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!
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 !
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
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??
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
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.
Sounds like me. I have Gone to several doctors because of The excruciating pain under my left rib cage which feels like it is swollen and they keep telling me there’s nothing there so it must be the hug. . I am now going on a hug for over five weeks. It’s so scary and uncomfortable. Sorry to hear about yours
Yours were the only comments I saw of constant “hugs”. I’ve not been diagnosed with MS yet, but it’s either that or I had a stroke at some point. Anyway, I’ve had what I’ve been calling rib cramps every day (pretty much) for the last four months now. Sometimes pretty sore but not super painful like a lot of folks are saying…… so very strange
What is CPMS?
And have you found any relief from your chest discomfort since you last commented?
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.
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
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.
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
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
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.
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
I am in my second week of constant MS hug symptoms.
I am struggling to breathe and have almost constant spasms and pain in my chest and ribs. I take baclofen 10mg 11/2 three times a day but this isn’t helping. My gp has give me penicillin for a chest infection as I am wheezy (phone consultation due to COVID) I have had this before a few years ago and my gp sent me to A and E but all the tests where ???? any advice would be appreciated x
Thank you for reaching out to the MSAA, Lynn. If you’re continuing to have MS hug symptoms, and the medication you’re taking is not helping, I would suggest following up with your neurologist at this time, if you see one for your MS care, or following up with your GP again. They may be able to recommend a different treatment to help manage the symptoms or do an evaluation to help assess the symptoms further to determine if anything else is occurring. Hopefully the doctors can help you manage these symptoms Lynn, and if you’d like to talk to others living with MS, you can do so on MSAA’s online peer support forum My MSAA Community here, https://mymsaa.org/msaa-community/my-msaa-community-forum. And if you have additional questions please email: MSQuestions@mymsaa.org. I hope you’re feeling better soon, Lynn. Thank you again for reaching out and take care. Angel, MSAA Client Services Specialist
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
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
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??
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.
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!
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
Hi, i think i have this ms hug although as far as i know i don’t have ms. I woke up with pins and needles in my hands and feet on friday. Since then i have developed a numb feeling every where except my upper arms and shoulders. I have the tightness all around my torso and it is constant. Since Saturday, thats 5 days of it! I’ve been to my gp. Had bloods taken, and since the numbness has spread i have been to a and e. The gp said if it hasn’t gone away in TWO WEEKS to go see her. Is this normal? I feel like one of those bags that gets all the air sucked out with a hoover. And the pins and needles are driving me crazy. Could this be ms? I’m 47.
Thank you for reaching out, Ishy. I am sorry to hear of the symptom issues you are experiencing. MS can cause a variety of different symptom issues that can at times mimic other health condition symptoms, sometimes making it difficult to diagnose. Numbness and the MS hug-type symptoms can be seen with the disease–if you are concerned about these symptoms I would suggest trying to follow back up with your doctor, even though they gave you a two week time period to see if they subside, it sounds like they’re worrying you. You can also try to get a second opinion with a different doctor or specialist–if you have concerns about MS the doctor to see would be a neurologist. Hopefully between your general doctor and a specialist’s evaluation, if needed, they can help to clarify the cause of your symptoms and help to manage and treat them. I would suggest contacting your general doctor to let them know that your symptoms have worsened and hopefully they can help address this or refer you to a specialist if needed. I hope you’re feeling better soon and I hope you find answers for these symptoms. If you have additional questions we can try to help with please email MSQuestions@mymsaa.org. Take care. Angel, MSAA Client Services Specialist
I’m having a hard time getting diagnosed..I’ve had several doctor’s tell me they believe that’s what I have…my MRIs come back with lesions..I have these crazy things go on with my body…read about the symptoms and my hell I relate to most of them….but I keep getting treated for migraine… vertigo….. Anxiety and depression…. Blood pressure….none of that stuff works…tired of being a test dummy….and a pin cushion….don’t know what to do….first started 2012…been what feels like suffering ever since…just keeps getting worse…but it’s nice to read the comments…helps me not get so upset when I have some understanding of what’s going on….
Hi Chris, thank you for reaching out to the MSAA. I am very sorry to hear of the symptom challenges you’ve been experiencing and that doctors have not provided more answers and treatment to address what’s causing these. It can be extremely frustrating not being heard and not having answers for what’s going on in your body. If you haven’t done so already, my suggestion would be to see an MS neurology specialist at this time for further evaluation and follow-up of your symptoms. If you’ve seen one in the past it may help to get another opinion of your care and see if they can help clarify the cause of your symptoms to help determine if they’re related to MS. If they are not, they may be able to point you in the direction of what else it could possibly be and if you need to see a different type of specialist. I hope you’re able to find answers soon to receive help to manage and treat your symptoms, Chris. If you have questions or would like referrals to MS specialists in your area please feel free to email MSQuestions@mymsaa.org. Thank you again for reaching out and I wish you the best of luck with your medical care. Take care, Angel, MSAA Client Services Specialist
Diagnosed in 2007; and had never had a hug since February. Then all hell broke loose. Severe pain on the left side directly under my rib cage; but deep breathing ( in addition to feeling like I’m being stabbed with each breath, cough, sneeze… oh god… the SNEEZE) pain also radiated to my neck. First thought was I was having a heart attack. Then I thought my liver was acting up (I also was blessed with autoimmune hepatitis ???? ) so I went to the ER. EKG..normal Cardiac enzymes…normal. Liver function tests.. normal. Abdominal X-ray, chest X-ray, abdominal CT and abdominal ultrasound, ALL NORMAL. Just as I was sure I was dying from some “never been heard of before” rare and exotic disease; it hit me. The HUG!!! The miserable, painful, cruel “wouldn’t wish it on my worst enemy” hug, I started with the hug Feb 7; ironically the day after my birthday; and I’m still in excruciating pain. I dread feeling that tell tale tickle in the nose that is the preamble to sneezing; as sneezing is the worst pain I’ve EVER had. I’ve birthed a 9lb baby, recovered from extensive abdominal surgery, and still this hurts worse. I’ve read horror stories of people who have suffered with this torture for many months or years. I can’t imagine not being able to take a deep breath, coughing or sneezing without feeling like I’m being drawn and quartered for years. I’m a month in; and I’m already cracking. I’m on gabapentin which is no help. For anyone who says MS can’t be painful, I wish they could experience just 5 minutes of this. They’d understand just ONE of the painful things about MS. We truly are MS WARRIORS; because we go through hell, and manage somehow to bounce back, usually with a sense of humor and resiliency that only the most seasoned fighter can attain.
MS hug is so real and very painful as I’m experiencing this burning pain in my chest and hoping it doesn’t spread and render me immobile, certainly scary with all this Covid stuff. It started this afternoon now 1:30 am and I’m up once again as sleep is impossible at this point but feeling hopeful since I’ve been reading some some of your comments and knowing I’ll get through this eventually, baclofen helps and going to watch a movie to help Me from grinding my teeth and distract me for a while. Keep fighting on MS Worriers ????
i am 65 years old and diagnosed with MS at 49. I am mostly A symptomatic not on a drug protocol and manage most of my symptoms myself. I do get MS hugs however. I thought I was having a severe muscle cramp in my abdomen directly under my ribs. I felt this long lump proturding from my stomach. It was debilitating and extremely painful. I am in good shaped and do a lot of Pilates. I thought that as what the cause was and that I had pulled a muscle. Then I had another taking a bath and again laying by a pool a few weeks later. I was finally told that they are MS hugs. I literally can’t move for at lease 10 minutes and have to breath deeply as if I am in labor again while putting pressure on the area. They can last sometime 45 minutes with lingering pain for a day or so. I have found that drinking a liquid electrolyte along with salt and a banana helps calm the area for a while. This doesn’t stop them, but just helps live with them when they occur.
I have had the MS hug before and it would last a few days; mostly just pressure in the torso around the bra / chest area and slightly lower; it would be uncomfortable but bearable; i have been diagnosed since 2009 and went off all meds in 2019 after severe anaphylactic reaction to the shot; i have gabapentin on hand and prednisone if i have a relapse which i am having at this time; it has been since May 8th when this started; i went to my primary care doctor tuesday the 11th because i wasn’t positive this was the infamous “hug” i actually have lumps below my ribs which as the Dr. told me are my muscles spasming when you push on them they move and sometimes when i’m calm and lying down you can’t feel them at all; sitting is the worst but it’s so hard to concentrate on anything; i feel best when i am walking early morning and standing; staying busy has always been my go to when i have any type of symptom or relapse; just wanted to share the muscle tensing and spasms in the lower rib cage as it can be scary. stay strong MS peeps.
I was diagnosed in 2001 after many years of vertigo & balance issues, I was on Avonex for 19 years but have been off all DMT for 3 years and no issues at all until the last couple of months and am having MS Hugs ( I hope). They are like a huge Boa around my upper chest under my arm pits and all the way around and also my arms are momentarily paralyzed, and they literally take my breath away. So now I know my MS is active again in some manner. The last 5 MRI have had nothing new and nothing active, but I’m sure another one is due now. Thank you for this section as I hoped info or others experiences would be on your site.
Thank you for reaching out to the MSAA with your comment, Wayne. I am sorry to hear of the symptom issues you are experiencing. Hopefully by following up with your doctor about your MS, they can help evaluate this and identify ways to help address it. You can also talk to others living with MS through MSAA’s online peer support forum, My MSAA Community, https://mymsaa.org/msaa-community/my-msaa-community-forum. I hope you’re able to find help for these symptoms soon. Thank you again for reaching out and take care. Angel, MSAA Client Services Specialist
I was diagnosed with m.e four years ago but I am thinking it’s something else but no doctor is listening, I have loads of different symptoms but for quite a while I’ve been having this strange thing happen, on left side chest and around ribs like heavyness effects my breathing it’s like a tightness and I worry it’s my heart or lungs but every time I go to doctors things are always ok, this feeling lasts for about two to three days I’ve had two episodes in the last week once it’s gone it feels such a relief, it’s hard to explain what it is but came across m.s hug and was wondering what people thought, I get awful fatigue terrible nerve pain memory is mush can’t remember certain words pain mostly on left side heart beat tinnitus
Thank you for reaching out, Kelly. I am sorry to hear of the symptom issues you are experiencing. Have you followed up with a neurologist about these symptoms and your concerns? Hopefully they can help determine their cause and find ways to help manage them. If you’d like to talk with others living with MS you can do so on MSAA’s online peer support forum, My MSAA Community, https://mymsaa.org/msaa-community/my-msaa-community-forum. I hope by following up with a specialist they can help address these symptoms and I hope talking with others can offer support as well. Thank you again for reaching out. Take care, Angel, MSAA Client Services Specialist
I dont know if this has happened to anyone else, but I have taken an ms hug 3 times before over the years and every time it was brought on by sneezing. I took one yesterday while in a shop on my own. (first time in weeks I was, i ve usually had someone with me lately) I sneezed and nearly fell to the floor with the pain which went from my chest right down to my hip. It was so debilitating it was like having a heart attack. As I’d had a few before I knew to try my best not to panic myself or anyone around me. I was frozen to the spot for a while then luckily there was a chair in a quiet corner of the shop which I eventually made my way too, without any fuss. I sat there for ages then made it to a coffee shop and sat for over an hour. Then I was able to tell my husband what had happened and i rested for the remainder of the day.
Thank you for reaching out to the MSAA, Paula. I’m very sorry for the experience you had with these symptoms. Have you discussed this with your doctor at this time as well? If you’d like to connect with others to hear of their experiences with MS symptom issues, you can do so on MSAA’s online peer support forum, My MSAA Community, https://mymsaa.org/msaa-community/my-msaa-community-forum. Here you can talk with others living with MS to gain some additional feedback and perspectives on symptom experiences. I hope by working with your doctor you can find ways to help manage this symptom also. Thank you again for reaching out and take care. Angel, MSAA Client Services Specialist
My hugs are awful. Thankfully they tend to be infrequent. The first one was a tight feeling in the epigastric area, followed by intense nausea. Soon the pain revealed itself to be an extreme spasm involving my whole diaphragm., but nausea subsided. Then the burping, as the diaphragm was shoving trapped gas in any direction possible. Following that, the slow spread around my ribcage, primarily on the sides. This turned into the boa constrictor clamp down. The diaphragm lessened as the rib squeeze escalated. Thankfully it lasted only 5 minutes, and I knew what it was because my friend had them.
Unfortunately, I have had this happen regularly. Sometimes it lasts, on and off, for hours. The pain is such that I’d rather give birth. I also have another gift from MS, Trigeminal Neuralgia.
I have found that both are worse when I do not get enough sleep. The TN doesn’t let me get to sleep, a vicious circle. My Neurologist, and others,, have said there are no abortive measures. I have found that an extra dose of Baclofen and a heating pad are useful. I’ve had oral bursts of steroids for this, as well as infusions when the overall picture is indicative of a flare-up.
These hugs are debilitating and exhausting. When they hit I cannot ontrol my response; I’m moaning, cryig, changing positions from fetal to sitting in tripod, deep breathing when possible, and desperately pleading with God to help me.
I keep hoping that someone will figure out an abortive treatment. These are hell.
I have such a similar experience with you. Totally relate.
Just diagnosed with ms. Over the years had lots of strange symptoms. No dr ever considered ms even though i have multiple autoimmune diseases. The ms hug the year prior to my diagnosis was excruting! It lasted 3 months day and night and felt like i was being stabbed. I couldnt breathe. Went to ER multiple times, thinking it was a heart attack. Drs did troponin blood test and sent me home in pain. Told me to follow up with primary dr which was useless. Since then, i was diagnosed with svt arrythmia . This is more scary because now i will wonder if its the ms hug next time or a actual heart attack. This has been so difficult and stressful. Good luck to all in their ms journey.
I was dxd w/MS in 1988, SPMS since 2000. I’ve only had ‘hugs’ for the last 6 or 7 years. Oh my, they really, really do feel like a heart attack – as if your heart is being squeezed hard, the pain is horrible. I take Tizanidine (a strong muscle relaxer) now – it really does work. However, it doesn’t just work on your rib muscles, every muscle in your body is relaxed and you are completely overcome with sleep, deep sleep. You have to take them just before bed. During the daytime, I take valium (another muscle relaxant) which doesn’t make you wobbly on your feet, or send you to sleep but it is very addictive.
I think we must rename this symptom from ‘hug’ to ‘crush’, to try and alert others as to how painful and completely debilitating it is. Best of luck to you all, Carol
This is encroaching. I have to heard of the drug. Currently in the Er for them to rule out ms hug or heart attack.