You Know You Have MS When…

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People with MS tend to be very familiar with the typical symptoms associated with having this condition, like pain, fatigue, difficulties with mobility, numbness, tingling, bowel and bladder problems, among others. However, there’s so much more to having MS than what anyone could find in a textbook or a pamphlet at the doctor’s office. We wanted to know more about the everyday life of those with MS, so we asked our Facebook community to respond to the statement, “You know you have MS when____.” More than 150 people replied! Below is a summary of the feedback we received.

You just feel exhausted

  • After sleeping a full 8 hours, you still feel like someone used your body to run a marathon
  • The simple task of washing your hair is exhausting
  • Your kids think that all you do is sleep and that you’re sick all the time
  • You are so tired that you cry, and no amount of sleep helps
  • Everyone says, “You look tired – what did you do last night?” and you respond, “Nothing”
  • You’re too tired to get up, but you just end up lying around in bed thinking about what you should be doing
  • You wake up with a little bit of energy, bounce upstairs and fix breakfast, only to end up exhausted and needing a rest
  • You are tired or fatigued all the time, and you can’t find the energy to take a shower
  • Your battery depletes after 45 minutes of walking, and you become a complete physical mess on your feet
  • Feeling well-rested is a thing of the past
  • You must have a plan B, C, D, etc.
  • You need a nap before you go to the store to get coffee, and then need a nap again before you put it away
  • It takes HOURS to pay bills and organize your family calendar when, in the past, you were a successful nurse manager and an expert at multitasking

The weatherman is not your friend

  • Summer used to be your favorite time of year, but now sunlight, heat, and humidity keep you inside like a vampire
  • You’re the only one in the room saying, ‘Is it hot in here?’
  • When 70 degrees feels like you’re standing inside of an oven
  • When you can’t do any outdoor activities due to the heat
  • When summer heat hits the triple digits, and you can barely breathe
  • Your body is better at predicting the weather than the actual weather man

Getting around and maintaining control of your body is challenging

  • You can’t play with your kids or take a walk with your husband
  • You fall over when standing still
  • Your upper body starts to walk, and your legs don’t get the memo in time
  • You don’t even realize it when your legs go out from under you
  • You wonder if you’ll be able to climb the four stairs it takes to get into your office at work
  • You just tip over when standing still on level ground
  • When you wake up one morning, and you’re paralyzed on one side of your whole body
  • You keep tripping up over nothing
  • You are always dropping things
  • You are in the market shopping for groceries, and a fireman stops you because your face is drooping and you are confused, and they think you have had a stroke
  • Your hands are asleep and they don’t wake up
  • You are eating dinner and your arm suddenly jerks and your food goes flying across the table
  • You walk like you’ve had a few cocktails, but you haven’t had a sip
  • You find that no one around you realizes how hard you have to work to keep up, and you just end up getting left behind
  • You have to stop mid sentence because you’ve lost your train of thought
  • You take the dog for a walk around the block,and your legs feel like they are encased in cement
  • You walk like you are dancing to Michael Jackson’s “Thriller”
  • When your knees are locked as though there’s a magnet holding them together
  • When you go from 0 to pee in two seconds flat
  • You have to hold on to walls because you lack balance
  • You trip over something earlier in the day because of ‘drop foot’ and later that day you look at your scraped toes and wonder what happened
  • You decide being an unwitting participant in a wet t-shirt contest is better than running for cover during a surprise rain storm at an amusement park
  • You can’t stand without assistance
  • Your head goes one way and your legs another
  • You have to look at your hand and tell it to move
  • When you can’t pass a field sobriety test while sober
  • Despite only being 41, you walk like your 76 year-old mother
  • You have to lean your elbows against the shower wall to wash your hair

 Your mind isn’t as sharp as it used to be

  • You lose your train of thought while mid-sentence
  • You walk into a room and forgot why you went in there in the first place
  • You have the hardest time trying to say what you want to say, and your words come out making no sense
  • You describe your symptoms, and your neurologist looks at you as if you were speaking Greek
  • You get confused when there is too much going on around you; you can’t even place an order at a fast food restaurant
  • What was the question?

Pain and numbness become a part of everyday life

  • Your feet feel like they are on fire or you have frostbite
  • You are numb and tingly and have burning sensations all over
  • You get unexpected zaps of excruciating pain in your face, arm, leg, and you try not to scream
  • You are screaming from pain as what feels like loose electric wires whip out of control at the base of your spine
  • You feel like you are being stabbed, and you have a tingling feeling all over your body
  • You can’t feel your fingers, but you feel like you’re walking on rocks, barefoot
  • You feel continual electric shocks down one whole side of your body that are strong enough to make you gasp out loud
  • You “feel” noises that go straight to the bone with subsequent weird pain!
  • Your body feels like you got into a fight with Mike Tyson, then got run over by a semi, and then kicked to the side of the road
  • You feel like you are sitting in a wet bathing suit because your butt is numb

People assume that you are fine

  • When everyone assumes you are normal and they say, ‘Let’s go – get with it’
  • Your friends and family think you are fine because you look the same, so they think you are just being anti-social
  • You get angry hearing, “Gee, you can’t be feeling bad … you look too good”

Does any of this resonate with you? How would you complete the statement, “You know you have MS when ____”?

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Comments

  • Sandi says:

    This sounds A LOT like fibromyalgia and CRPS, because I have both fibro and RSD//CRPS and I have almost all of the symptoms described above , and I have never been diagnosed with MS. Can it be both? Or maybe people are just being misdiagnosed. Who knows!!!

    • Sweetjewelstar says:

      I have heard from people that have fibromyalgia has a lot of same symptoms but does fibromyalgia cause lesions on the brain found by MRI and spinal tap are the tests used for diagnosis of MS. My symptoms when diagnosed were identical to a stroke but those two tests are what determined it was not a stroke but symptoms of MS. Hope that helps

  • Jacklyn Brown says:

    Your feet are numb but they ache and burn and make it hard to sleep.
    Your legs feel like they are on the verge of cramping all the time.

  • Darlene Reidy says:

    You know you have MS when…you accept that the only way you will ever wear your stiletto heels again are when you are in a wheel chair.

  • Tom Cummings says:

    You feel great after an accomplishment that you KNOW a person without MS would have quit!

  • Beth Anne Fesker-Young says:

    You know you have MS, when your friends get upset for canceling plans, because you are unable to do your favorite hobbies anymore.

  • MultipleSclerosis.net says:

    Thank you, everyone, for joining the conversation and sharing your experiences with us! We hope you find strength in knowing that others with MS understand what day-to-day life can be like with this condition.

  • Excellent post. I’m facing a few of these issues as well..

  • Eric says:

    Thank you all that shared. I’m new to all this; as I lay in this hospital bed I’m still grateful.

  • Deborah says:

    I was diagnosed with Sjogren’s about 4 years ago and was diagnosed with Fibro years before that. I can relate to all of these comments. I’m now wondering if I have MS as well.
    Thank you so much for this post, helps to know you are not alone

  • Carol Gentry says:

    Everyday is something different. Headaches, facial pain, ear pain. Today is eye pain and burning feet and a numb leg up to my hip..It is another MS day. Did I mention that I’ve just had 4 days where I couldn’t do anything except lay on the bed or couch. I’ve been diagnosed 4 years ago with MS but probably had it for about 16 years. I’m trying to be positive about life but it’s really hard…

  • Jen says:

    You have progressive MS and everyone tries to compare you to the lovely lady they know who has lived with Relapsing MS for years and not been as bad off as you….. or you get so tired of explaining the difference that you feel like printing up cards that say, ‘I have MS. You have questions about it. Oh look…. you can Google it!’

  • Patha says:

    you can’t tell if you’re holding onto something or not. “Wait, have I got the eraser??”

  • Patha says:

    Love this article…. I can relate to SO much of it! I was diagnosed 21 years ago and feel like the luckiest person on earth that, thank God, I’m still walking and playing with my child and finishing my MA… but I relate to a good percentage of what’s in here! I’m not as quick as I was, can’t drive freeways anymore, get exhausted SO quickly, lose balance without warning… Hate , and have always hated, heat!!!! Been through the ringer with optic neuritis, tinnitus, diplopia… 5 months after my child was born, I was crawling across the room. So grateful that I’m in the “remit” portion of this deal. Blessings out to everyone who is on this journey. Glad I’m not alone.

  • Corinna says:

    You know I have a lot of symptoms my feet feel like they’re tingling and frost bed my legs hurt I can’t sometimes keep my balance my hands go numb I thought it was carpal tunnel my eyes hurt I have neck pain I’m in I will have a lot of issues and I wonder what I have but no one ever gives me a diagnosis

    • Angel says:

      Thank you for reaching out, Corinna. I’m sorry to hear of the symptom challenges you are experiencing. If you have concerns that the symptoms you’re having could be related to MS, the specialist to see would be a neurologist, but you can also begin the conversation with your primary care doctor as well. The MS diagnosing process can be somewhat challenging, as there are different tests and methods used to try and diagnose the disease. For some more information on how MS is diagnosed, you can find this on the MSAA website here, https://mymsaa.org/ms-information/overview/diagnosing-evaluating/. Hopefully by working with your doctor and perhaps a neurology specialist they can help determine the cause of your symptoms and provide more answers soon. Please feel free to reach out to the MSAA Helpline for information or resources if needed, phone (800) 532-7667, ext. 154. Take care and best of luck to you.

  • Zen says:

    You know you have MS when you think about each step before you take it.

  • Amanda says:

    This list gives many good (is that even a “good” way to call them?) exAmples. It left out feeling nauseous and dizzy from walking too quickly or riding in a car. How about when you cannot remember your loved ones names? Or, nit just seeming intoxicated, but feeling like it, too, and questioning yourself if you forgot having a drink? Trying to decide if you are rightfully anxious/depressed or if this is another symptom of another lesion. Not being sure if you should go to the dr or not, and then getting there and being asked why you didnt come sooner…umm, because i spent a week trying to decide if this was actually serious or not.

  • Susan says:

    February 24th 2018 everything I just read fits me to a tee all of it in to add I have a noise disability have a lesion coming from my brain stem to my audio I’ve read that other MSers have this disability also 20% of us any tips of how they can handle all this fortunately to add to all my situation my husband has a cancerous brain tumor ugly and what stage 3 between the two of us were having a very difficult time thank you for listening

  • Susan says:

    It’s supposed to say cancerous brain tumor glioma stage 3

  • Mary says:

    Hello gang,I’m gonna join the conversation. I was diagnosed with MS in 2008. It started with tingling in my feet while walking. And when sitting if I bent my head down I would get that electric shock down my spine & body.
    Then things got really bizarre! I was a sales person for a newspaper. A couple of times I would be walking to visit with a customer and all of a sudden a strange feeling would come over me. And, I would stop in my tracks so I wouldn’t fall. If I was at home and it happened I would just sit down. At this point I went back to my Neurologist & other doctors. I always described that if I didn’t know better I would think I was having a stroke. Little did I know how right I was! So my neuro sent me for new MRI’s and he said it’s just your MS acting up. So turns out he was wrong. I was having mini strokes (tia’s) the radiologist that sent him a report that said he favored tia disease over MS. Apparently my neuro dismissed the lowly radiologist and it almost cost me my life! I should have sued that bastard! Well he got a freebie on this case. Long story short he put me on a steroid drip to help with my “exacerbation” NOT! And, during the process my little boy was sitting with me and I started to feel real weird cause I was having a full blown stroke! So I said to my little guy go get dad. He couldn’t understand me but ran upstairs to get his dad anyway. I must have scared him half to death! So my hubby came down stairs. I motioned to him that I wanted to get up. Keep in mind he doesn’t know whats going on at this point. So I collapsed! He caught me and then called 911. Next thing I know I’m whisked off to the hospital. He can’t ride with me because of our son. So he drops him off at my sisters house and meets me at the hospital. So after so much to do, the ER doctor says to us you’re not gonna get another MRI just because you came in the ambulance you know that right? And, we said how about I can’t stand or walk nor use my left arm! See before I arrived my husband told the EMT’ S who my neuro was and they passed that on to the hospital staff. So the ER staff called him and said it looks like your patient had a stroke and he (bastard) said no stroke she has MS! Well needless to say I stayed in the hospital overnight and I had another stroke overnight! So the next day a sweet lil nurse was prepping me for an MRI cause my sister had come up by then and told them all about me and the nurses agreed I should have an MRI. So one of them or more convinced the doctor I should have one. So during the procedure I had another stroke and wound up vomiting on myself. And I can still remember that sweet little nurse washing it out of my hair! So my hubby & sister decided not to leave at the rodeo I was currently languishing in and arranged to have me taken up to HUP! (Hospital at the university of Pennsylvania) where I got an immediate diagnosis! Moya Moya! Yes, I know, what the fudge is that? Not an exotic drink nor some fancy weed to smoke. But a rare disease! More later folks, my poor hand is getting too tired to continue right now, you see MS will do that to you! That’s assuming anyone wants to Here anymore!

    • Angel says:

      Hi Mary, thank you so much for reaching out to the MSAA. I wanted to let you know that in addition to our MS Conversations blog we also have an online peer support forum called My MSAA Community where you can communicate with others living with MS too, https://healthunlocked.com/mymsaa. Feel free to take a look at this community if you’d like to reach out to others to share your experience. Thank you again for reaching out and take care. Angel, MSAA Client Services Specialist

  • Theresa Foss says:

    I am having my second treatment this month.
    I don’t understand why more people are using Ocrevus.
    I like talking to others.

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