The MS hug is a symptom many individuals with multiple sclerosis are all too familiar with. It’s a hug that is not only uncomfortable but also undesired. The MS hug can be described as chest pain, rib pain, or a band of tightness around the chest and/or torso. It can be felt anywhere between the neck and the waist, and might occasionally feel so tight, that the individual experiencing it has pain or difficulty breathing. For many, it can be excruciating, frightening, and resilient. Recently, members of the MultipleSclerosis.net community shared their description of the MS hug, and the results were incredibly interesting and varied. Below are some of the community’s reactions.

Am I having a heart attack?

As mentioned, the MS hug is most commonly described as a chest pain or an uncomfortable tightness around the torso, making it difficult to breathe. This has caused many of the MultipleSclerosis.net community members to initially mistake it for a heart attack.

“The first time it happened I was home alone and almost called an ambulance because I thought it was a heart attack. Then it suddenly let go. And It’s not just in the upper body, but happens in the mid-section and lower abdomen, too. Takes my breath away.”
“I had a problem with MS hugs before I was diagnosed, thought I was having heart problems.”
“I questioned if it was a heart problem. It usually hit me when I was sitting still on my bed, usually at night.”
“Frightening, I thought I was having a heart attack.”
“I have experienced this. I have been to the ER to make sure it’s not a cardiac event but feel like they treated me like I just wanted pain meds. I don’t have a when or why. Mine are extremely random and have even woke me from my sleep. I wish there was help for this.”
“When I get them it’s always at night and it wakes me up. The first time it happened I was convinced that my son was going to find me dead because I was sure I was having a heart attack.”
“I went to the ER to make sure it wasn’t cardiac related. I was treated like an addict and a seeker! Having an invisible disease is one of the hardest parts about having MS.”
“Before I knew exactly what it was, I thought I was having a heart attack.”

Fighting the pain

The physical pain of the MS hug can be extremely intense. For many, the pain can radiate anywhere between the neck and the waist. However, in some cases, members reported this pain and pressure can take over their whole body.

“I feel so helpless when my wife gets them. She looks like she can’t breathe and is in a whole lot of pain. They come without warning too.”
“Totally real and totally awful.”
“The pain was so bad I couldn’t even stand up to get help. I take gabapentin and dronabinol, so they are less severe and less often.”
“My pain starts around the center of my chest, wraps around to the right like someone is pulling out a rib or two, and during bad episodes continues all the way around. It’s always on days when I have overdone it, – not enough sleep, overheated, or dehydrated.”
“I have had a few small, brief MS Hugs and then I had the ‘big momma’ hug at night where the pain was so sharp and intense that I couldn’t breathe. It would come in waves and I was able to catch my breath between each one. I was crying, and my husband was holding me most of the night. I took two Aleve and tried to take deep breaths and exhale slowly. After about two hours of this pain, I was able to relax enough to catch my breath and get some rest. I got a prescription for this the next day.”
“Makes you feel like you’re being squeezed tight, and it’s hard to breathe. The only time it feels better is when I have a good night sleep (which doesn’t happen much).”

Extreme variety in the length of the hug

The MS hug can last a few seconds or can be persistent and last much longer. Some have reported brief episodes of pain and pressure that comes and goes quickly, while others report experiences that last for extended periods of time.

“The MS hug is the bane of my existence. Having Primary Progressive MS, it is with me all the time. I find keeping active is my best therapy. Heat and humidity intensify it. I’m so glad I own a house in the mountains.”
“Mine came on out of the blue & stayed constant for 2 yrs.”
“I’ve been hugged nearly all day today.”
“It’s bad, I’ve had it twice, once it lasted over a month and this was when I was being diagnosed so I didn’t know that’s what was happening. It’s a terrible feeling.”
“I had an MS hug in my neck and chest for 18 long months. The day I realized it was gone was one of the happiest of my life! I still get it from time to time but not as bad as it was before.”
“I had it for almost 2 months recently.”

For many, a hug can be warm and comforting. But when it comes to an MS hug, the situation is quite the opposite. As many have shared, the MS hug can be distressing, aggravating, and unwelcomed. If you or a loved one are experiencing what is thought to be an MS hug, consider visiting your doctor or healthcare provider as soon as possible. They might be able to determine the source of your pain and potentially provide options for relief.