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My Experience with the Hug

In 2003, I experienced something that I couldn’t name for 13 years. There was exactly one good thing about my diagnosis of MS, and that was the knowledge that there is such a thing as an MS Hug.

I will never forget the first time it happened.

Our son was born prematurely, and so, for his first 2 years, I worked days and my husband worked nights, so we didn’t have to put him in daycare.

One morning, when my husband came in from work, I was writhing around in bed, half asleep and in pain. He frantically asked me what was wrong, but I couldn’t put it into words. There were snakes of pain wrapped around me, and I couldn’t get away from them. He called 9-1-1, afraid I was having a heart attack. But then, as suddenly as it came on, the pain stopped. By the time the ambulance arrived, it was over. The paramedics checked me out and told me it must have been a muscle spasm and not to worry about it.

And so, the next 13 years began.

The ‘back spasms’ came on with no regularity. Once I went 3 years without having even one; another time—one very bad Thanksgiving holiday— I had 3 in one week.

Sometimes it seemed like they’d happen when I was particularly stressed; sometimes, for no reason at all.

I lived in fear of them; I was psychologically and physically tortured by my own body. I never knew which day of work, personal or business travel, or family activity would be sidelined.

Over those 13 dark years, I had three different family doctors; two different rounds of physical therapy; and multiple trips to the ER. Never once did someone suggest there could be a major medical problem that could be causing them. The only help I ever got was from a PT who prescribed a TENS Unit; he didn’t know I was dealing with neurological pain from MS, but just took a guess that it might work.

So was does it feel like? As with everything with MS, everyone is different. But for me, my hugs follow the exact same course, only differing in strength and length of time.

First I feel sick to my stomach. Since I never have stomach upset, it should be a clue. But since most of the time, they come on out of nowhere, I don’t figure it out right away.

But then, I start feeling the squeezing feeling around my ribs. It feels like a wrestler with huge hands is standing behind me, gripping my sides.

At that point, I know what is happening, and the silent praying and bargaining begin. I don’t want it to be happening; I can’t stop it; and I don’t want to admit it. The worst is when I starts in the middle of the night. My eyes pop open in the dark, and I lie there, franticly wishing it away. I don’t want to see the look of sadness on my husband’s face when I tell him what’s happening.

Then, the knot of pain starts forming on my spine. I can see it clearly in my mind, a rolling ball of agony, right where my bra snap is.

At this point, if I haven’t gotten my TENS Unit on (or now that I have it, taken a Baclofen), I’m on the full ride of pain. The TENS Unit can interrupt the pain and the Baclofen works in ways that regular pain meds don’t on neurological pain. (I’m not a medical professional, but that’s what I’ve been told and have experienced.)

When the hug is in full power mode, I writhe, trying desperately to get away from it. The boa constrictor is around me, squeezing and pulsing. I get hot (maybe my blood pressure is up), and I can’t stand to be touched. I go from lying down, to walking, to taking a shower (maybe the hot water will help…no, it doesn’t), to lying down again, exhausted.

The ball of pain on my spine takes on a life of its own. By now, it is a dark and boiling vortex of energy.

Just when I think I can’t take it anymore, the pain snaps like a broken rubber band. I can feel my back and sides relaxing. I’m tired, exhausted from fighting my central nervous system.

The next day, I’m better – unless the Hug returns. My back feels tight and sore for a day, and then life is good again. Until the next time.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Cardgal18
    1 year ago

    I.too only have half a hug. It is pretty much constant as I have an area of spasticity on my right side right below my ribs. I can feel it differently depending on my level of activity, the more I do, the worse it gets. I have found that over the counter lidocaine helps, there’s a roll-on and a lotion. I have had a couple of hugs completely around my body, and I live in fear of the day I have them all the time. Mine is mostly pain, not the squeezing but I’ve had it too. I was diagnosed in 2009. I take lyrica and Xanax with an occasional tramadol for the pain. I have an MS friend in my support group who only has it on one side, she describes it as a ball under her ribs.

  • katrina
    1 year ago

    Well written, thank you. I get pain and tightening but it always only on the left side of my chest. I went to the hospital once thinking I might be having a heart attack. I can’t take a deep breath without increasing the pain and lying on the left side hurts more. I have only had this severely twice and always in the night waking me up. I have had nothing wrong with my heart, so I have concluded on my own it is a MS hug but that only effects half of my chest. My neurologist had not heard of the MS hug but from MS sites I knew it existed. It seems to be the only explaination.

    Have you ever had or heard of it only effecting one side of the chest?

  • Erin Rush moderator
    1 year ago

    HI Sharelo! I am sorry you are so familiar with the “MS Hug”! I have to say that your description is one of the most detailed, thorough accounts I have ever read! What a gift for people who have never experienced this issue. Your description can give them a small idea of what someone experiencing an MS HUG is feeling. While, as you mentioned, each person may experience the hug uniquely, I think you really hit the nail on the head with your post.

    I sincerely hope you never have to deal with another MS Hug again!

    Thank you again for sharing and for your vivid description!

    Wishing you a hug free 2018 (and beyond!), Erin, MultipleSclerosis.net Team Member.

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