An Uncomfortable Hug

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.

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Comments

  • julie lowndes says:

    I get bad pain in my left breast. It usually goes away in about 20 minutes. Tonight it’s going on 2 1/2 hrs. I went to ER a few weeks ago as pain spread to my left arm. They said I didn’t and sent me home after a EKG etc. does anyone have th

    • Angel Blair says:

      Thank you for reaching out, Julie. I’m sorry to hear about the pain you’ve experienced, I hope you can follow up with your doctor about this issue and find more answers and management to address it soon. If you’d like to reach out to others to ask about their experiences you can do so on MSAA’s online peer forum My MSAA Community, https://mymsaa.org/msaa-community/my-msaa-community-forum. Here you can ask questions and obtain feedback from others living with MS. If you have other questions please feel free to email MSQuestions@mymsaa.org. Thank you and take care. Angel, MSAA Client Services Specialist

  • Sarah says:

    Just got home from the hospital from what I think was my first MS “hug”. I was at work and thought I was having a heart attack. It started in my back, then chest and even my throat and neck and for a few moments, my head. Went to the ER and my EKG, CT, chest x-ray and labs all completely normal. I mentioned the MS hug to the doctor and nurses and they had not heard of it. When the doctor came back, he said he read about it and thinks that may have been what was wrong and to follow up with my neurologist. It’s a scary and painful thing to go through.

  • Sarah says:

    Just got home from the hospital from what I think was my first MS “hug”. I was at work and thought I was having a heart attack. It started in my back, then chest and even my throat and neck and for a few moments, my head. Went to the ER and my EKG, CT, chest x-ray and labs all completely normal. I mentioned the MS hug to the doctor and nurses and they had not heard of it. When the doctor came back, he said he read about it and thinks that may have been what was wrong and to follow up with my neurologist. It’s a scary and painful thing to go through.

  • Kathy says:

    Started having hugs just after my diagnosis. First one was scary. Thought I was having a heart attack. Have gone to the ER and have been treated poorly. They seem to happen at night. So that makes it hard to call my MS neurologist.

    • Angel Blair says:

      Thank you for reaching out, Kathy. I’m sorry to hear about the MS hug symptoms you experience and of your treatment in the ER. Having the issue happen at night can make it more challenging to follow up with your doctor about it when its occurring. Hopefully when you speak with your neurologist you can explain to them what symptoms come on at night and try to come up with a plan to help manage them and what you can do if you can’t get in touch with the doctor. Hopefully they can help to create a treatment plan to address this. If you have questions we can try to help with please email MSQuestions@mymsaa.org. Thank you for reaching out and take care. Angel, MSAA Client Services Specialist

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