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.

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

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.

109 replies
  1. Patty Solis
    Patty Solis says:

    I have chronic pain on my left side. I have to rotate the methods I use to calm it because it seems I “adapt” to a certain method and it no longer helps. The emotional pain is sometimes worse than the physical pain. I am grateful but I am so numb in someways it is difficult to rejoice. I think that it is partially because I always have my “fake” face/mask on. I hide so much that I don’t know who “I” am anymore

  2. clive smith
    clive smith says:

    Was diagnosed with PPMS at the age of 67yrs my main problem are my legs,after been on them for 1/2 to 3/4 of an hour,if I could,nt find somewhere to sit I would collapse ,can,t say its agony,like a terrible ache and lose my strength. I do have other problems bladder + bowel but am managing. Get a very tight feeling round my wrists, I dread getting up in the mornings but when I,m up and about I feel a bit better.

  3. Joyce Steiner
    Joyce Steiner says:

    I’m one who has MS for 40+ years, but never had pain with it.. have had temporary paralysis, crazy vision and numbness, but never pain.. so there are different types.. the exhaustion just comes over me like a train.. all of a sudden I have to go lie down..

  4. Cassie Willis McChesney
    Cassie Willis McChesney says:

    I have stop seeing neurologists because I have been called a liar as to what my symptoms are (ms doesn’t cause pain ) and they always try to force their drugs on me. I’m not paying over $4000 a month to be sick the rest of my life. I’ll stick with my plexus which makes me feel partially normal and I have fewer symptoms then when I was taking their crap.

  5. Jane Holmes
    Jane Holmes says:

    I have been going to the physiotherapist with numbness and pain in my right hand. Didn’t blame it on my MS but maybe that is the answer. Grrrr

  6. Judy Puckett Winkle
    Judy Puckett Winkle says:

    My son was diagnosed with RRMS, 19 years ago, he is numb and says he is never in pain, unless he falls down and hurts himself doing so. He still has plenty of things to deal with so I am just thankful he doesn’t have persistent pain!

  7. Rodger Ashton-Smith
    Rodger Ashton-Smith says:

    Thank you Penelope for the small glimpse into the days with pain. I am so lucky that I have very little pain with MS but I have found a new torture that came from a problem with MS
    You give a person bladder retention so you can’t pee very much
    Then give them a UTI.
    Make it urgent to take a pee that is extreme painful every time they try and pee.
    Do this over an evening and morning and see the result
    This has happened to me and gave me an insight of what it really feels like to be in pain. I was fortunate that I got help in the afternoon and had no secrets to reveal, but it was still painful and stopped me doing very much just trying to live with it. I don’t want to ever go back to that place and I’m trying to eliminate any way of that happening again.

    • Jade McLeod
      Jade McLeod says:

      It is possible for some people….but as Samantha stated, every case is different. There is also new research to suggest that MS may actually be an entire cluster of diseases that coincide. Due to differences in symptoms, everyone is going to have a different experience. I am sorry your father had MS. Even if it wasn’t painful, it had to have been a hindrance.

    • Sue
      Sue says:

      Hello Marybeth,
      I have a torn rotator cuff and ruptured tendon in my left arm. This began in 1984 and that is when the pain began. It is severe pain, numbness and spams all in one place. I have pain throughout my entire body. I seriously wonder how long a person can live in this much pain. 🙁 again.


  8. Shanna Kinser
    Shanna Kinser says:

    I have MS and fibromyalgia. Even some of the health care providers have questioned the pain I’m in daily. Like MS itself, the pain has gotten progressively worse. Blinding pain is a good way to describe it. Thank goodness I have a great pain management doctor, who knows that I can’t function without proper management. When we say we are in serious pain, just take us at our word and be very grateful it’s not you. That includes people with MS who are spared chronic pain. For now.

  9. jjudy
    jjudy says:

    Of course there is pain with M.S. Wish the best to everyone. There are other diseases that have pain like arthritis & fibromyalgia, which I have both. Have had both for over 30 yrs. It also is chronic. Just have to keep going and think positive. My son has had M.S. for 32 yrs. so know just what you are talking about. He was 19 when it began & now is 51. He thinks positive & doesn’t dwell on it which helps him.

  10. Willeke Van Eeckhoutte
    Willeke Van Eeckhoutte says:

    Penelope, I’m so sorry to hear you’ve been in such horrendous pain the last few days. Unless it is literally written on your face people don’t realize how bad it can get. Just know that there are a lot of people who do understand and who you can use as a sounding board. Rest as much as you can and hopefully you’ll feel somewhat better soon.


  11. Nancy Pierce
    Nancy Pierce says:

    You and me both, sometimes you just want to crawl into a hole and let someone throw the dirt over you. IF you know what I mean. But you still push through and do what you have to do to get by.

  12. Heidi Sheard
    Heidi Sheard says:

    Likewise. I’m the only female in a house of five and sometimes I secretly wish they could feel my pain for 24hrs. Just so they could understand. I try to explain it’s like arthritis…EVERYWHERE. Sending everyone strength today. ❤

  13. Yvonne Kennedy Roache
    Yvonne Kennedy Roache says:

    Thanks for posting this, I think because people don’t see your pain it’s hard to understand or appreciate the constant companion that neuropathic is ! Would love to have even just one day pain free

    • Sue
      Sue says:

      I understand if that means anything at all. My pain began in 1984. Had they told me I’d be where I am today, I think I’d have thrown in the towel years ago. The pain worsens as the disease progresses. My pain is of spinal cord etiology (fancy words for lesions in the spine). The War on Drugs is making life for those with CIP (chronic intractable pain) a living hell!

  14. Leah
    Leah says:

    After reading your blog this morning, I hope today will be a better day for you Penelope. Quite frankly, my body is constantly in discomfort…maybe it’s pain. I really can’t decipher what I should call it. What I do realize, is that I’ve become so used to these bodily sensations that it’s just a way of life for me. Glum…I know:(

    • Chris Svab
      Chris Svab says:

      Although not excruciating I am in pain 24/7, always have to adjust how I sit, lay, move etc. plays on your mind and hard to ignore.

  15. Wendy Cameron
    Wendy Cameron says:

    I see the unspoken effects of ms on a very brave young man ,as if the pain wasn’t enough there are many side effects they quietly bear , with very little understanding by the onlooker ….

  16. Marcie Schonborn
    Marcie Schonborn says:

    Thank you. Just sent this to my husband. I’ve become a b**** lately, lost my joy. The pain has overcome my being at times but the nausea has been worse. I have to believe and I do when I read these words that I’ll come back for real. Warriors are we one and all.

  17. Sarah Marie
    Sarah Marie says:

    Thanks for sharing! I know people think I have excuses or I’m full of it… starting to not care (just diagnosed tho showed Signs at 16 now I’m 39) pain everyday and it’s just become my new reality till God heals me and I’m praying and clinging to healing one day

    • Sue
      Sue says:

      to Sarah Marie:
      Looking back, that is when my pain began (age 16). I recall cutting out patterns as we used to sew in my day to pass time and make new clothes for ourselves. I remember it being painful to get up and down and painful to pin and cut things out. That was just the beginning sadly.
      I look at where I am today with the pain and wow, what a crummy life it is. I wake up in pain and go to in between. Sad reality it is and lack of $ sure does not help either — just makes it all that much more difficult and oh yeah, I look fine btw, just FINE! *argh*

  18. Amber
    Amber says:

    I’ve been told ms doesn’t cause pain by a doctor. I was thinking to myself. Thank God you’re not my neurologist.

    • Linda Horrobin
      Linda Horrobin says:

      I don’t think they don’t care, I think they just don’t know what they can do.
      I tell people I’m with I’m hurting when I am, just so they know I’m being distracted by it. I know they can’t change the pain I’m feeling or do anything about it but I do know they care. Take care, xx

      • Sue
        Sue says:

        Do not accept this as a fact — that they cannot do anything about it. That is a lie! They can RX some pain medication for YOU. If you can manage to stay out of a wheelchair because your pain is being managed, then yes, there is something that can be done for you! If they refuse to manage YOUR pain, seek care elsewhere is my advice to you. Shame on them, shame on all medical professionals that don’t view chronic pain as being “real”. It is very real!

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