Tag Archives: MultipleSclerosis.net

Managing Sensory Overload

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Sensory Overload is a fairly common symptom of Multiple Sclerosis, and occurs when a person experiences overstimulation from the environment. For people with MS, Sensory Overload can sometimes make it difficult to socialize, travel, shop, and drive. This month, we asked our community members at MultipleSclerosis.net about their experiences with Sensory Overload, and how they manage this strange symptom. Have any of these strategies worked for you?

What is the relationship between Sensory Overload and MS?

Cognitive dysfunction is a common symptom of MS. Along with changes to memory, attention, problem solving, and judgement, Sensory Overload is a type of cognitive dysfunction.1

What causes Sensory Overload?

According to our MS community members, noise, crowds, strong smells, bright lights, and other types of sensations can trigger Sensory Overload. For some patients, Sensory Overload is related to myloconous, an involuntary muscle reaction that makes many patients highly sensitive to noise.2  People affected by anxiety, Sensory Processing Disorders, Autism Spectrum Disorders, and Post Traumatic Stress Disorder may also experience Sensory Overload.3

What happens when a person has Sensory Overload?

Sensory Overload can cause intense stress and confusion, and can make it difficult to think clearly, make decisions, or focus. Many MS community members experience Sensory Overload in crowded environments, such as shopping malls, grocery stores, or airports.

Community Feedback: Sensory Overload Triggers

“My friends and family love to go to Vegas. I HATE CASINOS! The noise is TOO much!!!”

“It even happens at home with the TV on.”

“Sunlight doesn’t bother me, but bright indoor light does.”

“I get so irritable with the daylight/brightness.”

“Sounds and activity and people just overwhelm me and fatigue me faster than anything!”

According to our MultipleSclerosis.net community, Sensory Overload can occur in many environments. Some patients experience Sensory Overload while traveling (such as a noisy airport), while others have trouble with bright lights, TV sounds, and radio noise. For many of you, Sensory Overload is triggered by talking: Noisy kids, people talking too loudly, multiple conversations in the same room, or people talking over one another can all lead to Sensory Overload. Keep reading for some ideas for managing these triggers!

Community Feedback: Avoid Overstimulation

“I avoid crowds or big social gatherings.”

“Noisy places, crowded places – I just have to leave.”

“I have pretty much become a homebody…I just can’t deal with all the auditory and visual noise.”

To prevent Sensory Overload brought on by crowds and loud conversations, some of our community members choose to avoid these situations all together. Especially during a relapse, you may feel like you need to stay home or spend some time alone- and that’s okay! If you feel better at home and want to avoid Sensory Overload triggers, you can always connect with friends and family through social media or the internet, or talk to your MS peers through our community pages.

Community Feedback: Limit Stress

“If I want to go to a party, I have to take a nap, wake up, drink coffee and take an Advil on the way out the door”

“Multiple conversations going on in the same room does the same thing to me.”

“Disneyland was bad…My brain gets so confused and it’s a battle to stay calm…It’s hard for me to travel to very loud busy places. Even airports can be undoing.”

To limit Sensory Overload, some community members still participate in social events, but leave when they start to feel over-stimulated. Some patients also try to avoid situations that they know will be too noisy, like by choosing a more quiet restaurant over a crowded one. If you have trouble with Sensory Overload when traveling, you may choose to visit less busy, more relaxing destinations, and if the airport is too stimulating, you could travel by car or train instead.

Community Feedback: Limit Noise

“I get overwhelmed even from the radio, grandkids when they’re being noisy, if someone talks too fast, too loud or too long….”

“I feel bad telling others they are too loud, but sometimes it hurts listens to them”

Many of our community members experience Sensory Overload when they are surrounded by excess talking or noise. If loud conversations make you feel overstimulated, consider meeting up with friends and family in quieter settings (such as at home, rather than in a cafe), or spending time with people 1-on-1. If you have friends or family members who are just too noisy, consider talking to them about Sensory Overload. While saying “You’re talking too loudly” might feel awkward, saying “Every noise feels 10 times louder to a person with MS, so I need us to be really quiet” might help people understand!

Works Cited:

  1. Simmons, Jonathan. “MS Symptoms.” MultipleSclerosis.net, Health Union, multiplesclerosis.net/symptoms/. Accessed 16 Dec. 2017
  2. G, Matt Allen. “Myoclonus – Why am I So Easily Startled by Sound?” MultipleSclerosis.net, Health Union, 19 Nov. 2015, multiplesclerosis.net/living-with-ms/myoclonus-why-am-i-so-easily-startled-by-sound/. Accessed 16 Dec. 2017.
  3. McGlensey, Melissa. “21 People Describe What Sensory Overload Feels Like.” The Mighty, 11 Feb. 2016, themighty.com/2016/02/people-explain-what-sensory-overload-feels-like/. Accessed 16 Dec. 2017.
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Loneliness, Being Alone, and MS

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One of the MultipleSclerosis.net contributors, Cathy Chester, recently published an article about MS and the feelings of loneliness—and how they are different from just feeling alone.  Cathy’s words really resonated with our community members, and we received a lot of amazing feedback about how other people deal with feelings of loneliness and MS. Here’s what they had to say:

Enlisting the Support of Animal Companions

“My constant companions, my dogs, the best friends you could have. I am glad I have my dogs, they are far more loyal than any human being I’ve met in decades”

“I’m thinking of getting another dog. I had dogs all my life, I don’t have any dogs now, and I think they will be able to benefit me. Hopefully, this will add to curing my loneliness”

“I work, read, watch TV and spend time with my dog. He is almost 10 and he is the reason I fight for what I do have”

“The only thing that really helps is my dog. He’s older, so not as active. He gives me the strength to continue in this world. He makes the days better. I don’t go many places without him”

“I don’t mind being alone at home, in my own space with my cat”

So many of you talked about leaning on a furry companion when you’re feeling down.  Pets can provide many benefits when living with a chronic condition, so long as you consider the means required to take on a full-time furry friend!

Finding Hobbies that Soothe the Soul

“I keep my mind occupied with my hobbies. I love TV and movies. I love reading for hours and hours at a time”

“I can still see enough to read my kindle, I have TV, and although not a fan of daytime TV, I have lots of DVDs. It could be worse, I know. So you just keep plugging along as best as possible”

“I can relate, some days are rough, but I try to sew a little every morning, which was something I enjoyed when I was young”

“Playing games on my tablet keeps my mind occupied most of the time”

While not all of our favorite hobbies are possible all of the time, many of you reported finding new hobbies or amending old ones to fit your new lifestyle.  TV, puzzles, sewing, low-impact exercises like yoga or stretching, or even just watching funny YouTube videos can provide a distraction and pick-me-up when you need it the most.

Adjusting Your Outlook

“I truly believe that God expects me to do something that might help others cope. We did not have a support group, so I started one in my area and I am very active in our MS Walk each year”

“I do what my body allows me. I used to be very active, now I take my happiness from what I can do. I have a lot of naps now. I don’t stress over things, it’s no good for me”

“I still try to push myself to do everything I can as often as I can. I have found that a lot of times when I sit and plan out every step involved in going out, which we have to do within reason, I can become overwhelmed and staying home seems safer. However, if I take proper precautions and don’t overthink it, most of the time I end up feeling so much better that I went. It takes a lot of effort, but usually pays off”

While we can often feel like MS is an insurmountable journey, there are many of you who have shared small mental shifts that have led you to positive outcomes.  A full mindset revolution may not always be possible, or even beneficial all the time, but sometimes, slowly embracing change, even when everything seems bleak, could be a step in a new, and positive, direction.

No matter how you combat your loneliness, just remember, you are not alone.  Our community is always here for suggestions, or even just an ear to listen when you need. Please continue to share your experiences with MS-related loneliness with us, we love hearing from you!

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When someone asks, “So, What Do You Do?”

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We recently published an article by one of our community experts on how a simple small talk question can take on an entirely different meaning when battling a chronic condition.  Life with MS can make it extremely difficult, if not impossible, to continue working fulltime, often leading to career changes, unemployment, or life at home on disability.  This can make answering the common question, “So, what do you do?” incredibly challenging.  Invisible symptoms, seemingly good days, and the difficulty in trying to get others to understand your struggle can make your answer to this hard to put into words.  So many of our community members shared their own experiences with us after reading Devin’s article, and created some really great discussion.  We wanted to share some of the stories and responses we received!

Ways to Answer the Dreaded Question

“I am old enough now that I often just reply, ‘I’m retired.’ Then people look at me like I must have made lots of money and was lucky enough to retire early”

“I do facilitate workshops for those of us living with chronic conditions so that is an answer I sometimes give. I still hate the question though”

“Accept it. You are a fulltime caregiver…for yourself”

“So true, I feel like I’m always trying to justify myself to people! People see me and say, you look fine, you could work, but they don’t realize to be at that social gathering, I had to rest all week!”

How Life Without Work Has Impacted the Community

“I was an RN, and my role was to give comfort not get comfort from others. When I had to leave my last job, my world ended as I had always known it. I miss my used-to-be life”

“I couldn’t agree more. I’ve been on disability for almost 2 years now, and I hate every day of it. When I dreamed of not working, I didn’t dream of not being able to do anything else. I thought it would be fun! This is not fun. Feeling useless is horrible”

“I miss working! It is nice to be with other people. It allowed me to forget my MS for a little while until the fatigue would set in!”

Finding the Positive in the Struggle

“My family and friends want me to make ME the priority. This whole situation is rocking my world!”

“I was an electrical engineer. I spent a fortune on good education and then MS strikes. If there is any good in all this, it is that MS makes for a great friend filter. The friends that stick by you through the MS journey have been vetted and are truly friends”

“Couldn’t have said it better. Right now going through second round of disability approval! Never in my wildest dreams would I have thought I can’t work. Everyday is different, just don’t know how you are going to feel. One day, can’t get out of bed, next day feel like you could conquer the world. We just have to stay positive and hope we can take whatever comes our way!”

Regardless of how you answer this question, it was very clear to see from the community comments that you are not alone.  Even those who didn’t share their own experience often responded with a resounding, “SO TRUE!” or “This hit the nail on the head for me!”  Responses like these remind us why it is so important to be a part of our online community and support one another on this no-doubt challenging journey.

Let us know how you handle this question, or others like it, that can take on a whole new meaning when living with MS!

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I Better Do It Now Before I Can’t—Community Thoughts!

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Recently, one of our community experts wrote an article about the struggle to find a balance between taking advantage of fleeting, “good” days with MS, and potentially overworking your body to the point of putting yourself out of commission even longer.  We received an outpouring of responses from you in the community, ranging from “OMG! Me too!” to personal stories of finding your own balancing point.  Here are some the things our community had to say:

Feeling the Pressure of the Balancing Act

“Oh boy this is the story of my life!! I get that one morning that I feel good (not great) and I am on a mission. By the afternoon, I am starting to pay for it. Factor in the heat or cold, then it is a whole new story!”

“I do the same darn thing…will I ever learn? Those few and far between good days are so great and we can’t help but to take advantage of them. It’s like drinking too much and being surprised we have a hangover. But jeez, we pay for doing something not that fun, like vacuuming!”

“I have a ridiculously difficult time with my “time-to-stop” meter; I seem to operate in an all or nothing mode…if I can remember what “all” entailed in the first place!”

“Perfect timing for me to read this, “so true to my life” article. I’m having one of my “good” days and trying to accomplish as much as I can while I can. Funny how our minds can whirl with so much activity, but our bodies don’t cooperate”

Trying to Take Things in Moderation

“This describes me for sure. I feel so good about myself on those “good” days because I get so much done, but as we well know, another “good” day is always followed by “bad” days. So if things get done, fine. If they don’t get done, well that is fine too. This is one of those things you just have to accept when living with MS”

“I’ve had to train myself to “make hay while the sun shines” and (try) to accept that sometimes good enough is…good enough. I still struggle with overextending myself though”

“This is so true. You feel good and get started with one thing that turns into more as you go and always over do it. I want to do things like I used too, then the monster inside me kicks my butt down for days! We all do what we can on our good days”

“Depends on what I do—but one strenuous day I am out of commission at least the next day. Try to do what I can and after more than 20+ years with this beast, I have finally learned to listen to my body and stop most times when it gets to be too much”

Managing the Unpredictability of Life with MS

“Hardest thing for me is to figure out exactly how much I can do each day and not lose my tomorrow. One day I can accomplish a lot, but another day those tasks will put me down for a day or two. Thankful for my good days, but I HATE the inconsistencies of MS”

“I get so happy and excited when I feel quasi-normal. I try and do as much as I can. I do this constantly, then end up unable to move for a couple of days. Just when I feel I am understanding a rhythm to this truly wacky disease, it throws me for a loop. The learning curve is a slippery slope”

We were so overwhelmed by your great responses, and it’s clear that you are not alone in your battle to manage taking advantage of rare good days, while still taking care of yourself to prevent further setbacks.  Let us know how you manage this balance, or tell us about any of your experiences!

 

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Challenges With Showering When You Have MS

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MS has a profound impact on so many aspects of the lives of those living with this condition, both big and small. While the “big” stuff is talked about more frequently, like treatments, doctor appointments, etc, the “little” stuff is just as important. One of the contributors at MultipleSclerosis.net, Devin Garlit, recently wrote an article about the unexpected perils of showering with MS. The simple act of showering can really be taken for granted when you don’t think about all of the factors involved. Between slippery surfaces, temperature changes, and even needing the energy to stand up for an extended period of time, showering with MS is not simple, nor easy. Our community members really identified with Devin’s sentiments, and they even shared their own thoughts and experiences with us. Here’s what they had to say:

Balancing in the shower is a real challenge

  • I can’t close my eyes to wash and rinse my hair unless I’m hanging on for dear life! I close my eyes, I fall! I started showering at night so that all I have to do is get ready for bed. A morning shower will destroy my entire day.
  • Washing my hair scares me. I get so dizzy.
  • Thank God for the three grab in my shower. Closing my eyes and looking up makes me dizzy, so I have to hold on.
  • Thank goodness for shower chairs, grab bars, and hand held shower heads. Still taking showers can be exhausting. I miss my baths. I loved laying and just soaking in the tub.
  • Balancing is such a challenge. I’m not glad that anyone else goes through it but I’m glad to know I’m not just loosing my mind. I thought it was just me. Even looking up at my son’s drone flying around in the sky I must find something to hang on to.
  • I do the swaying thing and usually fall backwards. I’m thankful for a small shower as when I fall back I end up just leaning on the wall.

I make adjustments to cope with the struggles of showering

  • I too have resorted to every other day and shower the night before if I have plans the next day. We adapt and adjust. Thank you again. Blessings and positive vibes to you.
  • MS made me give up baths 10 years ago and had to give up showers 3 years ago. Sponge baths are all I can manage. MS is an evil thief.
  • I’ve had to start showering at night and I hate it! I’ve also scalded myself when my brain fog had me turning off the cold water before the hot, ouch!
  • I started using a shower stool about 2 years ago because it helps. It’s hard to stand long enough to shower.
  • ‪ I have learned to work with this by only showing in early evening in case it increases the fatigue. Important not to shower unless someone else is home – safety first.
  • I sponge bathe, and shower once a week. Showering takes so much out of me, the heat, the slipperiness, the drying off. If I need to do something the next day, I shower the day before, and sponge bathe the next morning to freshen up.
  • I’ve got an anti-slip mat & grab bars in our P-shaped shower-bath.

‪Showering can be painful

  • Sometimes the water hurts or feels like it’s burning hot and it really not. When I take a shower I need 2 hours after to rest then I can get ready. I so hate MS.
  • It’s amazing that the water from a shower can actually be painful – people who don’t have MS just don’t understand.
  • It is very hard to explain to people why showers cause me pain and make me so tired that I often cancel plans and need to lay down.
  • I have burned my skin from not being able to feel how hot the water gets. I definitely can’t stand to shave my legs anymore or I will end up outside the shower on the floor.

‪Showering is exhausting

  • It is so frustrating to have to rest after a shower. I do use a shower chair, and luckily we have sliding shower doors. Though not supportive, it helps to have something else to steady yourself with other than just a shower curtain. I used to love soaking in a hot bath, but I haven’t been able to do that in years. I still have a shower every day, but it’s a struggle some times.
  • It’s exhausting! I’m considering a shower chair, but it’s hard to accept that I might need that. Balance, brain, fatigue – it’s hard to believe this is my reality.
  • I have issues with getting very weak with showers and nearly passing out before I am done, barely making it to the bed to lay down sometimes. I take lukewarm showers too. I also have repeated steps as well.
  • The shower has been an issue for me ever since I had my first child. It’s so frustrating having to rest after taking a shower. I feel like I spend my whole day resting between every little thing. I would shower at night but I sweat so much in my sleep it’s pointless.
  • Showering is an Olympic event…all the hurdles are exhausting.

What about you? Is showering a challenge? Do you have any tips to make it easier? Please, share your thoughts with us in the comments!

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What Webster Doesn’t Tell You About MS

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Webster’s Dictionary defines MS as: a disease of the nervous system that causes the gradual loss of muscle control. But for anyone experiencing multiple sclerosis on a daily basis, you know that’s only half the story. Our fantastic contributor, Stephanie, wrote an article about the “Lesser Known MS Evils” and the community loved it.

Here are some of the odd, unexpected symptoms our MS community experiences:

“It itches, it burns, it’s even numb!”

  • Itching
    • The itching has been the most annoying for me. It always happens in one part of my back, and doesn’t stop with scratching
    • My hands itch all the time. I always thought I just had dry skin!
    • I get itchy skin all over my face and even my eye lids!
  • Burning
    • My tongue has felt burnt since I was diagnosed a little over 2 years ago. 
    • The burning has been so bad
    • It literally feels like I’m burning. I get so hot and sweat just pours off me!
  • Numbness
    • I can never tell if I’m cold or hot!
    • Sometimes the left side of my face just decides to go numb.
    • I get so much numbness. You would think if it’s numb, it wouldn’t be able to hurt. But nope. I get both 

“It’s like my body forgets how to…”

  • Swallow…
    • Nothing like having to explain that my body “forgot” how to swallow
    • I had trouble swallowing when I first was diagnosed. Took me hours to finish dinner!
    • I regularly choke on my own spit.
    • Mine mainly happens with drinks, especially warm ones, and every so often I “choke” for no reason. It can be especially embarrassing at work
  • Talk…
    • Finally some validation for being a “Low Talker!” Now, when my husband says, “Why are you screaming at me?” I can justify it!
    • The cadence of my speech has definitely altered over the last 2 years.
    • My voice has been shot for years and I can’t seem to pronounce basic words anymore
  • Breathe…
    • Sometimes my body forgets if it was breathing in or out…not a good feeling, especially when I’m alone.
    • I definitely experience the breathing and swallowing issue, that is so painful and scary
  • Write…
    • Itching is one of my worst also my handwriting has gotten so bad.
    • Oh the handwriting. On bad days, my penmanship looks like a 5 year old attempting to write with their non-dominant hand.
  • Think…
  • The only way I can describe it is like a short-circuit feeling in your head.
  • My family has been the saying that I’m losing it. YES! That’s exactly how I feel!
  • It’s like pregnancy brain…but ALL THE TIME

How about you? Any strange symptoms you’ve experienced from your MS? Maybe ones you didn’t even know could be due to your MS? Share with us in the comments!

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You’re Hot and You’re Cold

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There’s no doubt that weather can have a marked affect on MS symptoms, but the question we posed to the MS community is: which season is worse for you? The community was evenly split between the two seasons-–for some, the summer heat can be unbearable, but for others, the bitter chill of winter is enough to make you research human hibernation.

See what they had to say and which faction you below to:

Baby It’s Cold Outside

  • Everything is sensitive
    • Even a slight chill causes bone-shattering pain for me
    • Even temps of 50° can leave my feet blistered with frostbite. My shoes in winter are 2 sizes bigger, just to accommodate extra socks.
    • My skin feels like it’s covered in needles
  • Can’t control the spasms
    • Cold causes major muscle spasms in my feet, legs and back!
    • My legs hurt from muscle spasms and I’m even more clumsy because my hands are numb
    • Cold makes me spasm more
  • My muscles are stiff and painful
    • Just being outside for 10 minutes in the snow and I lock up like a mannequin in a window
    • The cold kills my hips
    • My cold body feels stiff and won’t move
    • My legs are in constant pain in the winter

It’s Getting Hot in Here

  • Humidity is my kryptonite
    • Humidity is like wearing cement boots
    • When you add humidity to heat, I’m a dishrag – just done for the day
    • Humidity is intolerable – like having an anchor tied around my waiste
  • Heat sucks the energy right out of me
    • It’s a struggle to walk; I feel weak like I’m melting.
    • It makes each foot feel like 200 pounds
    • I have such a hard time walking; I call it drunk legs
    • I wilt like a weed in the Sahara!
    • Heat makes my muscles like wet noodles
  • I can’t think straight
    • Heat shuts me down
    • Heat causes my brain to just go flat, like I’m in a steam fog
    • My brain just doesn’t work in the heat

Stuck in the Middle with You

  • Any extreme temperature is awful
    • Extreme temperatures, either way, affect me very badly
    • Heat makes me feel rubbery and the cold makes me walk like Frankenstein
    • I hate extremes of both – heat makes me fatigued, cold makes me numb
  • I thought I hated one, now I hate the other
    • I used to say that heat was my kryptonite. It still is, but now I find that any mildly extreme temperature whacks me out
    • It used to be just heat but last year the cold was very hard too
    • My MS hates the heat, but I hate the cold.

The general consensus amongst the community seemed to be that 65-70 degrees is the ideal temperature, so spring and autumn take preference. But how about you? Which camp do you fall in—hater of heat or contempt for cold? With the colder months approaching, here are some tips to ensure you’re prepared for the impending weather!

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Describing MS and its symptoms – Community Feedback

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Living with an invisible illness like MS can be so difficult in so many ways. It is very common for people with MS to express frustration when it comes to getting others to understand how they are feeling and what they are going through. One of the contributors at MultipleSclerosis.net, Laura Kolczkowski, wrote an article about how she describes her MS symptoms, and a great number of our community members responded. Here’s what they had to say:

This is how I describe my symptoms

  • The MS hug I have feels like the cramp you get when you have a coughing fit and your stomach or ribs cramp up. Also it feels like Braxton Hicks contractions. I’ve lost the motor skills in my right hand. Writing with a pen has become nearly impossible. Those are a few descriptions I’ve used.
  • They keep asking why am I not smiling? I say, “well its hard to smile when it feels like your being boiled in oil, but I will try and do better.”
  • When doctors ask me how do you feel, I say, “Worse than yesterday, better than I will feel tomorrow.”
  • It’s very hard to explain. When asked, “how are you?” I usually say, “I’m doing okay.” Sometimes I say, “I’m doing well.” I wish I could say that with sincerity though! I just don’t want to seem like a downer all the time.
  • I get tired of hearing, “what do you mean you don’t feel so good? You look great.” I just smile and say thank you and stop talking. It’s just easier.
  • I say I am doing unreasonably well.

It’s really difficult to get people to understand

  • It’s so hard to get people who are around you to understand. There are times that I feel like just getting up and going to the bathroom is a chore. I’m sure people now see me as lazy. I was once not long ago full of energy and got stuff done. Now, doing the dishes or going for walks wipes me out for hours.
  • I don’t bother “describing MS & its symptoms” anymore.
  • I have been diagnosed with MS for over 9 years and my husband who has been with me all of that time still thinks I am faking the fatigue because some days I do have energy! He will never get it!
  • If you can communicate MS symptoms, how awful you feel, balance issues, fatigue etc., then people friends view us as “crippled”, less capable, and then THAT is our label. I am still looking for the happy middle ground. I am not a crippled person every day and that is the difficulty others have problems understanding, even some professionals.
  • My daughter in law had said to me, “if you just get up and try to exercise..” How could I when I couldn’t even walk? My son would say the same thing – there’s nothing wrong with you. I know somebody that has MS and they don’t look like that.
  • I don’t bother “describing MS & its symptoms” anymore.
  • When I am having a horrible flair and my speech and walking are affected, then people act like, “oh, poor baby”, but days that I “look” normal and sound normal, I hear, “well, you must be cured.”
  • ‪ I also don’t bother describing MS symptoms any more. I just say I’m fine. Most people aren’t interested.
  • Unless you look absolutely pathetic a lot of people do not think anything is wrong with you. But I will still have a smile on my face and keep on being positive despite having MS. I am not letting it beat me.
  • ‪I understand people think if they can’t see the problem you don’t have one. Lots of time my back hurts so bad I can’t stand it, but if they don’t see it they don’t understand.
  • I choose to not tell people that I’m sick.
  • I actually I have been accused of trying to be manipulative. It’s terrible.
  • There are some people in my family who, if I’m wearing a brace on my foot/leg, and they think I’m just wearing it to get attention.
  • This happens too many times. MS is truly invisible except to us.

What about you? Do people assume you are fine because you don’t “look” sick? How do you describe your MS symptoms to help people understand?

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The MS Hug – Our community shares their experiences

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MS is associated with a whole host of common symptoms, like numbness and tingling, vision problems, weakness, cognitive deficits, among many others. But then there are symptoms that are less “text book,” and therefore not as well defined. One such symptom is the MS Hug. Cathy Chester, one of the contributors and patient advocates who writes regularly for MultipleSclerosis.net, wrote a wonderful article describing the MS hug, including her own personal experience with this frustrating symptom. It turns out that many of our community members also deal with the MS Hug on a regular basis, and many of them shared their thoughts with us in response to Cathy’s article. Here’s what our community had to say:

I didn’t know what an MS Hug was the first time I had one

  • I’ve had it happen a few times. The first time I went to the emergency room because I thought I was having a heart attack.
  • I had one LONG before I was diagnosed, after the birth of my child. I only recently read about it and realized what it actually was!
  • I have had two – one before I was diagnosed. I took an ambulance ride I thought I was having a heart attack. I then had one about a month ago. It hurt so badly it felt like my lungs were being squeezed.
  • I had my first MS attack when I was 12 weeks pregnant I thought I was having a heart attack couldn’t even lift my left arm up.
  • I’ve experienced the MS hug 3 times in 3 years. It’s a scary feeling. I felt like my entire body was in a vice. I don’t ever want to experience one again, not sure what brought it on. I thought I was having a heart attack, but thankfully that wasn’t the case.
  • I can’t believe this. I just recently, as in yesterday, started having this “hug” pain and wasn’t sure if I pulled a muscle or if it was another wonderful MS “thing” that I was experiencing…thank goodness I came across this.

I find ways to cope with an MS Hug

  • I do adaptive yoga for MS (Yoga Moves MS). They have taught us a banana stretch lying flat on our backs. I do this every day. I use to have the hugs several times a day, but now maybe once a month if at all.
  • I can feel it coming on, so I just have to relax and ride it out! It can take 48 hours or more.

I really struggle with MS Hugs

  • These are the worst ever hugs; I wish that they would never happen to us.
  • I get a quarter hug – just the front on one side – usually the left. That’s enough for me. I don’t like it at all!
  • It’s more like the MS python!
  • It’s the worse hug in the world. I don’t want another at all.
  • I get them sometimes, I think it’s like a big snake wrapping itself around me and squeezing tight! It isn’t very pleasant at all!
  • When I get over-tired, I get squeezed.
  • They are horrible – it’s painful and hard to breathe. Those are the kind of hugs I can do without!!!
  • I had one recently during a relapse…no fun!
  • I take Flexeril almost daily and it still hurts. I also was glad to come across this very thing a couple weeks ago too!
  • It isn’t fun at all, since you never know when it’s going to hit.
  • Hugs are supposed to be nice. This is more like a vice.
  • I call it the death grip because it felt like a boa constrictor was squeezing me for almost 3 days.

People who don’t have MS don’t understand what it’s like

  • I stopped telling anybody about the hugs and any other issues or pain. Nobody understands unless they have experienced it. My husband says, “just work through it!!” For everything. Really?
  • My husband doesn’t get it. When I am going through a 24 hour fatigue he says I get tired to I just don’t sleep like you do I just deal with it. Ugh! It’s just not worth an argument

Even my doctors don’t know what an MS hug is

  • The first MS hug I’ve ever had I thought it was a heart attack. The hospital checked me out and I was fine. My Neurologist said that it was a MS hug, like I would know this. The doctor at the hospital did not know this. Go figure.
  • My doctors don’t even know what it is, like usual with my symptoms they say its not related.
  • Had one of these 5 years ago and I was rushed to hospital with a suspected heart attack, as the medical staff had never heard of an MS Hug!

How about you? Have you ever had an MS Hug? What have you done to find relief? Share with us in the comments!

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Community Thoughts on Apologizing for MS

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The impact of MS on a person’s every day life can be profound. There are good days, and then other days that are just downright terrible, for a whole host of reasons. One of the contributors at MultipleSclerosis.net, Nicole Lemelle, wrote an absolutely touching story about one of her particularly bad MS days where she had embarrassing trouble with incontinence, and her husband stood by her side. She shared: He asked me “Are you alright?” Totally embarrassed, I shook my head yes and continued to softly cry. He lifted me to my feet and walked me over to the toilet. I sat there while he helped me get my clothes off and then assisted me as I got into the bathtub. I ran the water and he got me towels. As I sat in the tub soaking he cleaned the urine off the floor. It was taking him a while as it had spread throughout the bathroom. I sat in the tub watching him. I started to think that he didn’t sign up for this. If I were only normal again this would have never happened. I just kept saying, “I‘m sorry. I‘m sorry. I‘m sorry.” From his hands and knees while crouching in urine, he looked at me and said, “Don’t ever apologize for having MS.”

Nicole’s story struck a chord with our community, and so many people reached out to share their thoughts and stories with us. Here is what they had to say (and to read Nicole’s full article, click here.)

It’s hard to deal with bad MS days

  • Reading anything from Nicole usually makes me cry, and today is of no exception. I’m stuck in bed going on a month now with my latest “perfect storm”. Ear infections in both ears, a sinus infection, and the recent diagnosis of Mono is simply too much to handle right now. I also got the bad news that I’m too sick to fly to Florida and see my son graduate from high school. MS has taken so much from me that I don’t recognize myself anymore.
  • ‪I wish we MS people could all just get together and have a good cry sometimes.
  • I feel so out of place at times.
  • I can sadly relate to every word! I don’t remember what normal was like. I find myself often wondering what my life would have been like, if not for MS.
  • I’m saying a prayer for you. Your post made me cry, for you, for all of us. I’ve missed “normal” the past few years, but especially the past few months. It’s gotten very hard. I almost don’t remember what “normal” is, and maybe that’s a good thing.
  • I work a full time job and also have epilepsy (seizure free 10 years now). I have to do my shot on Friday night which, in turn, takes my Saturday away because I am sick. Not much of a life. Makes me so angry
  • I’m forever apologizing!
  • I feel like I have been put in a corner my family buzzing around me. I feel like a nonentity and like I shouldn’t be around
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  • Thankfully my husband and now grown children understand completely. However my mom, who is staying with me for the next six weeks, just worries and does not understand if I take a nap that lasts until the next day. She fears something is wrong with me but won’t accept it MS that is wrong with me. My husband is away on business for the next three weeks causing me to do all the tasks at home. Cooking, cleaning, shopping. Things I could always do without a thought or care and now I struggle to complete and suffer after.
  • When I got my diagnosis last summer I cried on my husband’s chest as he hugged me. I have so much guilt of putting him through this life with this and that I may have given this to my kids. I miss me and I miss our lives before this. We were long distance cyclists, runners, skiers, scuba divers, horseback riders and now…?

I no longer apologize for my MS

  • I used to apologize all the time for being unable to do things and finally I woke up! I was at a family event and my mother was pushing me to do something I was unable to do and I apologized, and then suddenly it dawned on me, and I said NO, I do NOT apologize! I can’t do this and it’s NOT my fault, whether you want to believe it or not I’m ill and you shouldn’t even ask me to do it.
  • Reading your words made me feel more normal (what’s normal anyway?), made me sympathize, made me cry for myself and for anyone else with any nasty disease to deal with BUT your words made me realize that I don’t have to be SORRY for having MS.
  • I like everything you said about not apologizing. Right now I’m in the hospital and asking so many people to help do things at my house. I HATE IT!!! Someone is going to stay there. Meanwhile I have no clue what my body is doing this time. I’m scared I won’t return to how I was last week. I want someone to be there for me like your husband. Mine left years ago because I was no fun

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  • I also have been struggling for 20+ years. I’m 47, and I feel exactly the same way every day but we are alive and on this earth if only just to comfort & support…be strong inside.
  • I have never felt the need to be normal, before my diagnosis and after. Normal is boring. I have always been different and always embraced it. As they say, “different stokes for different folks.
  • And I thought I was the only one with a husband that goes above and beyond! He’s always trying to fix things-it’s sweet, but every now and then I have to remind him I’m not fixable at the moment! He means well
  • Oh my God. This is my story as well, but it happened in the hallway on carpet. My husband didn’t bat an eye. It’s just carpet he said.
  • I don’t feel I need to apologize for not being able to do something.
  • After your initial diagnosis of MS there is no normal. I have learned to appreciate the good days and plow through the bad days. Reading what everyone writes helps me know I am not alone. God bless you all.
  • Sounds like my husband. I am totally blessed with a man who loves me despite this horrid disease
  • Please don’t be discouraged. Your life has become something different. It’s hard to imagine, but life has a strange way of presenting new realities sometimes. Your husband is an angel sent to help; I too have an angel and I am thankful every day.
  • I remember before 2006 I would go out have fun, dance. I don’t do any of that any more, especially at night. At around 3:00pm I start going down hill. If I’m up and out I try to be home around 3. Having MS truly changed my life. I have a truly wonderful caring husband who loves me unconditionally. GOD made that possible.
  • This IS normal! And it’s not like we camped out at MS headquarters to get a jump on anybody else so we could be first to get this great disease. Nobody knows why we get MS, but I’m pretty sure it’s not our fault. We do the best we can on any given day. And if wetting our pants is part of that day, then so it is. It’s messy, but how bad is that? I’m glad you have loving patient partner to help.
  • I have been re-reading this article over the last couple of weeks. It so touchingly addresses the fear and shame that underlies the diagnosis of MS I’ve been getting my head around since February. Always the strong person, the one who is leaned on, who am I if my strength is gone? Well, reading your words shifted that perspective. Your sharing of this shows your strength, the strength of your relationship and the guts to look at things in the eye. Thanks so much for sharing this.

What about you? Do you find yourself apologizing for your MS? Please share your thoughts with us!

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