The MS Hug – Our community shares their experiences

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MS is associated with a whole host of common symptoms, like numbness and tingling, vision problems, weakness, cognitive deficits, among many others. But then there are symptoms that are less “text book,” and therefore not as well defined. One such symptom is the MS Hug. Cathy Chester, one of the contributors and patient advocates who writes regularly for MultipleSclerosis.net, wrote a wonderful article describing the MS hug, including her own personal experience with this frustrating symptom. It turns out that many of our community members also deal with the MS Hug on a regular basis, and many of them shared their thoughts with us in response to Cathy’s article. Here’s what our community had to say:

I didn’t know what an MS Hug was the first time I had one

  • I’ve had it happen a few times. The first time I went to the emergency room because I thought I was having a heart attack.
  • I had one LONG before I was diagnosed, after the birth of my child. I only recently read about it and realized what it actually was!
  • I have had two – one before I was diagnosed. I took an ambulance ride I thought I was having a heart attack. I then had one about a month ago. It hurt so badly it felt like my lungs were being squeezed.
  • I had my first MS attack when I was 12 weeks pregnant I thought I was having a heart attack couldn’t even lift my left arm up.
  • I’ve experienced the MS hug 3 times in 3 years. It’s a scary feeling. I felt like my entire body was in a vice. I don’t ever want to experience one again, not sure what brought it on. I thought I was having a heart attack, but thankfully that wasn’t the case.
  • I can’t believe this. I just recently, as in yesterday, started having this “hug” pain and wasn’t sure if I pulled a muscle or if it was another wonderful MS “thing” that I was experiencing…thank goodness I came across this.

I find ways to cope with an MS Hug

  • I do adaptive yoga for MS (Yoga Moves MS). They have taught us a banana stretch lying flat on our backs. I do this every day. I use to have the hugs several times a day, but now maybe once a month if at all.
  • I can feel it coming on, so I just have to relax and ride it out! It can take 48 hours or more.

I really struggle with MS Hugs

  • These are the worst ever hugs; I wish that they would never happen to us.
  • I get a quarter hug – just the front on one side – usually the left. That’s enough for me. I don’t like it at all!
  • It’s more like the MS python!
  • It’s the worse hug in the world. I don’t want another at all.
  • I get them sometimes, I think it’s like a big snake wrapping itself around me and squeezing tight! It isn’t very pleasant at all!
  • When I get over-tired, I get squeezed.
  • They are horrible – it’s painful and hard to breathe. Those are the kind of hugs I can do without!!!
  • I had one recently during a relapse…no fun!
  • I take Flexeril almost daily and it still hurts. I also was glad to come across this very thing a couple weeks ago too!
  • It isn’t fun at all, since you never know when it’s going to hit.
  • Hugs are supposed to be nice. This is more like a vice.
  • I call it the death grip because it felt like a boa constrictor was squeezing me for almost 3 days.

People who don’t have MS don’t understand what it’s like

  • I stopped telling anybody about the hugs and any other issues or pain. Nobody understands unless they have experienced it. My husband says, “just work through it!!” For everything. Really?
  • My husband doesn’t get it. When I am going through a 24 hour fatigue he says I get tired to I just don’t sleep like you do I just deal with it. Ugh! It’s just not worth an argument

Even my doctors don’t know what an MS hug is

  • The first MS hug I’ve ever had I thought it was a heart attack. The hospital checked me out and I was fine. My Neurologist said that it was a MS hug, like I would know this. The doctor at the hospital did not know this. Go figure.
  • My doctors don’t even know what it is, like usual with my symptoms they say its not related.
  • Had one of these 5 years ago and I was rushed to hospital with a suspected heart attack, as the medical staff had never heard of an MS Hug!

How about you? Have you ever had an MS Hug? What have you done to find relief? Share with us in the comments!

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Comments

  • Michele Cates says:

    I have had MS since 1994. I never knew what an MS Hug is. From what I have seen on this sight, I am so sorry to hear about them.
    Another way for MS to make us victims. Grrrr !

  • scott davidson says:

    have gotten my 1st hug. feels like im being jumped on. was diagnosed in 94. avonex then moved to aubagio a few months ago. gonna try this banana pose yoga thing. hopin relief comes. thought i pulled something or a heart attack but it does stretch for relief. hoping this yoga pose does it better as other poses have for my legs

  • Marilyn Haney says:

    I am 80 years old and I do not have MS, but I have had the “hug”. First was in June, 2017, followed by 3 more almost a month to the day apart. Then nothing till Dec 2, 2018 and Dec 29, 2018. They have all lasted for different amounts of time, the longest one was 16 minutes.
    One coincident is that both 2017 and 2018 I was going through a reaction from an antibiotic with rash from neck to knees. Strange??

    • Angel Blair says:

      Thank you for reaching out, Marilyn, I’m sorry to hear you’ve experienced the hug symptom issues. That does sound coincidental that you’ve had the experiences through antibiotic reactions, is this something you’ve discussed with your doctor? Hopefully they can help connect the dots and determine what the cause of this could have been. I hope you’re feeling better and if you have any additional questions please feel free to email MSQuestions@mymsaa.org. Thank you for reaching out and take care. Angel, MSAA Client Services Specialist

  • Bonnie Barber says:

    I have had an MS “hug” 24/7 since 2008, diagnosed with MS in 2000, after first being diagnosed with Transverse Myelitis. The first month it was sporadic, then it became a constant condition. It is the worst symptom I’ve experienced from MS. After reading Dr. Wahl’s Minding My Mitochondria, I went on a vegetarian KETO way of eating two years ago and reduced my visceral fat to the lowest possible levels and that seems to make it less debilitating, although it never goes away – certain things trigger a serious exacerbation. I’ve never been heavy, but now I’m REALLY thin. Unfortunately, Solumedrol is totally ineffective for me. I’ve also found that SUGAR (grain, fruit, starch – corn, etc.) makes it much worse. I only take muscle relaxers for the spasms, since there is no real treatment for CPMS and I am extremely sensitive to chemicals. This is just a brief description to respond to this article, but I’m sure others with this condition can relate to all the profound symptoms that accompany this miserable ‘feature’ of MS. My Neuro told me that he’s recently had a lot of patients who are experiencing MS Hug when he had gone several years without anyone else reporting it.

  • Lisa Morris says:

    I have been having the MS hug about 75 percent of the time for 2 years. I didn’t know what it was either. My Dr. said it was anxiety or Fibromyalgia or just a part of the autonomic dysfunction that I have. I finally got tired of this and felt like there’s more to it. I found a neurologist who ordered me MRI. I have 2 suspicious lesions in the brain. Now I have to get another MRI for my spine and a spinal tap to confirm or rule out MS.
    One thing for sure is I’m tired of always being squeezed around my upper abdomen and my ribs. I hope my Dr will let me try some steroid or baclifen or low dose naltrexone.. And I hope it helps. not fun.. feels like something standing on my solar plexus all the time.

    • Angel Blair says:

      Thank you for reaching out, Lisa. I’m sorry for the challenges you’ve been experiencing and I hope your doctor is able to determine the cause of your symptom issues soon. Like you said, hopefully they can develop a treatment plan to help manage these in the meantime to help alleviate this. I wish you the best of luck with your care and if you have other questions please feel free to email MSQuestions@mymsaa.org or you can communicate with others living with MS on the MSAA’s online peer support forum called My MSAA Community, https://mymsaa.org/msaa-community/my-msaa-community-forum. Take care, Angel, MSAA Client Services Specialist

  • Terri Burton says:

    I was tossing and turning and trying to find a comfortable position to settle into. When I did, I had a sudden feeling of immobility coming over me. My neck, shoulders and arms felt like they were losing life and being “squeezed out” and going numb. I thought I was having a stroke. I jumped up and tried to work out the issue. It got more intense. I found it difficult to use a cell phone to call my daughter as I couldn’t raise my hands. As time went by I started regaining mobility. I pulled up the internet to figure out what I had just experienced. This was different from the two I experienced in the past 18 months. The first one lasting a few minutes, the second approximately 90 minutes. It felt like a vice grip around my mid section. Breathing was very difficult as it rendered me immobile. I haven’t been diagnosed with MS but do have an appointment scheduled with an neurologist. I can add tonight’s episode to the latest list of key points to talk about. Btw, I’m 57 and have been diagnosed with Fibromyalgia 15 years ago. This is a new one on me.

    • Angel Blair says:

      Thank you for reaching out, Terri. I’m so sorry to hear about the episodes you’ve experienced. I’m glad to hear you have an appointment to follow up with a specialist. If you ever feel the need for emergency medical attention due to these episodes please reach out to emergency response services in your area if this occurs. It can be worrisome not knowing what’s causing certain symptom issues and I hope by following up with the neurologist they can help determine the cause and provide you with some answers and guidance for your care. Best of luck with your appointment and take care. Angel, MSAA Client Services Specialist

  • Jennifer Kasper says:

    I am 43 years old, and I have had MS diagnosed since I was 24. I never understood when people would complain about getting the MS hug. I always assumed the MS hug was just the dull squeezing sensation that I get every now and again. Oh my goodness how wrong I was. I couldn’t help but laugh while reading all of these stories, because they sound like mine. I thought I was having a heart attack, on top of counting minutes in between contractions 🤗😂(I’m not pregnant). My husband rushed me to the hospital, and it wasn’t until I waited forever for all the tests to come back negative that it clicked and I said to my husband I think this might be an MS hug. I can’t wait until it’s over. Its awful. I’m praying for God to make it go away, and to never come back for any of us. In Jesus name Amen

  • V Mart says:

    I have had MS since 2017…. have been on DMT and doing ok. Occasional pain, dizziness and fatigue. My main issue until these last weeks was pain located in my left arm and scapula that finally responded to trigger shot injections and pain patches. I had also heard about MS hug and didn’t think it could be so severe. Recently I have had horrible tightness in chest/ pressure that led to several ER visits and a cardiac workup. So far all exams negative, so I have concluded this is MS related. I don’t know if a cold I had triggered this horrific problem . However I spoke with two neurologists I see and they are not convinced this is MS or possible relapse. Took oral steroids, issue still not resolved. I hope it goes away soon because the feeling of having a boa constrictor around your chest is nasty and makes me feel short of breath. MS sucks and unfortunately lots of physicians don’t know enough or care to take time to consider MS when providing medical care. They often think we have anxiety. If they could only experience a bit of what MS patients do they might be more empathetic.

    • Angel Blair says:

      Thank you for reaching out to the MSAA to share your experiences. I am very sorry to hear about the symptom issues you’re having and do hope they resolve soon. It can be very scary and frustrating not having all the answers and not being listened to appropriately by your medical team. You can try to obtain another physician’s opinion or see a different specialist, perhaps a pulmonologist to see if it could be an issue related to the lungs. I hope you’re able to find more answers and information for your care soon. If you have additional questions please feel free to email MSQuestions@mymsaa.org. Take care, Angel, MSAA Client Services Specialist

  • Jeremy says:

    I don’t know if I have MS, but I’ve been suffering from back and hip pain for about 8 years, and it seems like its getting worse. I am only 32. I can wake up in the morning and feel sore all over like I’ve worked hard all day. Sometimes by back tenses up so bad, I can’t even breath in, and it paralyzes me for a moment. I have had a craniotomy, so I don’t know if that could have anything to do with it. I’ve research the signs and symptoms of MS, and the prognosis doesn’t look too good. I’ve learned to just deal with the pain and power through it. It’s a nightmare

    • Angel Blair says:

      Thank you for reaching out Jeremy, I am very sorry to hear about your symptom issues and the pain you’ve experienced. I would suggest following up with your doctor about your symptoms, if you haven’t already done so, and if you have concerns about them possibly being related to MS you can ask for a referral to a neurology specialist for further evaluation. A neurologist would be able to help evaluate your symptoms and help clarify what’s causing them and if they’re due to a neurological issue. The doctor may also help create some type of treatment plan to help alleviate and manage your symptoms. Hopefully you can find answers for your symptoms soon Jeremy, and if you have additional questions we can try to help with please email MSQuestions@mymsaa.org. Thank you and take care. Angel, MSAA Client Services Specialist

  • Heather says:

    I am in a current MS hug state! This is my first and it’s lasted 6 days getting worse! It hurts to breathe or move and I feel like I have been hit by a train! The pain is in my ribs, chest, neck, back, and even after taking a deep breath a second wave aloof nerve pain radiates through my torso! I’ve never felt something so miserable! I did 3 days of steroid infusions and it has only gotten worse and I’m not on Baclofen just to get me through the pain and spasms enough til my body calms down! I have no idea what else to do, has anyone had severe pain last this long even after steroid infusions??

    • MSAA says:

      Hello Heather,
      Thank you for reaching out and sharing your story. If you are looking for others who may have shared similar experiences, please feel free to take a look at our free online peer-to-peer forum, called My MSAA Community at https://healthunlocked.com/mymsaa. If you have any questions, or just need someone to talk to, please contact one of our Client Services Specialists at (800) 532-7667, ext. 154 or via email at MSquestions@mymsaa.org.
      Thank you and best of luck with your symptoms.

  • Marsha Gravino says:

    Hi, I have been having symptoms of the MS Hug for probably a year and a half. I had never heard of this though before today even though I am currently seeing a neurologist who has said she doesn’t think I have MS. I’ve had a nerve test, several MRIs, an EEG, clinical tests and even a cardiac catherization at first because my cardiologist thought it could be my heart since I have episodes of arrythmia with SVT and a history of familial heart disease. I had no blockage and my heart seems to be fine despite the frequent arrythmia that I’ve had most of my life. These “hug” episodes started fairly mild, but have increased in duration, occurrence and severity lately. For me I can somehow feel it coming on and that’s hard to describe. My doctor described it like an aura. I feel like it starts in my head as far as knowing it’s going to happen without feeling anything, like a super brief flash of something not being right, but lately I do feel it starting more in my arms. That is where I feel it the most, both arms suddenly feel a very heavy fatigue and pressure, like a squeeze and a tightness. Sometimes I feel that tightness in my chest too and sometimes a little in my back, my shoulders and the back of my neck. When they first started they lasted seconds and now longer, 2-5 minutes with a slow subsiding. The best way for me to describe it is that it feels almost like getting your blood pressure taken and the cuff is squeezing both of my upper arms. I just turned 59. My doctor feels I am too old to be experiencing the first signs of MS. I did have a lot of crazy vertigo about 6 or 7 years ago that made me super dizzy and was very scary but that just went away after several episodes. These symptoms that I feel now are almost always after I am using my arms for something as simple as stirring a pot on the stove or putting dishes away. I find I am almost always using my arms beforehand. Yet I can work out frequently and not have an episode. One happened the other day when I bent over to pick up the cat dish. Just lately I’ve had a few back to back, 4 the other day and now two so far today and I even feel a sort of sick like weakness in my arms now as I type this. I have described it as when you have the flu or fever and you get that jelly like weak feeling in your legs, but this is in my arms. So strange. Does this sound like what any of you have experienced? Thank you!

    • Angel Blair says:

      Thank you for reaching out to the MSAA, Marsha. I’m very sorry to hear about the symptoms you’ve experienced, it can feel uneasy not knowing what’s going on and what could be causing certain symptoms, but you’re definitely not alone in this. I would suggest possibly getting a second opinion about your symptoms, to help clarify their cause and what can be done to help manage and address them. If you’d like to connect with others for feedback regarding this symptom issue, you can connect with others through MSAA’s online peer support forum, My MSAA Community, https://mymsaa.org/msaa-community/my-msaa-community-forum. Here you can talk to others about your symptoms to see if they have experienced similar feelings. I hope you can receive more answers and guidance from your medical team soon Marsha, and if you have additional questions please feel free to email MSQuestions@mymsaa.org. Thank you and take care, Angel, MSAA Client Services Specialist

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