The MS Hug: A Frightening Embrace You’d Rather Not Have

The MS hug can be caused by nerve damage or muscle spasms

by Ed Tobias | November 18, 2022

In the 42 years that I’ve lived with multiple sclerosis (MS) I’m glad that I’ve only been hugged twice. I’m talking about the MS hug, and it wasn’t fun. This MS symptom can feel like pressure or pain around the chest, back, or stomach, and it can be scary.

Some people described it on the MS News Today Facebook page as follows:

“It’s like a charley horse in my ribs while I’m wearing a compression belt. The more I move the tighter it gets.”

“It feels like my lungs are being crushed against my ribs and not able to fully expand.”

“Mine tightens like the worst bear hug you can imagine, crushing all of the air out of my lungs and making it sound like I am coughing or choking. It goes on wrapping me up over and over for a good couple of minutes.”

“It feels like my body is in a compression sock. … It hurts to breath or move. It can hurt when your heart takes a beat and you can feel your blood moving everywhere like a buzz beneath your skin. It is an experience that is frightening.”

Some describe the MS hug as feeling like a heart attack that lands them in the emergency room. Calling an ambulance in that situation probably is the best thing to do if you’re uncertain about what’s happening. One of my hugs brought me to my knees as I tried to breathe. I didn’t recognize it as the MS hug, and my wife asked if she should call 911. But my hug eased after a couple minutes.

How Stem Cell Transplant Can ‘Reset’ Immune System in MS: Study

How long does the MS hug last?

The MS hug can last several minutes or several hours. For some, like me, the hug has struck only a couple of times over many years. Others report suffering from it every day, for as long as they’ve had MS. Some experience it as one of their first symptoms, sometimes even before diagnosis, but one woman wrote on Facebook that she has never felt it. “What is it?” she asked.

What causes it?

The MS hug can be caused by spasms, similar to how many people with MS have painful leg spasms. But, in this case, it’s the intercostal muscles, which help to expand and contract the chest during breathing, that spasm. The hug also can be a type of dysesthesia, in which pain, itching, or other abnormal sensations are felt in various parts of the body as a result of MS nerve damage.

What can you do about it?

There’s no medication specifically designed to treat the MS hug. But an article in Momentum magazine mentions the anticonvulsant medications Neurontin (gabapentin), Trileptal (oxcarbazepine), and Lyrica (pregabalin) to handle the nerve pain, and Lioresal (baclofen) to reduce spasticity. Several Facebook users have noted that steroid treatments have helped them. Always consult with your medical team before making any changes to your medication regimen.

Others have suggested self-help solutions including pressing on the painful location, wearing loose clothing, breathing deeply (although some prefer shallow breathing), and practicing mindfulness.

Like everything else with MS, there’s no one-size-fits-all solution. Your own ideas are welcome in the comments below. You’re also invited to visit my personal blog at www.themswire.com.

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, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Print This Page

About the Author

Ed Tobias People say to write what you know and Ed Tobias knows about MS. He's lived with the illness since 1980, when he was 32 years old. Ed's a retired, award-winning broadcast journalist and his column combines his four decades of MS experiences with news and comments about the latest in the MS community. In addition to writing his column, Ed is one of the patient moderators on the MS News Today Facebook, Twitter, and Instagram sites. He’s also the author of “The Multiple Sclerosis Toolbox: Hints and Tips for Living with M.S.” Ed and his wife split their time between the Washington, D.C. suburbs and Florida’s Gulf Coast, trying to follow the sun.

Comments

Sharon Hughes

I was diagnoses with MS at the age of 26 in 1984. I call the "MS hug" pain "girdle" pain and have been experiencing it off and on for almost 40 years. I recall describing it to my neurologist years ago as a "vice like girdle wrapped around my entire trunk area" and was relieved to hear that it was MS related and no longer worried about having a heart attack. I will go for several months without this symptom and then it happens daily for several days or weeks at a time. Practicing yoga helps with the pain. Tried medications years ago and they did not help me. I sympathize with anyone who experiences this symptom. It is painful and can be scary.

Ed Tobias

Hi Sharon,

Thanks for sharing that info. I'm glad that yoga is able to help but the uncertainty of when the hug will hit again must be unnerving.

Jean Delaney

I thought I was having a heart attack & the EMT's thought so to. Ambulance to the hospital. This was in July. I had not yet been diagnosed with MS; in fact no one was even suggesting it. I was diagnosed on Oct 31.

Ed Tobias

Hi Jean,

Interesting. Have you told your neurologist about your experience? If so, what did he or she have to say?

Jen

Ed, I get an intermittent pain, worse as the day wears on, down the left side of my rib cage. This has happened many times over the years and the bouts can last a few days to a few months. One time I was hospitalised for a suspected kidney infection but testing showed no infection and the doctors said it was probably MS. The next time I thought, I'm not getting fooled again -- and was diagnosed with a kidney infection, but only after three months of pain and nausea and losing 7kg. Another theory is constipation. It doesn't respond to analgesics. Does it sound like MS Hug at all?

Ed Tobias

Hi Jen,

It doesn't sound like the two or three times I've had the hug. Have you talked with your neurologist about it?

Jen

Actually, perhaps I haven't mentioned it to my new one ... a brighter, younger neuro who goes to all the meetings, who listens and respects my opinion and ideas (!)
Ill put it on the list. Thanks.

Ed Tobias

Jen,

That neuro sounds like a good one and definitely a resource you should take full advantage of.

Kit Minden

L-theanine strengthens nerves, also get bloodwork to check potassium, calcium, and magnesium levels and aim high for those.

Ed Tobias

Thanks for the suggestions, Kim. Have some of these helped ease or reduce the hug for you?

Tamsin

I was diagnosed in 2015. I've been having the MS hug quite often for about 3 or 4 years now. I spoke to my neurologist about the pains and she didn't tell me it was a symptom. I've spent 2 years with my GP who also didn't know what it was doing X-rays, etc. He thought it might be mini heart attacks. It certainly felt like them. The worst have always been brought on by anxiety and stress. I've been treating them by going to bed, taking anxiety meds and trying to deep breathe and focus on a podcast or an audio book. My physio therapist has been helpful too, she massages my diaphragm and it helps relieve the tension in all the muscles which are "frozen".
I found only found out this was the MS hug from reading an article on this website, so I am very grateful to you all.

Fill in the required fields to post. Your email address will not be published.

The MS Hug: A Frightening Embrace You’d Rather Not Have