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Pain Changes You

Editor’s note: Chronic pain can be one the most debilitating effects of MS. If you or someone you know is struggling, please know that there are many resources available for support including the National Suicide Prevention Lifeline (1-800-273-8255) and online chat, and the MSAA toll-free helpline (800-532-7667, extension 154) and online chat.

When I was first diagnosed with Multiple Sclerosis nearly two decades ago, I thought I knew a good bit about the disease and what it was capable of (I’d grown up with a grandfather who also suffered with the disease, so was more knowledgeable than most). Of the many varied potential symptoms that I knew were possible, one of the ones that I didn’t expect was pain. At the time, I’m pretty sure it wasn’t even considered a symptom of the disease. Science and medicine have now advanced enough to know what many people with the disease have long told them, that pain is a significant issue with MS. I’ve discussed pain in MS on many occasions; it’s a symptom that I deal with, to some extent, every single day. This article isn’t to cover all the specific types of pain or their causes, rather, this is about what living with chronic pain every day does to you (to me anyway). In short, pain changes you.

Burning leg pain and muscle spasms and tightness

Much of my pain is typically of a burning nerve variety, particularly in, but not limited to, my legs. Many days, it feels like my legs are on fire from the inside out. This sensation can last the entire day or it could come in spurts. Severity also varies; sometimes it seems unbearable, others, it is a thorn in my side annoyance that is just enough to allow me to never quite get comfortable. In addition to this fiery pain, I get spasms and tightness throughout my body. Not everyone may associate those sensations with pain. However, having muscles that expand and contract without you being able to control it is indeed painful. Think of a bad cramp or “charley horse”, that’s what I’m talking about. While burning and spasm/tightness pains are the worst for me, I tend to always have a variety of other indirect sources, too. I fall now and again, leading to a lot of hurt knees and rug burn. My coordination isn’t great, so I bang into a lot of things. This stuff seems minor, but it adds up and it’s consistent (I’ve written an entire article about wondering where all the bruises come from).

Yes, I’ve tried many things to manage my pain

This paragraph is here to tell you that I have explored options. I’ve tried many things. For me, gabapentin was like taking a sugar pill and marijuana is somewhat effective but expensive and hard to acquire. I currently utilize a combo of CBD oil and Cymbalta and still have pain, but not nearly as bad and debilitating as it was prior to that combo or when I weaned off of those two just to prove to myself that they were doing something. I’ve tried a whole lot more than that, too, so no need to suggest anything. And while taboo to admit it, yes, I’ll occasionally have a few drinks to help, and it does.

Effects of pain on my mood and relationships

It’s hard to say how I’ve changed from being in pain so much for so long. It’s been a gradual evolution of pain for me, which really didn’t start until I was maybe 13 or so years into the disease. It’s so difficult to understand how it’s changed me, not only because of the gradual but steady onslaught, but because it affects everything. Pain like this is so hard to get away from, getting good sleep is tough due to painsomnia, even relaxing on the couch can be difficult. It feels like my body is constantly under attack. Being in pain all of the time can have a massive effect on your mood. I’ve mentioned before how I can come off as angry or “short” with people, even when I’m not. It is no doubt a source of depression as well. Pain has even caused me to self harm. I’ve had moments when, even as a 40-plus-year-old man, it’s caused me to break down and cry uncontrollably. It’s led to problems with my friends, family, and many relationships. I have no doubt that being in pain every day has made me different than if I didn’t have it. It absolutely makes it hard to enjoy life and, on more than one occasion, had me questioning if I want to keep on going.

The cumulative effects of pain

All of this has had a cumulative effect on me that makes me sure that I’ve changed. I walk around feeling beat up. That said, it’s also made a lot of other issues in life seem not so bad, so I guess that’s a plus, right? Pain has helped me enjoy the little things more, I suppose that’s good. While there are many tough moments that my body has adapted to, it’s also adapted to be more appreciative of the smaller things in life (see, there is a positive in everything). While I may not know exactly how different I am because of chronic pain, I know enough to know that is has changed me. While it doesn’t affect everyone, pain can be a serious issue with MS. It’s an invisible symptom that can wreak havoc on your life and it shouldn’t be underestimated.

Thanks so much for reading and always feel free to share!

Devin

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Comments

  • vcoll in ns01
    2 months ago

    The hardest part of dealing with my pain is trying to get my family to understand that I can’t function without pain management. I have secondary progressive MS , fibromyalgia, degenerative disc disease and last but not least a surgeon nicked my spinal cord during a cervical surgery we hitch that in itself causes pain for the rest of my life. It used to have lots if friends but have slowly lost almost all but a few. Even those friends I sometimes feel like a pain when I ask for help. I recently had a spinal cord stimulator implant and am praying that will help decrease my pain level. My biggest challenge is I’m moving to Albuquerque to be close to family but I’m too weak to pack so I don’t know what I am going to do. My daughter has only enough vacation to come move me. I have to have the packing done before she gets here. Does anyone have suggestions of groups I might contact to help me get packed?

  • Devin Garlit moderator author
    2 months ago

    Thank you @vcoll in ns01, unless they’ve experienced it, it’s very hard for others to truly understand what chronic pain can do for you. As for helping get packed up, it might be worth contacting your local MS Society chapter (https://www.nationalmssociety.org/Chapters), they may be able to help you find someone or at least a discount in some help.

  • vvxjr9
    2 months ago

    Lupe – I think every doctor’s office I go to one of the first things they ask is what is my level of pain now? My, that changes many times during a day. My mind is scrambled because I am in a doctor’s office and I am supposed to be honest about my pain level?

  • Lupe
    2 months ago

    One of the worst things for me is when I am asked what “level” of pain I feel. Well it depends on the day, the weather, hell, even the time of day! I cannot pinpoint exactly the level of pain I feel, I just know that it definitely is no less than 2 on a good day and nothing seems to help it, especially when it is severe. Another thing is that I cannot say specifically where it hurts. Seems like the pain is everywhere!

    Thanks for sharing and listening to our gripes. Hope you’re not feeling too bad today.

  • Devin Garlit moderator author
    2 months ago

    Thank you @Lupe and @vvxjr9, the level of pain question is tricky for a lot of us. Not to mention how much it fluctuates! I’ve been asked while in the office what my pain level is, OK, it’s a 6 right now, but two hours ago it was a 9.5. Pain is extremely hard to explain to people.

  • Yoshitail9
    3 months ago

    Hey Devin
    Know exactly what you mean. Been dealing with this for 40 years. Have had that burning sensation 24/7 365 days per year since my diagnosis. You know how long it has taken doctors to finally admit that MS can cause pain, so for the longest time it was not recognized. How can my feet feel like they are on fire but feel cold at the same time. Crazy!
    Patience at times is not one of my greatest virtues so sometimes I just want to blurt out to people that old saying “Walk a mile in my shoes”. Keep up the good work and NO MORE talking about not wanting to be around.

  • Devin Garlit moderator author
    2 months ago

    Thanks so much @Yoshitail9! Sorry to hear that you too know what this kind of pain is like. Like you, I remember when no doctor thought pain was a symptom. We’re getting there, but there are still a lot of doctors out there that aren’t up to speed on the matter.

  • Turnippatti
    3 months ago

    I really enjoyed your article. I have been loosing momentum since before last Christmas . My pain dr is going to try an epidural in my spine. My neurologist is very pleased but I don’t know more does my pain dr know how it will be .

  • Devin Garlit moderator author
    2 months ago

    Thank you @Turnippatti, please let us know if the epidural is helpful. I haven’t heard of too many people with MS taking that approach, so I am very curious.

  • asapcynthia
    3 months ago

    Good article as always, Devin. It stinks when you really don’t what’s causing it. Years of steroids, bad posture and a spine twisted because of uneven muscle tone from spasticity. My discs are dried out so I have DDD, which causes bone on bone. You go the pain management route, and told it’s related to the ms so that’s who you need to talk to. When I ask them about my severe spinal stenosis, and how if my L5S1 is truly misaligned by a 11mm offset, wouldn’t that hurt? How come I can even walk? So I bring my Xrays and MRI to the MS Clinic who say well this is ortho in nature so I boomerang back and fourth and I had consult with a spine surgeon who couldn’t even bother to come in the room. He actually stood in the doorway and said well you has ms which predicts a poor prognosis. He was very lucky I was in a good mood that day, because if I could have moved fast enough I would have slapped him right across the room. I just said you know, my issues are real if you bothered to look at results you would know that, and besides I’m old enough to be your mother and you should really treat a person with more respect. I used to have a really long fuse, but it got shorter between this bs and ms, so on a bad day pop goes the patient!

  • Devin Garlit moderator author
    3 months ago

    Thank you @asapcynthia, that doctor sounds horrible!

  • jmetni
    3 months ago

    I’m sorry you’re experiencing this. I’ve had MS for eleven years now and have had lots of pain in the last few years, it drives me crazy. How do you tell your support system how bad it is? I find myself also getting short sometimes and not having the patience or words to articulate the experience.

  • Devin Garlit moderator author
    3 months ago

    Thank you @jmetni, it’s hard for people to understand, unless they’ve experienced it. I too have been very short with people because I’ve been in pain. I just hope they read articles like this one that hopefully help they understand it just a little bit better.

  • sunEz
    3 months ago

    My daughter has had chronic pain for 4 1/2 years now. It’s all day every day, all over her body. We have tried so many things but nothing eases her pain. She just turned 28 yesterday and was diagnosed at 22. It is so difficult to watch someone you love hurt so much. She doesn’t have the strength to join any social groups or date. Chronic pain sucks the life right out of you.

  • Devin Garlit moderator author
    3 months ago

    I’m so sorry to hear that @sunEz, I hope you can convey to her that, at the very least, there are others who experience it as well, others that understand. Sometimes knowing we aren’t alone can be extremely helpful.

  • georgi54
    3 months ago

    This was a great article because I feel exactly the same. My husband read it and said it could have been written by me! Pain really does change you and some days there really is no where to go to escape it. Exercise used to make me feel better but now I can hardly do it. But I hang in there because of the good things in my life. Thanks for sharing, it means a lot to me.

  • Devin Garlit moderator author
    3 months ago

    Thanks so much @georgi54, really appreciate you taking the time to comment.

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