific mood swings that define you, it’s your ability to bounce back from them!

Ever feel the crazy bug pinch you at an inexplicable moment? Maybe it’s your hormones. Maybe it’s something that happened to you that day. Maybe it’s MS creeping up in the back of your head (no pun intended) just to say hi. If you’ve experienced the wild mood swings I have, you’re not alone, and you are not crazy! Trust me, the mood swings may never go away, but they do get easier to recognize, control and handle.

I do not look at my MS as something that will ruin my life. I see it as an opportunity to really connect with others who have exerienced similar situations as me and to work toward bettering the lives of others just like me.

No matter where you are in your struggles, you can do it. You are not alone and you never will be. Keep going, channel your emotions into something you love and smile!
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Catherine

Catherine Weston

Catherine is a professional in the medical marketing industry from Long Island, NY. She aspires to show the world that MS doesn't hold her back. She was diagnosed in 2014 and has been striving to help others overcome their fears and limitations since (she also loves sheep!). Keep up with Catherine and her adventures in wellness through her blog!

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    46 Comments

  • Sarah   Oct 5, 2017 2:23 PM
    Thank you for writing this and vulnerably sharing something that is true for so many of us. I totally relate to mood swings. While people close to me notice my mood changing more easily than others. I have some days where I am crying and hopeless and some days where I am happy, engaging and optimistic. I appreciate this article!
  • Francine   Oct 6, 2017 7:17 AM
    Thanks for your input. It was helpful to read. I can help MS patients understand what's happening.
  • jezzi_k  Oct 6, 2017 5:21 PM
    Thanks for that!! My mood swings are awful... Love your optimism. Which I need more of.
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    bbecker227  Oct 6, 2017 8:41 PM
    Literally sounds like me at work. I do not have a diagnosis but everyday i feel worse. Thank you so much for sharing!!
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    blschaar  Oct 8, 2017 4:14 PM
    The cognitive impairment and emotional swings have been the most debilitating part of my disease. I'm glad you shared this, and I am glad you said the truth- the mood swings are not likely to go away.
    I've always been the problem solver. But not so with the mood swings. They seem to be a manifestation of MS- not me or a reaction or practical mental health. It is like "it" operates outside and separate from me. I hate it. I don't control it, and the comments from others: "think of others", "you've always been that way" "you always want to label things" UGH!!
    I do think of others with almost painful empathy, I may have always been this way if I've had MS longer than the diagnosis, and yes, I want a label.

    Later this month I get a very comprehensive neuro-psyche exam (I've cancelled twice it's my last chance) Tell me what I intuitively know, I guess. Name it for me.

    It's been very isolating. It is emotionally painful. There are good days (and I am absolutely fine!), then not-so-good days where I am utterly hopeless and despondent, and I am beyond tired of asking for help. I think getting through those days is the miracle, success. I am glad I am not the only one, because frankly, I feel completely crazy and consider checking into a hospital and saying "I quit"

    But I haven't quit yet. I try to listen to something like music or podcast to keep my mind busy or it will fill with these awful thoughts and feelings.

    thanks again for sharing
  • crweston94  Oct 10, 2017 7:38 AM
    This is definitely one of the harder aspects of coming to terms with my MS and I had a feeling that others out there were experiencing the same thing, though no one really likes to talk about it. I'm glad that you all were able to share this experience with me and share your own points of view, it's inspiring! Keep going, keep being awesome, and remember that you are not alone! :)
  • Carolyn Silacci   Oct 12, 2017 10:31 AM
    Thank you for sharing, our son, who is on the verge of being 11 and has dealt with MS for over half his life already, deals with this. We often struggle with trying to decifer whether it's hormones, pre-teen angst or MS. Your article reinforces my hunch on this. Thank you.
  • Ana Costa   Oct 12, 2017 11:08 AM
    Thank you for your kind words. My "moods" already cost me my 8,5 years boyfriend (probably the love of my life) and my relation with my parent seems like a tic tac bomb. In portuguese in don't call anyone crazy cause is highly offensive but we say "you're unbalanced" wish is a fancy way to put it. I don't socialize, at all, with people with MS, and as far as I my doctor opinions, this is in my head. So is MS. Every Day I struggle with pain and hardness in one leg, wish doens't stop me of doing anything, but it hurts. I can't complain because People around Will be between "stay still, don't move, rest" to "I don't see why you are tired". My biggest afraid is the future in wish i make my Best effort no to think. I don't live the past (not True actually but i try to), the future, and i don't know what to do with present. I'm currently unemployed, trying to studied to get tools to a job (in my 31 years old), so every thing is grey now... But this is Portugal, 12 october 17, 30°C out side, sun is shining... Let's do this... I loved you text and feel inspired. Thanks
  • laurenm02  Oct 12, 2017 2:38 PM
    My mum sufferes from ms has done since before i was born she has been in a wheelchair since i was three and these things happen everyday and as much as i try to understand i never really can i can only try and support her but its hard im 15 but this has really helped me thank you !
  • Teresa   Oct 12, 2017 6:45 PM
    i was very happy to read this. i don't feel alone anymore. Have been told forever that MS only affects two emotions. How it can miss all the others is beyond me. Thank you for sharing.
  • Mike   Oct 13, 2017 7:59 AM
    Thank you for putting into words what many of us have experienced or know, but sometimes forget. My wife has RR MS and I see a lot of this in her from time to time. I sometimes lash out because this type of symptom isn't something that you can "see". Often times I forget that she has issues processing and also the mood swings. Your writing about this makes me more sensitive to what she's going through and helps change the way I deal with her when she is experiencing this.
  • Ann Rakosnik   Oct 13, 2017 8:17 AM
    I have had too many "melt downs" lately. I just smile and go on in a normal way. Normal as can be..
  • Kristi Lenart   Oct 16, 2017 2:38 PM
    Am very interested in the first couple of treatments and the next one, which is scheduled for February, which will be the entire post. How will this affect me?
  • Carol   Oct 19, 2017 1:32 PM
    I was diagnosed with MS in 1996. I would say that I had normal mood swings for a long time, but more recently I have started to have some really emotional mood swings. Glad to know that I am not alone
  • berber85  Oct 19, 2017 1:37 PM
    Thank you for putting yourself out there! I have been having this issue for a long time and I truly thought that it was only because I was already diagnosed with depression years before my ms diagnosis. It seems like for me my mood is constantly going from one extreme to the next. It's seeming more and more rare that I feel "normal". It helped a lot though when I read your post and explained to my husband that it's not just me. So thank you again!!
  • Doug Graham   Oct 19, 2017 2:00 PM
    Caregiver for a great wife with MS. She is still able to work daily, recently she has begun to struggle. By the end of the day when she gets home it is not pretty. I do what I can, but still difficult.
  • Mike   Oct 19, 2017 3:39 PM
    spot on Catherine I have the same problems tough to deal but I am trying
  • Ellie   Oct 19, 2017 4:08 PM
    Thanks for the article. I've been waiting for someone to address this. I am not alone My husband thinks I'm losing my mind.
  • Sylvia Stuckey   Oct 19, 2017 5:18 PM
    I really identified with your article. Sometimes I feel that someone else has taken over my mind when I have these mood swings or that I am bi-polar. Glad to know I am not the only one. Thanks for sharing your take on how to control them.
  • Beth   Oct 19, 2017 5:38 PM
    Thanks-this is me at work-at home-driving etc. Doing the same work to recognize it before others do.
  • TRELLA JOHNSON -EL   Oct 19, 2017 6:50 PM
    Hello, I just want to say thank you so much for helping me understand my mood swings. I have read this silently and then asked my husband to read it out loud so he can understand my time to time mood swings. I felt like I was looking in the reflection of me in the mirror. I am six years MS patient. In my journey my thoughts are my first teacher . I have been studying myself to become a free thinker and teaching my nerves to work as a team. To all my MS brothers and sisters , WE CAN WIN. Thanks with peace. Trella
  • Carla L Broadbent Rogers   Oct 19, 2017 9:14 PM
    No you are not alone. I was diagnosed in 1994. It took 4 years to figure out what I had. Me and MS have been living together ever since. I know about the mood swings. Lots of deep breathing. Be well. Make sure to put Catherine at the head of the help line.
  • souellette13  Oct 20, 2017 6:13 AM
    My mom has MS, I read so many articles about it. This is the first time I've read of anyone having the mood swings. For years my sister and I have thought it was bipolar and MS. She will be fine then every few months she has a cycle where she is the cruelest person to everyone. Police have even been involved numerous times because she gets so violent.
    We have been looking for support groups in her area and not had much luck. The few offered she would have to drive to, and she can't drive anymore.
    I'm crying now realizing how bad this disease is for her.
    Thanks for sharing.
  • Alicia Buratti   Oct 20, 2017 7:49 AM
    Thank you for sharing you described me to a T!! Thank you!!!! We are a lot alike!!!
  • Rajni   Oct 20, 2017 8:09 AM
    It's like I am reading how I have been feeling every day for past 25years. I was diagnosed in 2000. After reading your blog I felt little bit at ease! Thank you!!!!!!!!
  • E.J. Koch   Oct 20, 2017 10:07 AM
    Thanks for opening a discussion about mood swings & MS. I've had MS since 1982. I don't deem it as 'my MS.' I think of it as 'the' MS--I share it with many others in the world, so it belongs to all of us.
  • Maria Tokarz   Oct 20, 2017 11:45 AM
    Thank you for sharing this, it explains a lot. I seriously have crabby moments (I am very very good at putting on a happy "I've got my stuff together" face, but often in reality I am in need of a good cry, or I want very much to scream. I have also noticed that those I love the most are the ones who may suffer my wrath (my hubby)-I am working on literally biting my tongue (and not hard, but a gentle bite) before I speak, I take a deep breath and try to have a positive remark about all things-there are days I feel so negative about everything, I say I wanna give up, that I don't wanna do this anymore, seriously! The pain I experience no man could handle (no offense men, I gave birth and felt everything and immediately wanted a baby again right after lol)-I have the worse stabbing, like a saw in my lower back pain, my hips feel like someone is swinging a pick ax into each one, I get tingling in my arms and legs, aches really bad, like I always have the flu. In my whole live I never wanted to take pain meds like EVER!! If I didn't take my lyrica, my NORCO, my baclofen, I would have taken myself out long ago-it's so depressing, I get snippy at times or short tempered and I am a super patient person. Our pain has it's days doesn't it? Sending a hug to all of you, I know your pain, you're not alone, and we can get through this together! P.S. I'd LOVE to do a work at home job, I miss a lot of work from my pain and my legs not wanting to work, I have worked at a law office for 11 years, any ideas please let me know. I want to be a perfect employee, a better mom and wife.
  • Maria T   Oct 20, 2017 11:58 AM
    I also wanted to say, I have noticed I am not the social butterfly I once was, there are days where I want to hang out with a my few friends, other days I want to just be left alone to hide in my cave (home) and allowed to rest and hurt. I have to force myself to be social at other times. I also realized that I don't deal well with drama anymore, if you want to make me feel bad and aren't a positive person in my world I may dismiss you, that's the other kicker, very important to surround yourself with positive people, positive thinking, positive environments. My mood swings aren't as severe as others, but there are days I wouldn't be friends with me. I'm just so glad I am not alone. Thank you for that. I also realized I get anxious, like for instance, if my car won't run or it's broken down and I need to get to work, my anxiety goes through the roof, I began chattering loudly and crying, my husband tells me to calm down, and that only makes it worse, if he would just say, "let me try to help you," I think I wouldn't get upset with him too, but sometimes he throws logs on my already burning bonfire-if we are having a moment, step away, speak calmly to us and ask, "how can I help," it seriously may take the fight or panic or whatever right out of us.
  • Cablegal   Oct 20, 2017 11:58 AM
    I appreciated this article and am going to print it out for my boyfriend of 13 years. I know I am driving him insane, and am afraid he is going to leave me. I have a double whammy of being diagnosed bi-polar in 1995, and diagnosed with RR MS in 2009 - symptoms came out in 2008. So, I never know if it is the MS that is creeping up causing my intense mood swings, or my bi-polar meds are not working well, or if it is a combination of the bi-polar and the MS. As he said, I can go from being completely happy to completely angry and upset within a matter of minutes, back to normal again. He likes to say that there are "two of me". I feel badly for him because I take him on a constant roller coaster ride with me. My really intense mood rapid swings started about 3 1/2 years ago. I don't know what I would do if he wasn't a very good humored funny, relaxed/laid back, flexible guy. But even then, there is probably only so much one person can take.
  • heatherc5581  Oct 20, 2017 3:40 PM
    Thank you for this article. It helps me to understand more about my mood swings. Now that I know what's causing them. All this time I thought I was crazy and going nuts and turns mood swings are totally normal. I have had MS for 14yrs and I'm still learning new stuff. I enjoy learning new things, helps me to get better grip on all it. Thank you again
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    gjlisGLORIA  Oct 20, 2017 4:05 PM
    Wow! How true is that!
    Thanks for sharing, Catherine.
  • Darla Petersen   Oct 20, 2017 4:14 PM
    Thank you for your honesty. I was diagnosed with MS in 1994 after a serious car accident in1993. Wow! That was awhile ago. I'm glad to be alive though I live in a wheelchair. I guess that's how I became Miss Wheelchair Utah 2016 the Second. the first went to Miss Wheelchair America and out of all the other state winners, WON Ms Wheelchair America 2017. so they chose another winner for the other six months. My platform for my "passing the crown" to the new Utah winner for 2017 was and always will be: Take Up Your Torch and Shine!" and since you do that very thing, again I Thank You! Meg Johnson is the sweet woman that helped me be in 8 pageants. this is a longer story... but this will do. God bless all you do , and I have a website, a gift from Mrs. Johnson who does not have MS but also lives in a wheelchair. my website is: DarlaPetersen.weebly.com and feel free to share this with friends and family. my songs are also on YouTube, same name
  • bonnie obrien   Oct 20, 2017 6:48 PM
    CHEERS for your comments. i try to spread sunshine on my good days. thanks for your message.
  • Emily   Oct 21, 2017 10:03 AM
    Recently diagnosed. The tears keep falling.
  • Carolyn Cooper   Oct 21, 2017 10:19 AM
    I have lived with MS now for 21 years. Now that I am 59 years old, my friends around my age, complain about feeling tired, having muscle aches, mood swings, and forgetting where they put their car keys. I have to keep from laughing --- that has been my daily life since I was 37 years old!! Gee, now my peers get to experience it. Maybe because of my MS, these "new" symptoms are not "new" to me and seem to have much less of an emotional impact then they do on my "healthy" friends. At least now, some of those that used to tell me "You look so healthy, I'd never guess you had MS," now understand a little bit more about why I couldn't go hiking in 90 degree heat, or stand in line for hours for concert tickets, or become upset over things they considered trivial. The first few years after my diagnosis were hard and I was terrified to plan for any thing in the future. I never knew what my future held. Then I said, the heck with this! I went on trips by myself when I wanted to see new places, I went to concerts and events, and never passed up on anything. It got to the point where MS no longer had control over my life. I still have days, usually related to work, where I am doing my best, but I am just not fast enough or accurate enough and I become overwhelmed and an on the verge of crying. Fortunately, I work from home and if I need to scream or express my frustration I can! And believe me, sometimes I do!!!! Then I quietly collect myself and repeat the mantra, "This too shall pass."
  • Tony   Oct 21, 2017 7:25 PM
    Thank you for Sharing this information. The situation you describe is something I have been struggling with for years. I have been told that I am bitter because I do not accept having MS; in spite of fighting the MS battle for over 16 years. One would think I would get better at handling the Dr Jekyll over time...but it seems to be getting worse. I find myself apologizing more &more over time. I am at a loss as to how to control the swings until after they occur. At times, I can feel the rage, but can not control it. I am open to suggestions
  • Ronda Goad   Oct 21, 2017 11:54 PM
    My sister in law has this same thing here and her mood swings are getting the best of her ,what can I do to help her out with that part and at times she can't get her medication for that because she doesn't have the money for that purpose. Please get back with me on that one to find a way to get help for her .I will be waiting to hear from you on that part and THANK YOU FOR YOUR TIME AND HELP..
  • Freddy   Oct 22, 2017 2:14 PM
    Thank you, I often have to keep reminding myself that my wife has MS (2012). Very tough to try and understand what's going on, when you know you haven't done anything to provoke these reactions.
  • Ken   Oct 23, 2017 12:49 PM
    Thank you for writing this. It was just what I needed to read today (and often).
  • Edward Morris   Oct 24, 2017 10:57 AM
    If you haven't written a book, you should. This article came to me right when it was supposed to. Thank you SO MUCH!!!!!!!!!!!!!!!!! In Solidarity, Edward Morris (Portland, OR)
  • glbran  Oct 25, 2017 10:37 AM
    Wow, you really hit the nail on the head. It has taken me a long, long time to understand that I am many different people. My moods are so unpredictable I close myself off to everyone. I don’t want to hear the negative comments from my wife or anyone else. I would have never believed one could go through so many different moods in a day.
  • Jeppe T Mortensen   Oct 27, 2017 11:08 PM
    If I can't pleasure the lady of my dreams without actual touch I will learn, I wish you to feel passion, trust, lust, fidelity but all doesn't matter unless true to yourself first. All else is simply a choice. I can feel the desire and sooo wish to touch and please, but I would lay naked with you and be okay as I will not give in, maybe a curse. I would rather feel the strings of dreams. Have you ever closed your eyes and wished. Well I want to be able to slide a hand threw your hair of my intentions , I want to go back in time and let that little girl know what she would face if she would trust in her heart as she would know when her partner in life was ready for her to become the angel he believed her to be, ask her to keep a lady always safe, I wish to build a foundation and return something to a possible woman; May I ask your soul to cleanse the doubt away

    . Nervously I can walk in and present my heart as it is mine to give or hold.

    I would rather just hand over my heart, ask to

    take your hands in mine you the way you may have never been given or shown. I believe in me, I will not doubt a word or use anything but trust, honesty, respect and I will cherish your decision. I appreciate the distance we have come threw and the roads traveled to be here at this moment, for me to ask for more than you have ever given to a man, let alone been offered. If I think of kissing you while traveling, or you me. The vehicle will stop will you take a moment and walk threw this life with me?
  • Phranky   Oct 30, 2017 2:51 PM
    Well, that explains the roller coaster ride of varying degrees of depression.
  • Pat   Nov 1, 2017 11:10 AM
    As a friend of several people with MS I am looking for any guidance on the best way to help my friends cope and deal with the difficult days. To demonstrate care and compassion when all they feel is despair and depression. I value the friendship they provide and the gifts and joy that they bring to the lives of others and I want to do the right thing to be there when they need me but not force anything that can make the situation worse. Catherine Weston, I really appreciate your sharing and perspective and am praying that you can shed some light on what I can and should do.

    O God, grant me the serenity to accept the things I cannot change the courage to change the things I can and the wisdom to know the difference.
    Living one day at a time, enjoying one moment at a time. Accepting hardships as the pathway to peace. Taking, as he did, the sinful world as it is, not as I would have it. Trusting that he will make all things right if I surrender to His will; that I may be reasonably happy in this life, and supremely happy with Him forever.

    Prayers and Peace to all that suffer the direct or indirect impact of MS
    Pat
  • Joanne   Nov 12, 2017 1:14 PM
    Thank you for sharing. I was diagnosed at age 62 - 10 years ago. I always felt that I had an evil twin inside of me that would just take over my body and say hateful things. My husband of over 40 years has coped so well. With his own heath issues now this has become harder for him and I want to make his life more comfortable. This is not an easy disease for any of us living with it or living with someone who has it. But it did make me feel less alone to read all the comments. Thank you all for sharing and caring.
  • John Wolff   Nov 15, 2017 7:39 PM
    The MS community, its research and its publications seem to concentrate on the physical. I have been wondering for an extended period of time when mental health would a topic. Thank you for Dr. Jekyll & Mr. Hyde.

    My "wondering" has included especially what is going on in the head of someone with MS. What role do past, present and future play. Is there a mental monologue or a mental dialogue or is it predominantly spontaneity or something else?

    Thanks again.