It’s true, Multiple Sclerosis is painful

Living in a constant state of pain is grueling, exhausting and tough…really tough. Someone who hasn’t been in that position will never grasp how difficult it actually is to function during a time of blinding pain, no matter how much you try to explain it to them. There is just no way to put that kind of thing into words.

When pain becomes that overwhelming, you find yourself creating your own methods of mind over matter to try and cope. Sometimes they work, but sometimes the pain becomes so intense that you can’t seem to find any coping mechanism to bring relief. That’s when the tears flow, the mood swings happen and you pray with all the strength you have left inside of you hoping that everything will simply stop spinning out of control.

That has been my world these past few days. The pain has been so intense that I found myself hibernating…more for my own sanity than anything else. I know my fuse can be short when my body is screaming at me with that much intensity. I wouldn’t want anyone to be on the receiving end of a faulty mood swing during an I’m-trying-to-cope moment in my life.

Now don’t get me wrong, I truly am a wonderful, nice, calm person…but when I’m hit with excruciating pain that just won’t let up or stop, the monster hidden deep inside of me rises up. I would never be cruel, but I am more apt to say something that might hurt someone’s feelings. And I wouldn’t want to do that.

Anyone who says that people living with Multiple Sclerosis don’t experience pain, is full of it. Oh, how I would love to give that person a glimpse into just how painful it can be.

But you know, although the pain is horribly unbearable, I find that somehow the strength I need to push through during those times comes. I eventually get through it and I gain deeper compassion for others facing similar times of pain in the process.

Before MS, I really didn’t get it. Life wasn’t as meaningful or as precious to me as it is now. I took way too many things for granted: people, a good job, strong friendships, laughter, and the freedom to do just about anything I wanted to do.

Now, because of Multiple Sclerosis, I live my life in a constant state of uncertainty and pain. Physical pain and emotional pain. Yet now I find myself savoring every memory and moment I have…even the painful ones. I no longer take life for granted. I value each day, each sunrise, each raindrop, each tear.

There’s no time for petty arguments or silly whining. There’s no point in trying to one up someone just to make myself feel important. There’s no need for meaningless relationships or power struggles. Each moment I’m given, each person I meet, they’re a gift I’ve been given and something I shouldn’t waste or toss aside.

Savor life. Enjoy every moment. Live today regardless of how terribly tough it may be. You are here, alive, for a reason. You matter. You have a purpose. You are loved, valuable and someone that I’m thankful to call friend.

You are a survivor and a warrior. You are truly an amazing person. Never forget that, even in the pain.

MS Gets on My NervesMS WarriorMS Superhero  


About the Author
About the Author
Penelope Conway

Penelope Conway
Penelope started Positive Living with MS as a way to help others with MS stay positive in the midst of a terrible disease. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day. Multiple Sclerosis may never go away, but neither will her determination and her drive to help others through the journey.

87 replies
  1. JORGE CASTILLO
    JORGE CASTILLO says:

    Thank you for sharing, sounds challenging, I’ve had my share of pain too. In retrospect, we develop tolerance, coping ability, luck and or as it appeared it dissipates. I suggest: keep trying, stay positive, keep finding and reinventing meaning in your life. At some point healing will have occurred. It’s like someone said, ” Listen with an open mind and be prepared to be amazed or find your answer.” Wishing you wellness!

  2. Esme Waldron-Bates says:

    I had a private dentist do me a filing. That part of my mouth feels great. Made me realise how much the rest of my mouth aches and booked to see him again. Similar with my bladder. Had an operation and many of my problems went away. If only are individual issues are taken case by case instead of it being dismissed as “it’s your MS”. You are so right Penny I yearn for the days I did what I wanted, when I wanted with who I wanted. It is a different reality now the MS. You value the small stuff.

  3. Shanice Chapman says:

    I can’t remember the last time ‘Positive Living’ posted something positive! I’m 23 and have had MS for 5 years now and I love my life! Yes sometimes it’s hard but who isn’t dealing with something in this world? Just carry on and stay happy and positive that’s the only way to beat this, and even if you can’t beat it just let it become a part of you, those who don’t get it don’t get you so leave them it’s quite simple you don’t need them anyways

  4. Ashley Cotie Cotton says:

    This is the best article for MS I have ever read!! If you have MS don’t ever let a doctor say pain is not a real symptom with MS, because it is, I know first hand!!! I have lived with pain for 18years now.

  5. Diane Paterson says:

    My daughter is pain most days she tries to keep positive coss she feels nobody understands her but pain with ms is real she has her good and bad days and is bed ridden sometimes but shes a fighter and tries to stay on top.shes had MS for over 15 years.she has brought up 3 kids and with a devoted husband has lived her life the best way she can .shes not gonna let this disease win!!

  6. Rodger Ashton-Smith
    Rodger Ashton-Smith says:

    I’m sorry you have a lot of unnecessary pain from the monster. I have had a spastic bits of pain but nothing like the cellulitis I got from Betaferon injections. I ha four years of four different areas an the last one almost killed ma I was on so much painkillers that I didn’t move for three days and went from a light 65kgs to 40kgs. I was told if it ha lasted four days I would have been dead. Thankfully it took three days and I felt like shi. However I survived and put the weight back on. That was seven years ago and I have never forgotten it.
    I do know what obtuse and acute pain is like as my wife gets that from surgical problems and other ‘things’ and I have liked with that since 1987 so it’s not new to me.
    I do hope for you that you have a helpful gp and from what you say a good brother.

  7. Odette van Straalen says:

    I’m sitting in my bed crying with the pain, wondering how I’m gonna get through the day. The pain pills are not even touching it. I’ve had three Neurologists over the years that all said MS doesn’t bring pain and the explosions in my head? Must be migraines. I’ve never had a migraine in my life. Well, except maybe for the 10 day headache my first spinal tap brought on. We should be actors, if only we had the energy. Nobody will see my pain today. I’ll make sure of that. And I’ll probably cry a few more times today but nobody will see that either.
    Thankyou Penelope for providing a place and understanding for us all..x

  8. Debbie Ford says:

    Hang in there Penelope!! It bothers me when I try to explain the pain. People look at me like I’m crazy. I have pain in my legs most days. Sometimes it is just aggravating pain. But other days it is all I can do to keep from crying. I try my best to fight through it. We are fighters in ways many will never understand!!

  9. Shelley Hague says:

    Luckily I don’t suffer to much from pain and wen I was first diagnosed it was the emotional pain I suffered from I have managed to get my head around that and now just feelin happy that my MS is at bay and want to cherish my family and close friends and get on in life❤️

  10. Kimberly Carroll says:

    I would like you to know that your humor and outlook on life has been so helpful to me these past few weeks/months. I have been feeling so helpless and worthless. Being able to come to your page and read your comical quips and, more importantly, your positive take on this thing called MS, helps me to remember the blessings in life, and they are truly blessings. I thank you for that!! Keep up the good work and the best of life to you! <3

  11. Jacqui Burns says:

    I read this and my eyes leaked a little because I’m sat here having one of my ‘trying-to-cope- moments’ where I’m exhausted but then trying to take my mind off things and clock watching til I can take my next lot of medication. This link is spot on; and when I read it, I don’t feel so alone. Every day and every moment I am here is cherished…painful or not!

  12. Jason Rogowski
    Jason Rogowski says:

    My knees hurt so bad.
    And day and night they are vibrating and burning,yet my gp tells me it’s only minor arthritis, (well doesn’t seem minor to me)

    • Leslie Fulghum Carrasco says:

      Just saw MS specialist for the first time (just recently diagnosed) & she wanted to know why I walk the way I do. I really took offense to that question and especially the smirk in her voice, questioning what I feel when I’m walking– but, upon physical evaluation, I still have strength. It does give me a little reassurance/relief to know I’m not the only one.

  13. Deborah Cogan says:

    A GP I saw less than six months ago…actually sent me for xray of my shoulders because that’s where my pain was but she insisted that pain isn’t a feature with MS…..needless to say the xrays were normal…and my neurologist was not impressed….I went on to have a 10 week relapse…..

    • Toni Muetzel Johnson says:

      I don’t often see one of us saying their pain is in their shoulders. I have fibromyalgia also. Last visit to my neurologist, I was told I have more issues with the fibromyalgia than the MS. Then there’s the headaches…all the way to stabbing head pain and toothaches! It’s impossible to explain this to anyone and get any understanding.

      • Tina Supplee
        Tina Supplee says:

        I too get the toothaches! in fact the first symptom I had (and continue to experience) was what I thought was an abscess – but it wasn’t… drives me crazy and makes me want to cut my head off at times.

      • Ashley
        Ashley says:

        I have had relapsing remitting MS for 18 years found out at 27. It all started with the most horrible headache you could ever imagine. I have had several ER doctors and GPs tell me that you don’t have pain with MS. Until they live in my shoes please don’t judge and make people with MS feel like they are imagining the pain!!! The pain is real…

      • Claudia Joos
        Claudia Joos says:

        I have had trigeminus neuralgie for almost one year. I can feel all your pain and your hopelessness!t’s a awful fact and to have pain at the head or in the mouth is the worst! I have no solution for all this…I have MS 30 Years now and …. I can’t remember how it feels without!! I try to be patient all the time and when the pain is getting too hard I take painkillers…. ! Do you want that the pain drive you nuts?! I hope you understand my English! I am from Germany so…

    • Deborah Cogan says:

      My issues with my MS started with headaches, neck, shoulder and arm pain…
      I get altered sensation in my arms and hands and of course pins and needles…
      I experience MS hugs too…tho mine last for hours rather than days…thank god!
      I now also have altered sensation in my legs and pins and needles in my feet…
      And I have a permanent low grade headache, which I’ve just learned to live with…

  14. Tammy Reehl says:

    How true, this message is. I continue to press into Jesus Christ my Lord..He is the only one that can comfort me and give me strength. There are those that don’t understand when I say I am In so much pain, I just have to lay down and be alone to rest. I am thankful that my Jesus knows and will never leave me! Luv to all MS sisters! ❤

  15. Theresa Chapman says:

    I have pain all the time in my back & hips but keep being told its not MS :/ if its not MS what is it then 🙁 ,but WE carry on like we do cus we have too <3 xx

    • Catherine Stamp Keenan says:

      I have chronic back pain but always been dismissed because I have slipped discs but the top of my back aches too & also my hips are so stiff & burn too. I think it is related to MS. But we carry on regardless. ☺ xx

  16. Linnie Barnard Naude says:

    sometimes I wonder …Is it MS that cause the pain…or is there somethingelse wrong….I hate these words…You look so beautiful…how can you say you are sick…and in the meantime my whole body hurts….I hate these fattique and nausiest feeling…So totally drain of any strenght…Tried…but I did nothing…Breasthless but i didnt walk anywhere….!!!!

    • Carla L Broadbent Rogers
      Carla L Broadbent Rogers says:

      Linnie, good morning. The words “you do not look sick” makes me want to slap them. Depends on the person and my mood, my come back “Well, you do not look stupid. have a nice day” We Ms’ser have a different kind of strength and power that the outsiders will never understand. And sometimes “we” do not understand. Stay strong and true to yourself….We got your six. Be well.

    • Row
      Row says:

      I haven’t ‘officially’ been diagnosed yet, (waiting to see neurologist after mri showed lesions consistent with MS) Is nausea a symptom too? I have had years of feeling nauseous on & off for no apparent reason, hadn’t even considered the connection…

  17. Leah
    Leah says:

    Penelope, I feel sad to hear that you’ve been going through so much pain lately. Fortunately, my level of MS (R/R) that I’ve endured for the past 16 years is a feeling of achiness, stiffness, and discomfort…you’re right, I don’t really know what real pain feels like as of yet. Hope I never do. All I can say to you is to rest, meditate…if you do such a thing…I find it helps to put me in a state of relaxation, and take a break from blogging and just focus on “you”. I’m sure your readers, who are also living with this chronic illness, will understand. My thoughts are with you and pray you’ll feel better tomorrow.:))

  18. Marianne Wallace says:

    I’ve had m.s for nearly 30yrs now and I’ve always suffered pain. Sometimes excruciating nerve pain. People don’t ‘get’ how you can complain of numbness which is painful?? Doesn’t make sense but … as many of us know … it can be all consuming !!

    • Beth Bayless Scholtz says:

      I once told a neurologist I was seeing for my MS that I had both pain and numbness in my legs. He replied, in a quite irritated tone ” you CAN’T have both! ( as if I was either lying or an idiot.) needless to say, I don’t see him anymore.

    • Kelly Simpson says:

      My daughter experiences the same thing. I’m grateful (as weird as it sounds) to have been sick first (leukemia). It enabled me to KNOW that you can look perfectly fine and at the same time endure chronic pain. If I hadn’t experienced it myself, I would have thought it was an excuse for laziness. That’s how I looked at myself prior to diagnosis, why am I so lazy? Overwhelming fatigue will do that to you.

  19. Judy Alonso says:

    Sad but true for so many! I am blessed with family and friends that do “get it” and understand when I am having a bad day and just have my zip! Love all of you!

    • Stuart Goldberg says:

      So true. MS can be a disease of isolation. Fortunately my dearest friends seem to get it because without their love and support life with this chronic illness would be unimaginably horrific. This disease has helped me redefine friendship and support.

    • Amber Gower says:

      You’re blessed! I have lost many of my “friends” because I don’t communicate like I used to or I don’t remember some plans or I’m different and they don’t get it and don’t want to try to get it 🙁

  20. Kate Curran says:

    I’m actually laying in a hospital bed atm because I’m having a 3 day steroid infusion and since I’m out in the boondocks country my Dr keeps me in “to be on the safe side”. Which is great because he is a fantastic Dr who does care and treats me as a person not a number with MS but I hate I suppose not being in charge of my own pain …. At home I have a routine, I walk a certain way around the house then do stretching which I don’t even know if they help then I walk past the fridge 10 times and stand there looking for nothing in particular but just distracting myself until my next lot of painkillers are due but here in hospital they expect me to stay in be and rest. HA!!!!!!! Yeah MS pain sucks but we deal with it and find ways through then smile the next day because it’s the next day and hey there might be something different in the fridge tonight

  21. Donna Philmus Breitowich says:

    I have gotten good at masking my reaction to the electric shocks that shoot from my brain down my right side. This way no one has to be “uncomfortable” around me. And they wonder why I have memory lapses or lose focus during conversations. If this was happening to them, their lives would stop in its tracks.

  22. Silvia Perez Arvelo says:

    Thank you for being the voice to this terrible illness. My husband has been battling MS for about 30 years and reading your posts has allowed me to see closer into what he experiences daily. Thank you!

    • Leslie Brucks
      Leslie Brucks says:

      Godspeed.. Thanks for caring enough to read and continue trying to understand. I think the worst part about living with chronic illness is the indifference from the ones who profess to love me. This isn’t bitterness talking. It’s the unvarnished truth.

  23. Jayne Payne says:

    we are fighters and are strong , the very thought that I will probably never be free of pain ever again is almost crippling sometimes , but I carry on , we all have to carry on and get tougher x

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