Need to Know: The Hug You Never Want to Receive

Tamara Sellman avatar

by Tamara Sellman |

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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 “Have you ever had an MS hug? What does it feel like?” from Nov. 6, 2018.

Ugh to “the hug.”

I’m having a series of these as I write this column. Girdle-band sensation is a more straightforward description of the neurological pain — a form of dysesthesia— that many with multiple sclerosis (MS) refer to as “the MS hug.”

You don’t want this hug — ever

Technically, the “hug” describes spasms in the muscles between the ribs, known as the intercostal muscles or “muscles of breathing.”

The ironic moniker refers to the location of the spasms: across the torso from the neck to the waistline — the same places where you might feel an embrace.

But this is no comforting hug. The muscles in these tight spots spasm in a way that makes you feel like you’re wearing a too-tight girdle that “hugs” so intensely it can make it difficult to breathe or to find a comfortable posture.

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It’s possible that my first MS symptom was a hug that I experienced back in 1975. I couldn’t breathe and instinctively dropped to the floor and did what I now know as “cat-cow” stretches in the yoga tradition. (I was not doing yoga in 1975 — I was still climbing trees and riding bikes. I’m pretty sure I had never even heard of yoga back then.)

My current hug is an intermittent one. While it comes and goes and it doesn’t take my breath away, it isn’t making it easy for me to sit in a chair, either.

I’ve had previous torso spasms like these that literally kept me in stitches (not the “ha-ha funny” kind) for upward of 24 hours without a break. They warranted a phone call to my MS specialist on a Saturday night before the Christmas holiday, when pharmacies were closed until the next day. Because, of course, there’s nothing like an MS symptom rearing its ugly head just when you can’t get the relief you need.

What causes girdle-band sensation?

You can blame the MS “triple threat” for bringing on this symptom: overheating, fatigue, and stress.

After a busy July Fourth holiday, some of it spent traveling to hot and humid conditions while worrying about an injured loved one, I can point to this triple threat for the onset of my current hugs.

Taking off the girdle

An MS hug will often be brief and resolve by itself. The spasms aren’t caused by overuse or strained muscles, but by neurological misfirings that make the muscles “tweak” even during a relaxed state.

Relief for girdle-band sensation that continues over time is usually achieved through medications or other simple treatments.

  • Medications that can help to treat MS hugs include gabapentin, pregabalin, or amitriptyline. I find relief using baclofen, with Advil (ibuprofen) for a boost, when the pain is particularly severe. Pain-relief medications can help with related inflammation. Speak with your doctor before taking any medications.
  • Yoga can help! Deep belly breathing is relaxing and beneficial. Or, you could try gentle massage or physical therapy.
  • Some people apply cold or heat to the torso for relief.
  • Tight clothing can help, as the pressure against the rib cage can ease the sensation. This may seem counterintuitive, but it’s worth a shot if you’re in pain.
  • Applying gentle pressure with a flat hand to the spasming rib cage site might also help.
  • I’ve had some temporary success using a transcutaneous electrical nerve stimulation (TENS) unit. Caveat: If you decide to use a TENS, you need to be thoughtful about its placement and keep it away from the heart area. The muscular area on the back just below the rib cage, or on the shoulder blades, are two places that have worked for me. Consult with your doctor before using a TENS unit and follow the manufacturer’s instructions.

Is it ‘the hug’ or something else?

Better to be safe than sorry. Some extreme cases of girdle-band sensation may leave you feeling like you’re having a heart attack or an episode of high anxiety.

If you’re unfamiliar with an MS hug and experience new sensations that might also be described as palpitations or anxiety, seek medical attention immediately. Not everything is related to MS.

Follow up with your MS specialist. They may want to order an MRI to see if you’re having a relapse if the hug symptoms last more than a couple of days.

Do you experience girdle-band sensation? How do you find relief from the hug? Post your replies in the comments below or at the original “Have you ever had an MS hug? What does it feel like?” forum entry.

***

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.

Comments

B. SANCHEZ avatar

B. SANCHEZ

My MS hug is usually around my chest, neck upper back and nape. I know that aI am having a "flare up" when this is happening. I tend to take baby aspirin or a muscle relaxer to help ease the symptom. This episode usually occurs when I am tired or feeling stressed out or anxious. Sometimes I don't know why they come on.

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Tamara Sellman avatar

Tamara Sellman

Sounds painfully familiar! I tend to go with Advil and/or baclofen, depending upon the severity. And while mine come as a result of stress or fatigue (usually), there are times when I have zero idea how it happened. Who can say for sure what's going on up there in the brain to cause it at any given moment? It's a mystery, for sure.
Tamara

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Erin Franco avatar

Erin Franco

Thanks so much for the relief ideas!
My hug isn’t painful. It’s just uncomfortable with lots of tingling and sometimes I sweat just where it occurs. It only goes up to just above my belly button and is usually isolated it to the front, but sometimes it likes to take a tour all of the way around. It started right after my second son was born. For years I disregarded it.
Four months after a bilateral oophorectomy I got pregnant (they said I wouldn’t be able to for at least a year)
Myself and doctors thought the hug was a result of the pregnancies impact on my abdomen which hadn’t recovered from the vertical and horizontal incissions.
This disease is sooo hard to diagnose

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Tamara Sellman avatar

Tamara Sellman

Hi Erin
happy to help! And you're right, this disease is so mysterious!
Tamara

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Tina A avatar

Tina A

I have used CBD with one small "hit" of an indica strain of cannabis to ease the symptoms of and MS hug. (Who was the sick ba$&ard who named it a hug? It's more like a vice grip around my ribs!)

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Tamara Sellman avatar

Tamara Sellman

Yes, that's a wacky sense of humor, right? "Vice-like grip" makes much better sense!
Tamara

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Jill avatar

Jill

Hi. I’ve just started experiencing this kind of pain. I haven’t been to a doctor yet for any diagnosis. I’ve just found this stuff online and it fits what I’m experiencing. Also, while in the shower, I was unable to lift my right arm to wash my hair because of the pain in my bicep. They’ve also been very sore. And I get a squeezing pain on the right side of my neck sometimes too. Of course, family doc is on vacation this week and next. What do you recommend I do?

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Sue avatar

Sue

When I described what I experienced to the ms nurse she said ‘oh that’s called a hug’ but listening to others, I’m not sure it is.
For me it’s like a muscle tightening below my breast line. It felt the same as when I was pregnant braxtin hicks contractions. It’s not painful at all just feels weird. There’s also a slight sensation like irritation/allergy of my skin in various places around my bra line. If I tap on the area it goes away. I’m not sure now if this is a hug or just a symptom I have? Does anyone else have this?

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Tamara Sellman avatar

Tamara Sellman

Sue, it sounds like a less severe hug, to me. Mine aren't always painful, just there. A strange tingle and muscle tightness. Could be yours are much more tolerable (and thank goodness for that!)
Tamara

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FB avatar

FB

I occasionally get the typical MS hug of a spasm of some of the intercostal muscles, but fortunately not too badly. However the thing that is a constant irritation all day, every day and which is worse some days than others, is the feeling of having a broad tight elastic band around my chest just under my breasts. Women will understand it when I say it's like having a bra on which is several sizes too small, and the sensation is there whether I'm wearing a bra or not. For men just imagine having a luggage strap wrapped around you and done up too tight. Oh the joys of MS - it has endless ways of playing games with you..............

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Tamara Sellman avatar

Tamara Sellman

Yes, you describe it well. I find that there are some days I just can't wear a bra because of the tightness. (Or I wear a soft, looser sports bra or a tank underneath my clothes.)
Tamara

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Pam avatar

Pam

I haven’t had anything like I’ve had for the last 48 hours. It is not letting up. So much pain. I’ve tried ibuprofen and acetaminophen and nothing changes. Crushing pain around my rib cage and I can’t find any position that helps. Thank you for your comments. It helps to hear what you have done. I didn’t realize how much I had to be thankful for when I was just tired and unable to stand for long or walk any distance. This pain is as bad as I’ve felt with a collapsed lung, severe cramps, and the pain I felt just before my gallbladder was removed 43 years ago. I’m going to try aleve now. I’m hoping that 2 days is as long as it will stay. I’m listening to music, deep breathing, stretching, drinking hot drinks and trying gentle pressure. 😩

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Dee Dee avatar

Dee Dee

I get the sensation lower, right under my rib cage. Heat is definitely a factor. Usually I am outside grilling when it hits, and I usually can't eat when its happening. Once I cool off it usually fades over an hour or so. Occasionally I have it lady for a full day or more. That's the worst because I have trouble sitting comfortably, so driving is out.

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Tamara Sellman avatar

Tamara Sellman

For me, heat is definitely a trigger. It's one of the reasons I really can't take hot showers or baths anymore.
Tamara

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Julie avatar

Julie

BI-PAP MACHINE MADE MY MS HUGS BE A THING OF THE PAST!
I'm glad you wrote about the MS hug. However there is a treatment that for me has been 95% successful. When I got first diagnosed my Ms hugs kept increasingly getting worse and it started to decrease my dead today breathing. Example would be harder to read my child books or talk in a conversation. I even went to a pulmonologist and found that my lungs kept decreasing in lung capacity. I was at 85% and at the worst was 44% lung capacity. So the MS hug those intercostal muscles wer severely reducing my lungs ability to inflate and deflate. I started to wake up at night gasping for breath. The MS hug sent me to the hospital because I couldn't breathe . I went to the Mayo and thank goodness my neurologist told me to get a BiPAP machine to wear at night! I wear my BiPAP machine at night and with any muscle spasm the importance is to stretch the muscle no matter where it is in the body. And so the BiPAP stretches the intercostal muscles forces my lungs to fully inflate and deflate. After two years of use of my BiPAP my lung capacity increased to 85% . I now don't have Ms hugs now I would call it a little tightening. And if I feel that I just take myocalm which is a natural muscle relaxer with magnesium. Magnesium is a great for the muscles. I don't know why I never read treatment for Ms hugs a BiPAP machine. Because it makes total sense. Tight muscles muscle spasms what does a physical therapist tell you, stretch the muscle, work the muscle and that is exactly what a BiPAP machine does. And also the addition of magnesium is important for the muscles. I hope one day when I read about the MS hug the treatment or suggestion will be a BiPAP. Because it has been transforming for me because before I had the BiPAP the MS hug got so bad it sent me to the hospital. And now with the BiPAP, it's not a part of my day anymore

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Tamara Sellman avatar

Tamara Sellman

Thanks for sharing your story, Julie.

I'm also a PAP user (I use AutoPAP for sleep apnea), and I'm a sleep technologist.

My suspicion is that BiPAP is:

a/very expensive and hard to justify to insurance companies without a specific kind of diagnosis to reimburse for it, and

b/PAP is still something people are unwilling to try in general.

Which is soooooo unfortunate... I LOVE LOVE LOVE using my PAP machine; it has literally erased my daytime sleepiness and fatigue.

I've seen some research suggesting PAP be considered for people with MS because of its ability to mitigate the fatigue and because people with MS are far more likely to have sleep breathing disorders, but it's not there yet from a mainstream insurance-payer perspective.

Keep your fingers crossed...that could change as they do more research.

Tamara

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Charles Breuninger avatar

Charles Breuninger

I have found that my "MS Hug" is very brutal and sometimes scares me when it localizes in my upper chest. This was very worrisome for me for quite some time as I have also had a quadruple heart bypass surgery (CABG) just 5 years ago. I've lost a significant amount of weight since then and gotten my Type II diabetes under control since then, and had already quit smoking a year prior, but it was SCARY when I thought I was having ANGINA or actual HEART ATTACKS! My MS Doc (neurologist) upped my dose of Baclofen and it helps, but now that I know *what* it is, I'm not as afraid of it, but certainly still quite bothered and sometimes crippled by it. It's not a fun time.

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Tamara Sellman avatar

Tamara Sellman

I can imagine the anxiety that your hug must give you, Charles. Yours is a great reminder that, when in doubt, check it out... a hug might be a heart problem, or something else besides the girdle band sensation.

Tamara

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Cynthia King avatar

Cynthia King

That too tight bra analogy is perfect. What I find though, is the area in my back, sort of under the shoulder blades sort of "shorts' out the muscles there used to hold your body upright. After the hug this instability lasts for a while, and it really affects everything I need to ambulate under my own speed. I often wondered if I had a lesion there, but ms follows no rules so who knows?

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Tamara Sellman avatar

Tamara Sellman

It's hard to say if there's a connection between lesion location and the hug symptom. I have the same experience. In fact, just got back from a camping trip where a hug woke me up out of a deep sleep at 430am. Luckily it was warm enough outside the trailer for me to recline in my zero gravity chair with a blanket to get some semblance of comfort (I couldn't lay flat in the bed, that's for sure). I took Advil and baclofen... about 2 hours later it had subsided enough to go back inside and sleep a little while longer, but I do remember noticing that strange instability you describe. You are not alone, Cynthia!
Tamara

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Rachel Bailis avatar

Rachel Bailis

Thank You all for posting your stories and experiences. I have been to multiple specialists for over 3 years with this pain in my flank. In November 2018, my GB was only functioning at 17% and was removed. I guess with the anesthesia, I thought the pain was gone. Was I wrong, the pain traveled with evengents to the left flank and I thought I was going to die. Every test that could be done on my body was completed, still no answers. Until my breathing became more and more difficult and my oxygen levels continue to drop to dangerous levels. Finally after many years I got the answer as to why I was having so many problems with breathing. I was diagnosed with SPMS in September 2019, and been getting treatment. "THE MS HUG" is real... I am new to all this and at times very scared.

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Karen Patterson avatar

Karen Patterson

My 'hug' feels like a truck parked on my chest just above the breast line. It gets so tight I can't breath or swallow. I find the only thing that helps is burping. I know stress causes it. Sometimes it is feeling tired yet I don't experience it with the exhaustion I tend to have regularly. Those symptoms are in a league of their own. Usually this vice-like crushing grip around the base of my throat tends to take me by surprise and when I least expect it. I am sad and happy I am not the only person suffering with this. Karen

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Tamara Sellman avatar

Tamara Sellman

Yes, Karen, you are not alone, and it really can be just as bad as you describe. I'm sorry that you have to go through it. It also does seem to catch me by surprise as well... very unwelcomed! Hope you're doing well for now. Best, Tamara

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Tamara Sellman avatar

Tamara Sellman

Hi Rachel
Glad I can shed some light. So sorry it took that long to solve such an awful pain mystery. I wish there was more available to help people with SPMS, but at least now you know the "why" and can take some action to find symptom relief. Good luck to you!
Tamara

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Ramona avatar

Ramona

Hello everyone. I am 38 years old and have never been diagnosed MS, but what you describe here is the closest to what happened to me yesterday. I felt a sudden pain in the right side of my chest and upper back. I couldnt breathe properly without feeling excruciating pain that seemed inside my lung. And I couldnt stand straight or totally fill my lung with air. It has been like this since yesterday and i keep feeling this pressure on my rib cage right side which sometime almost makes me cough. It doesnt feel like an actual lung issue, more like something squeezing and putting pressure... I wonder if i have MS, but now with the COV issue, going to a doctor is a challenge.

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Tamara Sellman avatar

Tamara Sellman

Hi Ramona,

If you don't have an MS diagnosis, then maybe you should start with a more simple explanation: a pulled muscle.

MS has a broad constellation of symptoms, and not everyone gets "the hug." But people with MS do have extremely life-altering fatigue, numbness, problems with speech, struggles with walking, balance and coordination issues, major eye and facial pain and headaches, incontinence, cognitive "fog," leg and arm tremors, memory issues, etc. Are you experiencing any or all of these symptoms, too?

If all you have is a pain across your rib cage, that is not even remotely going to inspire a referral to a neurologist. Your best bet is to actually see a doctor and not go online to self diagnose over a random symptom.

I don't mean to sound unsympathetic, but it's really never a good idea to take medical questions like these to the Internet. Only a doctor can diagnose.

Yes, seeing a doctor will be a challenge during these tough times, so why not wait it out a few days and see how you feel? If it's only a pulled muscle then it will go away and you'll not have tied up the medical system unnecessarily. If the problem continues to worsen and you literally cannot function because of pain and an inability to breathe, consider a call or private portal email to your urgent care or primary care physician to see what they would like you to do, as the ER is probably not going to be a choice. Most healthcare workers are actively serving COVID-19 containment, so you may still find you will need to wait. Good luck,
Tamara

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Pam avatar

Pam

I have not officially been diagnosed with MS but I sure do feel like I meet criteria. Several years ago, I went to ER after having trouble swallowing and diagnosed with dysphagia which went away. A year and a half ago, I was diagnosed with herniated disk after severe back pain.

Not long after back pain dissipated, I developed numbness in my lower right leg along with spasms that come and go. Several months ago my right eye started twitching randomly. It started out as small twitch that came and went quickly then when I sneezed or coughed the twitch became more pronounced. Then it disappears for a bit then twitching returns. I am getting headaches frequently. Now I have a pain radiating from my back, right shoulder blade to my right armpit. Not a sharp pain, just an uncomfortable tightness and aching. I find it more uncomfortable and constricting when wearing bra.

I am 52 years old and have read that MS is less common at this age, so I'm not sure. Doctors keep suggesting it's hormonal due to perimenopause and stress but I'm not so sure.

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