Need to Know: How to Manage MS Pain

Need to Know: How to Manage MS Pain

Editor’s note: “Need to Know” is a series inspired by common forum questions and comments from readers. Have a comment or question about MS? Visit our forum. This week’s question is inspired by the forum topic “Do you use pain meds to get through day to day life?” from April 25, 2018.

September was Pain Awareness Month, and this column was inspired by the U.S. Pain Foundation’s 2019 campaign, #LetsTalkAboutPain.

I try not to talk about pain because it steals my focus. (Distraction is a kind of pain management strategy.) But I’m addressing the issue here because it’s a grievance that needs airing.

Dear doctors: MS pain is real

I’ve lost count of the number of times I’ve heard my peers complain that their doctors tell them that multiple sclerosis (MS) doesn’t cause pain.

But a look at archived research dating back to the 1950s revealed an awareness of pain in MS. In a paper published by the British Medical Journal on March 2, 1957, titled, “Multiple Sclerosis: A Plea for a Fresh Outlook,” the authors wrote:

“Pain is not at all uncommon in the opening phase of multiple sclerosis. It is usually described as an ache referred to the back or the upper or lower limbs. Occasionally it may be sharp, though it is not aggravated by coughing or straining. A recent history of pain should not automatically exclude multiple sclerosis as a possible cause of an episode of paraesthesiae.”

How can doctors deny patients the reality of MS pain? Unfortunately, that’s happening in 2019, as Multiple Sclerosis News Today columnist Ed Tobias wrote.

It seems that medical school training for complex chronic conditions like MS has dropped the ball on this crucial detail, leaving many of us with MS helpless in the face of the errant belief that “MS doesn’t cause pain.”

Just consider the muscular system and its dependence on nerve signals from the brain. When the system is malfunctioning, muscles spasm, stiffen, or cramp. Last time I checked, this causes pain.

Types of MS pain

MS pain involves more than nocturnal leg cramps, foot contractures, and girdle banding, otherwise known as the dreaded “MS hug.”

The MS International Federation cites four kinds of MS pain. Following is my list of MS pain types as someone who lives with it and knows others who do, too:

Pain management for MS

Living with pain is a given for those with MS. Unfortunately, our pain can be persistent and lead to depression, disability, and even suicidal thoughts. It’s not enough to expect us to “just power through it.”

And yet we live in a time when opioids — the first-line pain treatment for too long — have led to two problems: dangerous outcomes such as addiction, and loss of access to these therapies for those who need them due to treatment protocol changes. In the wake of the opioid epidemic, other pain management options are garnering attention.

Following are some pain management strategies. If you are considering any medical treatments or other therapies, please discuss them with your doctor.

Discuss your pain symptoms with your doctor. With any luck, they’ll listen to you and believe you. If they don’t, maybe it’s time to shop around for someone who will.

If you or anyone you know is experiencing suicidal thoughts or need someone to talk to, please call the National Suicide Prevention Line at 1-800-273-8255 or visit suicidepreventionlifeline.org.

Have an experience you want to share? Leave a comment here or at the original forum topic.

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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

7 comments

  1. Steven carr says:

    I find the best way to avoid pain of the this illness is to smoke Marijuana I take Gabapentin and amandine but between4pm and 9pm I go into spasm mainly legs every day? Anyone else??

    • Karen says:

      I would definitely try this if I could find how without spending a lot of money just to get the medically necessary card and what they charge for the actual marijuana. When your disabled money is an issue so you unfortunately are limited to what insurance will help pay. Many times I thought about trying to find someone who would sell privately but with my sucky luck I’d get busted. Im happy that you have relief:)

      • JR says:

        I can’t speak of every state, but in Michigan you can get edibles that are not that expensive and can help.
        Gummies here (which I’m sure there are 1000 varieties already) can be purchased from a dispensary that you only eat 1/4 to 1/2 of one daily for those “evening” spasms and they end up costing around $10 per edible / $5 per dose.
        That is more expensive than the meds that I buy, but not greatly more.
        As this legal cannabis becomes more widespread, the cost should go down even further. That’s my hope at least.

  2. Erik oxy says:

    I have had MS for close to 30 years. Pain has been a major factor for about 25 years. My big complaint seems as the medical society seems as if it is more into quantity of life not quality. I had been on opiates for about 15. In which I was working more full time plus more. Now I am on tramadol and lyrica, which helps but not completly. I can’t work anymore…

    • JR says:

      I can’t speak for every case, but if being on opioids made you functionally able to work and the other treatments do not, I would fight like crazy for those opioids.
      The “war on opioids” is rooted in a truth, but for honest pain patients we need to keep fighting for that access.

  3. RCG says:

    Both overall commentaries are absolutely on point here: ACCESS to treatment, whether it is opioids, massage, medical marijuana. and,
    AFFORDABILITY of treatment.

    My feeling is that MS is addicted to me. Pain is addicted to me. Yes, I am (italics) dependant on (rather than addicted to) opioids but that is necessary for my pain to be controlled! I know I can stop using them as I’ve done it a number of times over the years but that leaves me unable to do anything without extreme pain. I have always taken them precisely as directed, or less. This is real: I’ve had cervical spine fusion and must have both big toes bones removed/replaced with a titanium rod.

    I believe it is far past time for insurance to recognize that treatment with things like massage therapy can help beyond words and this should be covered. Chronic disease deserves more inclusive care.

    The medical benefits of marijuana have also been long-standing for those with open minds. Marijuana growers are working a cash business and are being flooded with money! They too will become part of Big Pharma at the prices they charge. I can see it for recreational use but not for medical patients.

    OR if this is to continue, insurance must also pay for medical marijuana. Cynical, I know. All I see is money going to the same groups and those who are considered “less than” like MSer’s go without.

  4. Tim Carter says:

    My wife has lived with MS over 20 years, and her pain is present daily mostly in her legs. She takes medication to help, but I can’t help but wonder what is her body trying to tell her? Probably having pain because the nerve signals to the nerves are not connecting because of broken loops due to sclerosis of the nerves. The most frightening events are nighttime leg cramping and pain. This can occur any time and persists even when she is medicated. I try to help her get plenty of water and leafy greens to help keep everything working right. I have to pray often because is is so hard to see a loved one in pain. When she has a fall it is if some invisible foe has pushed her down. I will continue to fight for her.
    I hope others will join

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