What is the MS Hug / Girdle Pain / Girdle Pain Sensation / Squeeze ‘O’ Death?

by Sara on April 29, 2011

What is the MS Hug?

Grey’s Diagram Of The Body’s Intercostal Muscles

Lately I have had serious trouble with something frequently called the MS Hug (also known as Girdle Pain or sometimes Girdle Band Sensation). What is the MS Hug? There are a couple of theories  on what causes this. One theory is that it is just muscle spasms like all the other muscles spasms experienced by people like me. And by “muscle spasms” I mean awful unbearable crippling pain (OK it’s not this bad every single time). The more popular theory is that the spasms are caused  by lesions on the spinal cord – I’ve never had an MRI on my spinal cord so I can’t tell you if that could be a factor for me. It can be an exacerbation or a psuedoexacerbation. In my case I’m not sure. But I’m going to try to give you all the information I can about this abomination. Please remember, I work with computers and have no medical background.

My first experiences with this were extremely painful, but slowly I determined that caffeine, stress, and heat were triggers for all of my muscle spasms, especially the ms hug. I cut out caffeine altogether, tried to use yoga and perspective to control my stress, and I try very hard to stay out of the heat. It can hurt for a few seconds to several weeks. It can hurt a little or can be so painful that I end up in the ER because intravenous Valium is my only hope. Sometimes, even that doesn’t help. The pain can be unreal. It can be unbearable. It can be so bad that you do not wish to live through it. My recent episode was the worst it has ever been and drove my blood pressure to incredible heights.

This particular episode lately was triggered immediately by the stress of Novartis telling me that my insurance company had refused to cover any Multiple Sclerosis medication due to cost. Just to be clear, we pay for the highest level of insurance just to make sure we have the maximum amount of coverage and there are no prescription price limitations on our plans.

There are different types of pain. When I talk to my husband about it, I refer to them as “flavors” of pain. But technically speaking, neurologists will usually call this a “parasthesia” which means that it’s an abnormal sensation caused by neuropathic pain. To me, this makes no sense. When I randomly feel like a grease fire is on my hand that is an abnormal sensation caused by my brain. The MS Hug, or perhaps let’s call it the “MS Grip Of Death” clearly involves pain that is caused by muscles gone nuts, even if they have gone nuts because there are wonky nerves between the brain and muscles.

My daily treatment, per doctor’s orders, went something like 10 10mg of Valium per day, spread out over 5 doses of 2 pills each. Up to 6 7.5mg Loritab per day, sometimes 10mg Cyclobenzabrine, sometimes 0.125mg Hyoscyamine, sometimes 2mg Hydromorphone.  Between 2 ER visits I was given mostly Valium, Solumedrol, and Morphine. After finally believing I had beaten this episode of the hug, the pain would return and I would have to take pills again. When the exacerbation finally ended, I stopped taking the pills altogether. Normally, I can feel the hug coming on, take a couple Valium and it will go away. At worst, it comes on full force, I take some Loritab as well, or maybe Ambien and I’m better in the morning. Or perhaps I may be on a couple Valium a day for a few days in a row. This was far worse than my previous experiences with this symptom.

I was not prepared for the fact that I would have to go through opiate withdrawal from this episode. It has been extremely difficult, to say the least. It brings back the darkest parts of my life in full color or just leaves me with the blackest possible mood for no reason. Every stupid thing I have done, everything I have done to ever feel guilty about haunts me – from fights with my family to being hurtful to former friends. Every instance where I’ve let a friend take advantage of me or abuse me replays over and over. After a few weeks, I think I’m finally past it and hope to never, ever have to go through either the hug or the withdrawal again.

So, what is this MS Hug thing?

The MS Hug involves some or all of the intercostal muscles going into spasm – these muscles hold your ribs together and make your torso flexible. The image at the top of the blog post shows these muscles – the most important thing to remember is that they are located around the abdomen and are largely in between the ribs. Maybe this is different for everyone, but for me it typically starts on one side and at worst ends up wrapping completely around me from just underneath my breasts to the top of my hips. My muscles often feel like river pebbles to the touch. Clothes get tight because the muscles push out, but the muscles also push in, so vomiting ensues and I can barely breathe more than small gasps of air. You may ask if this is a stabbing, throbbing, or squeezing pain. It’s all of the above. The most common description is that you’re being squeezed or crushed to death.

MS Hug Severity Chart

I have heard that Dr. Oz spoke about this in the past on the Montel Williams show. From what I understand he stated that this was the most common cause of death for those suffering from MS – suffocation from the MS hug. To the best of my knowledge this is completely untrue – there are no reported deaths (that I can find) from suffocation due to the MS hug. However, as high as my blood pressure rose from the pain, I don’t doubt that it could put you in a life threatening situation under certain circumstances. Suffocation? No. Feeling like it? Yes.

The intercostal muscles fill up the spaces between the adjacent ribs. They are arranged in three sets, external, internal and innermost internal, eleven pairs of each.

There are three principal layers

  1. External intercostal muscles, which aid in quiet and forced inhalation. They originate on ribs 1-11 and have their insertion on ribs 2-12. The external intercostals are responsible for the elevation of the ribs, and expanding the transverse dimensions of the thoracic cavity.
  2. Internal intercostal muscles, which aid in forced expiration (quiet expiration is a passive process). They originate on ribs 2-12 and have their insertions on ribs 1-11. The internal intercostals are responsible for the depression of the ribs decreasing the transverse dimensions of the thoracic cavity.
  3. Innermost intercostal muscle, the deep layers of the internal intercostal muscles which are separated from them by the neurovascular bundle.

Both the external and internal muscles are innervated by the intercostal nerves and are provided by the intercostal arteries and intercostal veins. Their fibres run in opposite directions

All muscles are in a constant state of readiness (tonus). Although muscles work in pairs and groups to create movement a muscle can only contract (pull) while the opposing muscle relaxes. However, tension is always maintained in both muscle pairs (tonus) to maintain stability.  Tension maintained in the relaxing muscle prevents the contracting muscle from overreacting. When the nerve impulse to the muscle, or muscle group are interrupted the relaxing muscle or muscle group receiving the nerve impulse to maintain its opposing tension will no longer work to maintain the equalizing balance and its opposite partner will then over-react causing the symptoms known as MS Hug.

MS Hug Treatments

MS Hug Treatments

Here are some ideas for alternative therapies to end the pain from an active hug (and my take on them) from what I personally believe to probably be most effective to least :

  • Loosen Your Clothing (Yes. Or just lose it altogether. Seriously. With over 75% of MSers being women, I’m just gonna say take off your bra, hands-down. Men reading this will probably agree, but not necessarily for the same reason)
  • Warmth (A heating pad helps, except when the cats demand it back and I wake up with cat scratches all over my stomach. A hot bath helps sometimes, and sometimes not.)
  • Fluids (Maybe – I’ll just throw it right back up. Better than dry heaves? Although if the pain is not too bad, it’s sweet when Will makes hot chocolate for me – it’s like a heating pad on the inside)
  • Pressure Or Massage To  The Affected Areas (I can usually only tolerate this on my back – the pain is too great anywhere else.)
  • Ibuprofen (HAHAHAHA – no. This started for me when I was already on 80 mg of Baclofen per day for spasticity, so that never helped me. Valium (Diazapam), sometimes mixed with Loritab (Hydrocodone) is my only solution. Unless you’re very much not like me at all. I have Lyrica, but I haven’t had a chance to try it yet. I have also heard of Lorazepam, Xanaflex, and Neurontin. Botox is a newly approved treatment. Anecdotal evidence suggests that marijuana helps with all muscle pain, other pain, and lots of other MS problems.)
  • Analgesic Creams: (This sounds like a joke, but who knows.)
  • Deep Breaths Through The Nose, Exhaled Through The Mouth (Who can breathe deeply when you can’t breathe deeply?)
  • Creative Visualizations: Pretend It’s Not Happening Or Is Being Relieved However You Wish (OK – whatever – I started going into shock last time and only stopped shaking for about 20 minutes while the morphine worked – feel free to give it a try though!)

Here’s hoping that if you experience this, that this post will help you understand it better. Or if a loved one is experiencing this, you will understand better what they are going through. The pain can be unbearable, and conventional treatments can be dangerous.

If your treatment involves narcotics, perhaps your experience will be different than mine. Be cautious. Ask questions. Almost all of the drugs that I was on for this episode noticeably affected my ability to breathe even when I was unaffected by the hug.

Be careful and good luck to all.

 

Have you ever experienced the MS Hug?

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{ 58 comments… read them below or add one }

Juli June 18, 2012 at 9:15 PM

Dear Sara,

I just wrote you a long email and the internet ate it. I get almost exactly the same type episodes as you have described. Thank you for sharing your experience. NO ONE has spoken about this severe form of the hug and I have read a lot and been on websites. I get the blood pressure spikes too and have had many visits to the ER some by ambulance. It is terrifying. In addition I get paralysis in the rest of my body when it happens….

The positive thinking advice in the chat rooms (one woman told me to try jogging and I was using a power chair at the time) is enough to make one feel crazy. And this is only one aspect of MS. It certainly is one of the scariest.

My cat and I fight over the heating pad. Heat, not enough sleep and stress are my triggers. I was having these episodes so badly three years ago I lost 60 lbs. in 2 mos. and really did have one foot in the grave. No one tells you about the agony — only the disability and maybe numbness and tingling and fatigue.

I look totally normal right now. Even my GP tells me how great I look (I look way younger than 54). I just bite my tongue and tell him he looks marvelous too…I’ve had this since I was 11. It’s maddening sometimes.

My husband read this and said Yup, that’s it…He has been with me during every ER trip. Thank god. And this is just ONE aspect of MS. Let’s not even talk about short term memory or lack thereof.

Thank you so much for being so articulate about what happens during your attacks…flare and exacerbation are too nice a word for it. And as you know, there is so much MORE that goes with it.

This was so validating to read. I can’t tell you how much relief I felt to read these symptoms in print. I feel exonerated somehow and a little less freakish.

I hope to hear back from you but imagine you will get tons of mail about this. Thank you again. Ativan and Lortab work for me too but the attacks require IV Demerol and Ativan…large amounts…I watch cartoons on the ceiling for awhile.

peace love and wellness to you

Juli Michaud

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Sara June 19, 2012 at 10:14 AM

Cats really can be selfish over heating pads!

Thanks much for your comment – it makes me so happy that this article has helped you in some way. You are so very right that it’s hard to find any real information about the MS Hug. Even neurologists (even MS specialists) don’t truly understand the experience. They are aware that it’s a “tightness around the chest area” but that doesn’t come close to describing it!

Avoiding caffeine has probably been the best thing I’ve done to prevent these, but some days the hug just randomly hits me for no reason at all. I mentioned this is my last post, but I keep diazepam (Valium) and hydrocodone (Loritab) on me at all times just in case it hits.

Luckily, we live so close to a hospital that I’ve been able to avoid the ambulance. However, when it happens I’m sure you know that there’s no chance at all of successfully driving a car. I’m very grateful that my husband has always been there for me, no matter what hour, to help me.

I sincerely hope you continue to find ways to relieve this. I enjoyed hearing from you!

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Nene September 14, 2012 at 3:02 AM

Hi from Australia!
I have suffered (& I mean suffered!!) from this symptom since an MS attack 3 months after my daughter was born in Jan 1999.No Drs including my (excellent)Neurologist knew what it was.Eventually after trips to pain clinics & many doses of Oxycodone I met a pain specialist who put me on morphine sulphate sustained release.Of course,these drugs are monitored very closely here & I have maintained a dose of 75mg per day for over 10 years.Smetimes the pain is so bad that I will allow myself to take an extra tab with some Ibuprofen+Codeine (called Neurofen Plus here.I have just discovered the relief from heat packs you mentioned which I had previously avoided due to heat making my MS symptoms worse.I am presently searching the internet to try & buy clothes that I can wear without discomfort as I`m off on holidays with my husband & 2 children & it`s not really practical to wear night dresses all day as I do at home.I have put on a considerable amount of weight which my Drs are nagging me to lose-ironic as the drugs they prescribe)incl my psychiatric ones)are known to cause weight gain & I really cannot do my daily walk as I did for years & was an ideal weight.After all that about me, I just wanted to tell you that your explanation & advice re the intercostal muscles etc is brilliant-the best I`ve read in my never-ending search for more info about this dreadful symptom.I am going to print it for my Neurologist & other Drs to read.Thank you so much & I wish you a long break from the dreadful “grippies”
Nene

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Sara September 14, 2012 at 1:18 PM

So glad the article was helpful! I am amazed at how few neurologists seem to understand much about “the hug.” It can truly be so awful – my heart goes out to you for how much you’re living with. As for clothes, I tend to buy lightweight, loosefitting, soft clothing just in case. When it is very bad, I’ll go straight to very soft, very lightweight pajamas as anything remotely tight around my middle makes everything feel so much worse. I hope you find something you like for your trip and have a fantastic time!

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Cactusun April 22, 2016 at 10:00 PM

I was diagnosed with PPMS in 2009. By early 2010 I felt I had breathing issues and I went to my neurologist & he told me that I I couldn’t have breathing issues. So after a few more months of feeling strained and having difficulty even reading my son a book at night, I made an appointment with a pulmonologist. After taking several breathing test I was able 2 factually say I have a breathing problem as my lung capacity has been diminished. However it wasn’t severe enough to be given any treatment. I was told by the pulmonologist at the time it was probably due to the MS hug. I was told not to worry about it and that the MS hug is pretty harmless. So I didn’t. I thought it was just another symptom that would be bothersome but it could be tolerable. Another year went by and my breathing became more strained and another year went by where I felt I almost made my husband take me to the hospital. I went to see the pulmonologist again and this time My compacity went from 85% down to 65% and I was diagnosed with restrictive lung disease. But because my oxygen level was so good he said that there was no treatment available and I would just have to deal with it. I thought, but my breathing is getting worse where I feel like I’m gasping for breath. But the doctor had no response. Then I started to wake up during the night gasping for air and I had to start sitting up while I slept so I could breathe. The neurologist at the Mayo had me take part in a sleep Clinic and they found out that my breathing was affected during the night and I was bad enough to get a BiPAP machine. my lung capacity was found out to be 46% now . I had just gotten the BiPAP machine and hadn’t even taking it out of the package when the breathing problem that I supposedly didn’t have and that Ms hug that was supposed to be so harmless almost suffocated me. I woke up during the night and I was gasping for air literally. I could not feel my lungs inflate or deflate. My husband immediately got the BiPAP machine on me and if it wasn’t for this machine I believe I would have suffocated because I could not get any air in or out of my lungs. We called the ambulance and I went to the hospital. After running tests, the neurologists concluded that it was the muscles in between my rib cage – the MS hug. That I had such a strong muscle spasm that it encased my lungs so that they could not inflate or deflate. This particular spasm lasted for 24 hours and lessened as the days went on. By the end of my Hospital stay we were able to adjust my BiPAP machine and the spasm relaxed enough that I could go home. I now sleep with my BiPAP machine on every night. I have had a few episodes during the night that I still have to sleep sitting up because the muscle spasm is so strong that even though I have the BiPAP on I still can’t get enough air. I have not had to wear the BiPAP machine during the day, however I still get minor spasms that my speech is affected or my breathing is more shallow. But nothing like that night. I was told in the hospital that the MS hug is really not a big deal and that I probably would have just passed out but would have regained consciousness once the spasm released. However I don’t find that very comforting or very scientifically factually based. When I asked if he had medical proof of this his response was that it was a theory. I was told they don’t know how to treat Ms hugs but they believe a couple drugs like Baclofen might help. Honestly, I felt they were too relaxed about this Ms hug. Unfortunately I have a sensitive reaction to Baclofen and can only take a very small dose one time a day. Right now I am managing with my BiPAP machine at night. But I really do feel that the MS hug is misrepresented in doctors offices and on websites. And that it is not given the attention that it deserves. I should have been watched by my doctor when I increasingly told them my breathing problems were getting worse. I was wondering if anyone else had Ms hugs as severe

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Shirley December 29, 2012 at 4:30 AM

Mine is perminently there, I suffer daily with it, it is worse on my left side at the moment and that’s where they doind the possible beginnings of a spinal lesion two years ago on a MRI, haven’t had one scince,I am on Lyrica which has no effect whatsoever on the girdle (hug is not right). Thanks for your post, it helps me a bit reading it.

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Sara December 29, 2012 at 7:18 AM

Thank you for your comment, Shirley. I’ve heard of others who suffer permanently with this as well, and I am interested to hear more. How severe is your pain and does it fluctuate? Have you found anything that relieves it at all?

I wish you all the best and hope you find something to prevent this.

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Shirley December 29, 2012 at 7:40 AM

The pain soes fluctuate yes and heat and stress makes it worse, I have yet to find something to help with it, I have a usless neuro as well so I cannot count on him for help. At the Moment it is bad on one side but less sore on the other, but we r having a really bad heat wave. I will keep you posted.

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Sara December 29, 2012 at 7:50 AM

Where are you located? And have you ever tried baclofen? Baclofen didn’t help me, but others have told me that it helped them. It is better for permanent use than diazepam.

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Shirley December 30, 2012 at 1:50 AM

I am in Johannesburg and jab not tried baclofin, I doubt my current neuro would let me. But I am changing neuros next year.

baileyryan December 30, 2012 at 9:45 PM

I have to take lorazepam when it gets really bad. For some strange reason it is the only drug that works in that area. I take baclofen for overall spasming. If it is severe enough for a trip to the ER, lorazepam and demerol control the symptoms. It’s awful…

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Tara April 9, 2013 at 4:01 PM

Struggling very hard with this. Nicely put. I have chronic pancreatitis so I cannot take any pain meds outside of ibuprofen. No morphine, codeine, nothing. I hate the term MS Hug. Loved your term of “MS Grip Of Death”

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Carol Smith April 18, 2013 at 2:40 AM

I was dx’d with MS in 1996. Had my first “hug” about a week ago and it was very frightening, not to mention extremely painful. Bone-crushing painful. I was just watching tv and it startd up. I don’t even know what brought it on. I took a diazepam to help me relax and went to sleep. The next day I was so sore from that nice little “hug” it was hard to move around. I haven’t yet told my neuro about this as I’m having trouble getting an appt to see him. This is a new symptom for me. But it joins a host of other MS symptoms, mainly weakness, spasticity, and fatigue. I agree it is the grip of death. It’s very frightening. Curious to hear what my neuro has to say about it.

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Dawn M Kelm April 27, 2013 at 2:38 PM

Thank-you so much. I thought I was going crazy. I am overweight, out of shape. All that I can do is go to work and go to sleep. I only work 3 to 5 hours a day. This MS hug would hit me at work, make it hard to drive home. I take most of drugs listed, because I have D Disk D . I also take drugs for my back .I remember going to my first support group 2001. My first question was what is normal MS ? I now teach the group. Thank- you again Dawn Kelm

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debra May 11, 2013 at 1:31 PM

Hi i am 37 years old i have not yet been dx with ms i have a lot of the symptoms including the ms hug at first they said it was my galbladder swelling then it was the i dont know then it was pulled muscles when i jave the ms hug it is on my right side just under my breast on top of the ribs mine are so bad i cant move or breath and it is visible to other people it looks like there is something under my skin that is going to explode please help

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Sara May 12, 2013 at 11:35 AM

I’m certainly not a medical professional, but this sounds identical to my experiences with the start of the MS hug. Try to figure out what triggers it and avoid that if possible. In the meantime, if you can find a local MS group in your region, then maybe they can help to guide you to a neurologist that can give you a proper clinical diagnosis. Don’t wait for it to happen again – be proactive. My heart goes out to you. I hope you find the help you need soon!

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debra May 12, 2013 at 1:03 PM

I have been dealing with that for a couple of years but it has gotten way worse .i do go to nuero on the 3rd of june i cant wait i know it is a long process but i just wanna know whats wrong with me .i walk around sometimes in a daze i stumble over words ive said all my life ,i forget the littlest things .sometimes i forget how to swallow i never sleep and list just goes on and on thank you so so much for taking your time to listen and respond it means the world to me ms runs on my dads side of the family my grandmother had it my dad had it before he passed away 2 uncles and one aunt.i of course do not want to have it but i would love an answer of why my legs vibrate and i hurt all the time.do you know if a venous angioma is a lession they found one in my head last year when gdoing xrays .i have very baf bilateral. Tmj ivthought that was why my ears sound funny and my face gets shocked all the time any info anyone has would be great and thanks again

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debra May 15, 2013 at 1:16 PM

Anyone have suggestions…..u to have the ms hug however i have not yet been diagnosed.ive been told it was my galbladder to a pulled muscle it happens under my right breast in the rib area it looks like a big bubble it tightens up on me and takes my breath i never know when its coming it feels like a bad contraction .i goTo neuro on june 3 i have been having alot of issues at times i feel drunk i catch my self not being able to say certain things i feel like overwhelmed. By the smallest task which is not like me i have had moments. Lately where i just fall out i do not think im passing out because my eyes are open and it dosent last very long but anyway my legs have been killing me i mean so so bad please can someone tell me what to do please….i have a hard time with steps now for sime reason …i can walk up them my legs feel real heavy but i can do it the hard part is walking down????i get so so shaky you can see my legs tremble i just do not know what to do my gp saud he wants to wait on the neuro report mean while. Im in great pain and scared to death my back feels twistes when i sit to go to the bathroom my leds shake so bad i hear a loud noise un my ears my legs feel electric abd my face does too.my hands are so shaky at tine i cant hold things is there anything i can do ubtil june 3…..

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karyn walker May 30, 2013 at 4:03 AM

Hi Debra, I was MS? 11 years ago. I was unwell with leg weakness, burning pain, numbness and fatigue. Was sent to a Neuro who sent me for MRI of Brain…….i had 5 Periventular white matter lesions and was told could be early stages of MS but didnt fit the criteria for definate diagnoses as i needed more proof of another attack and another lesion. I had MRI 6 years ago but no more lesions. I was diagnosed with Fibromyalgia 3 years ago because i was getting pain in more places. Im still not convinced i dont have MS as i feel like im gettin worse. I have that feeling under my breast as well and it does feel like a contraction, i have never mentioned it to my doctor but maybe now i will. Would love to here back from you. Im 48 years old

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debra May 30, 2013 at 1:43 PM

HI KARYN WALKER ,I AM 37 YEARS OLD I HAVE NOT BEEN DIAGNOSED YET HOWEVER MS RUNS ON MY DADS SIDE OF THE FAMILY …MY DAD HAD IT MY UNCLE HAD IT ONE AUNT AND MY GRANDMOTHER AND ONE UNCLE CONFINED TO A WHEEL CHAIR …ITS SUCH A TRICKY DIAGNOSES BECAUSE EVERYONE HAS SOMETHING DIFFERENT .I GO TO THE NEUROLOGIST ON JAN 3 SO FAR I HAVE A VENOUS ANGIOMA THEY FOUND DOING XRAYS FOR MY BI LATERAL TMJ AND FACE SHOCKING SYMPTOMS IM SURE AS WELL I HAVE IT .I GET THE MS HUG MY FACE GETS SHOCKED , MY LES ACHE AND AND AT TIME FEEL ELECTRIC , AT TIMES I FEEL MY LEGS ARE GOING TO JUST GIVE OUT ON ME , MY HEAD FEELS TO HEAVY FOR MY NECK TO HOLD , I CANT REMEMBER THINGS, MY HANDS ARE USELESS SOME DAYS I CANT HOLD ON TO THINGS I STUMBBLE OVER WORDS I SAY EVERY DAY I DONT SLEEP IT JUST AT ALL I FEEL DRUNK AND CONFUSED SOMETIME HOPE THIS HELPS

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Sarah July 4, 2013 at 6:19 AM

Thank You! Reading about your experience helps me cope. It gave me validation and hope that this will go away.
All the Best
-Sarah

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Terri July 21, 2013 at 1:07 AM

I just found your blog and have really enjoyed reading. It feels wonderful to find someone else who gets it. One of the best things that I’ve found that can help is to know that you have someone who is, at least, willing to try to be understanding. Even if they don’t really get it, just knowing that they want to is nice. In the meantime, I feel the need to share my experience with you. I have never done anything normally…this extends to the way MS has messed with me. I have several areas of my body that suffer from regular muscle spasms. One of them is qualified as getting an MS ‘hug’. However, rather than encircling my body, I get vertical spasms where the pain usually starts around the area of my waist, runs up my side, through my armpit, then starts down my arm. It has gone from as low as my hip to as far as my fingertips. Usually, though, it is from the waist to about my elbow. Breathing is damn near impossible, movement of any kind is excruciating. Most of the time this happens on my right side, but can happen on either side. It has happened on both sides at the same time. These episodes can last for anywhere from one minute to several hours. I haven’t found anything that works to get rid of them with any rate of success, my only hope is that I can live through it (sometimes I don’t know if I’ll make it). This is one area where my children are very good with me…when they know I am having one of these episodes, they are all pretty helpful in trying to help me get through it. Thank you for putting your experiences out for all of us to read.

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lynette August 24, 2013 at 8:56 PM

Hi Sara, thanks so much for sharing your experience and knowledge. I have recently been diagnosed with Stage IV metatastic melanoma and mentioned the excrutiating, hot banded pain around my ribs to my cousin who happens to have MS. Straight away she told me about the ms hug. it is really helpful to know that others have been there and done that and share the tips etc. luckily i’ve only had 4 attacks in 3 months so i haven’t progressed to hosp visits or hard core medication yet – have been given lyrica but have resisted taken it so far. thanks again and stay strong.

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Kim September 1, 2013 at 9:01 PM

I cannot thank you enough for this post. I have been struggling with this since July 4th and there have been no answers only pain and praying that it wouldn’t happen again today. I have an appointment with my Neurologist this week and we are going to be having a discussion about this and figuring out how to treat it.

Thank you again.

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debra September 2, 2013 at 11:09 PM

Hello everyone i dud see the neuro turns out i have two 4 mm lessions on my left frontal lobe and a calcanious cyst. ..the doctor says not MUCH change from last year so they dont feel im at risk of a bleed thank god but what does that mean exactly not much change and they say they dont think i have ms but i have severe migraines no short term memory. I have had the ms hug for years they thought it was my gul bladder there are days i walk around ina daze like im drunk but havent drank a drop some times my hands shake so bad i cant even read my own writing thats if i can hold the pen i have bilateral tmj so my jaw clicks and pops like crazy but i sound like im under water and in holding a sea shell up to my ears all the time and i get shocked in my face from the temple down ..the list just goes on and on i can be sweating bullets and have goose bumps at the same time my back locks up on me i dont ever sleep my legs cramp so bad they bruise the docotors tell me they have never heard of that before my toes cross and cramp til i cry i can walk up steps but going down my legs shake so bad and im always off balance if i close my eyes or its dark and i try to touch like my two hands together its hard for me like i dont mean clap but like if i reach up its hard for one to find the other …i mean i do not know what these symptoms are but ms runs in my family i hope i dont have it but really watching me walk down a hall theb touching my nose and then her rubbing my feet and telling me to remember a sentence and then saying no its not ms what could it be why do i have the ns hug why at times do my legs feel electric from my knees down why when i sit down do my legs shake so bad any suggestions. ….

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Celia Partridge October 14, 2013 at 10:34 PM

I am a 73 year old retired female air traffic controller. My eldest son and my brother’s oldest son were both diagnosed with r/r MS in their early to mid forties. My son’s has progressed to continual decline. I have many of the MS symptoms and a brain scan showed a number of lesions, but a spinal tap was clear. I have severe neuropathic pain and Restless Leg Syndrome as well as almost daily occurrences of what has been described by other sufferers as the MS Hug or Squeeze in my chest. It burns as well as squeezes. I also have significant cognitive deterioration and loss of short term memory. I’ve not been diagnosed with MS, I believe because I have very high blood pressure, diabetes, sleep apnea, and have been diagnosed with fibromyalgia, reflux esophagitis and chronic fatigue which have many similar symptoms as well as some others and I’m much older than most patients at diagnosis. I’ve had some symptoms which started in my thirties and forties. The “hug” just started about 3 years ago, but has increased in both repetition and severity. I’ve used most of the medications mentioned as well as vaporizing medical marijuana which lessens my pain more than any of the pharmacy meds. Are there others who are dealing with overlapping diagnoses as seniors?

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misty October 29, 2013 at 1:56 PM

ive been struggling with this 6 years now. thanks for the well written article. in case any of yall are interested I made a fb group, called MS Hug fighters and survivors.

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robin April 16, 2014 at 10:28 PM

Breathing exercises and singing exercises has given me alot of relief on top of medication of course. I highly suggest the freeing the natural voice book (you can get it used for like 1.00 on amazon).

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Miranda BB January 8, 2015 at 1:26 AM

Thank you! Was thinking of trying singing and breathing exercises.

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Tracy August 28, 2014 at 10:43 PM

I have been to the er 4 times. I needed oxygen! I also had natural child birth and never cried out. I was just so sure the ms hug is how I will go. Excruciating death grip. I lived in dreaded gear of the next one. I have muscle relxers and gabapentin. Only morphine and demarol, two drugs I had never had before helped. I was call out help! It was the only word I could say. Stress heat and over doing it can trigger. Severe crushing of ribs, no oxygen. The most dreaded of all my symptoms…

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Miranda BB January 8, 2015 at 1:07 AM

Wow! I haven’t been dx with MS but I certainly experience this – from my neck to under my ribs especially for several days at a time. Has been monthly but now more often. The pain is excrutiating. I am going to do more research on MS now.

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Richard M January 23, 2015 at 4:33 PM

Hello Sara,
Multiple sclerosis is an autoimmune disease where the immune system attacks the body’s own myelin. Myelin the membrane of cells (Schwan cells in the nerves, oligodendrocytes in the brain or spinal cord) that wraps around the transmitting part (axon) of neurons to increase their speed of transmission. These are called myelinated neurons. Most neurons are not myelinated. Pain neurons are not myelinated. So why do MS patients have such a high incidence of pain?
The reason for this is the unusual method by which the body transmits pain. The receptors that activate pain neurons are very simple and respond to much of the same stimuli as touch receptors do. So, a simple touch can cause signals to go to the spinal cord by both touch and pain neurons. In the spinal cord the pain neurons activate a second level of neuron that carries the pain signal to the brain. However, if the touch neurons were also activated they would also send a signal to the spinal cord only they are myelinated so their signal would get their first. At the spinal cord the touch signal activates a small group of neurons that release a morphine-like neurotransmitter that quenches the pain signal from the body before it is transmitted to the brain.
It’s a strange arrangement and it took a long time to figure it out because we scientists were looking for a pain neuron that was only activated by pain. However, this arrangement explains why exercise suppresses pain and may also be the basis of acupuncture’s ability to suppress pain, etc. In addition to the ‘spinal’ pain suppression pathway there is a also a pain suppression system in the brain that originates in areas known as the periqauaductal grey and raphe nucleus. Activation of the central pain suppression pathway probably explains why people don’t know they are injured in an emergency situation of combat. However, this information has made it possible to implant a stimulator in the periaquaductal grey to allow a patient to suppress pain by pressing a button.
Disorders that cause loss of myelin and myelinated neurons, like multiple sclerosis or diabetic neuropathy, are often accompanied by chronic pain. That pain may be triggered by things as simple as pressure (walking), heat (sunlight), or signals from the internal organs.
Having taught 6000+ future physicians, plus thousands of nursing, dental, podiatry, physician assistant and other health care providers I can say that education in these professions is very intense. Sometimes students don’t pick up on things, particularly if they are complicated. In situations like this the correct information can be hard to find and even harder to separate from the incorrect.
Thank you for your efforts!
Richard McCabe, PhD
Teaching Professor of Pathophysiology
ECU School of Dental Medicine

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Karen G. May 25, 2015 at 7:05 AM

The HUG was my first experience of intense, chronic pain with MS. It’s been off and on for 10 years. I don’t think it has anything to do with spinal lesions as I don’t have any. The first time it happened my doctor told me I was just “full of shit”. OK, so I dealt with the constipation, but the pain remained for months. I’ve given up traditional bras for a spandex tank top thingy with underwire support or a uniboob/sports bra. Loosing the constriction around my rib cage has definitely decreased the HUG to a dull roar. Thankfully, I’ve yet to experience it 360 degrees or have my breath taken away. Unfortunately it is rare for my rib pain to resolve in a few hours. Until a few years ago, all of my MS symptoms were right sided. The HUG usually presents on my right side between my lower ribs and often includes pain shooting upward into my left shoulder like a burning arrow just so I can’t ignore it.
I haven’t found any medication other than Bextra (which was taken off the market due to heart complications) that even touches my MS pain. Gabapentin/Lyrica cause excess brain fog and vertigo for me use daily, and to be quite honest I never found them to be any more effective than Aleve for neurological pain. Tylenol and Motrin are useless. I’m not able to resort to opiates as I take LDN (low dose naltrexone, an opiate blocker) to deal with my MS fatigue and gait issues. Besides, I’m not sure opiates would work on what I consider phantom pain (unrelenting with no detectable physical cause that comes and goes for no apparent reason). I’ve never noticed a trigger for the pain. I did a full range of ultrasounds, CAT scans, and MRIs only to determine there was “nothing” wrong. Lots of scares … kidney stones, gall bladder, stroke … but the only thing that’s been diagnosed is arthritis in my neck.
Sometimes a warm bath, heating pad, icy hot patches, ice or, if I can get there, sleep will help. I’ve gotten enough balance back so I can ride my bike again and the exercise seems to reduce the frequency and duration of rib pains. Also I’m taking extra vitamin D, krill oil and adding ground flax seed to yogurt or oatmeal daily. A healthy “diet” seems to help minimize my MS pain and general tingling most of the time. I’m assuming staying away from those tasty sugars is mostly reducing overall inflammation. It also reduces the constipation that definitely adds to my HUG pain factor.
Good luck! Sometimes you just have to grin … and bear it.

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Sara May 25, 2015 at 11:01 AM

Hello Karen,

Wow – you have my sincerest sympathy for having to endure this in such a chronic way. I recently had another spinal MRI, and it seems like no matter how much they expect to find spinal lesions, they never do. My brain may be covered in scars, but my spine is squeaky clean. The “phantom pain” you were describing is tough to deal with. I tried Gabapentin for that recently, and after a couple of months of being a zombie and gaining a lot of weight I realized that it was not a medication I could take long-term. Thank you for giving some suggestions for what works for you (as much as anything can). Good luck!

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Azaelea Prawn June 6, 2015 at 6:12 PM

My first “hug’ experience started with the weird & very painful feeling that I was being stabbed in the back of my head and my upper back, these sensations moved on to being weird pressure on my abdomen leaving me unable to take any deep breathes ( all very frightening). Tried acupuncture with only very short term relief moved on to very low dose some kind of muscle relaxant which I was prescribed in the ER.

Hearing that others experience things like this helps me to convince myself that this is normal with MS and that I relate so that I don’t “freak out” so much.
Thanks for sharing what works – it;s so helpful to have an arsenal of helpful tips against these nasty MS symptoms.

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Sherrie June 8, 2015 at 10:36 AM

Lyrica calms those nerves in my rib cage that tightens. Aspercreme with lidacaine works great!

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Liana Terry August 9, 2015 at 10:19 AM

Gm, I have the exact same thing and feel your pain….believe me. It is the worst pain imaginable. I cannot believe there are stupid neuros out there that believe MS does not cause pain….what complete idiots. If they ever get MS, they will know….what a shame…they will know we are not lying and drug seeking…sorry, but I have been through hell as I KNOW you have. Thank you for providing a carbon copy of my ms hug pain…I know I am not crazy now…lol. Best wishes and take care.

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Kelly September 15, 2015 at 6:34 PM

I have never been diagnosed with MS. I had a similar experience last night and it scared me. I felt as if I had a corset on and it was crushing me. I have heart problems and stomach problems so like I said, to be blunt, this scared the crap out of me. My husband wouldn’t even acknowledge me, totally different issue there, so Iddidn’t go to the hospital. I have an appointment with my cardiologist tomorrow so I am going to talk to him about it. Anything I need to do or watch for or know in case this was the “MS Hug”?

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Sara September 15, 2015 at 9:29 PM

Kelly, I am so sorry you are going through this pain and without support from your husband. Hopefully you do not have MS, and unfortunately there is not much advice I can give on the topic. Few neurologists seem to know about it, so I doubt any cardiologist would. If you believe you have other MS symptoms then I encourage you to get a referral to an MS specialist. Best wishes for a positive outcome for you.

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Penny December 1, 2015 at 12:35 AM

Did anyone experience an electric shock like pain in the shoulder that travels down my arm and into hand and fingers? This happens in conjunction with excruciating muscle spasm across abdomen just under rib cage. Am waiting for an MRI to make the diagnosis of ms. Doctor is sure its ms late on set. I am 62 years old. Have Ben diagnosed with fibromyalgia (which I never believed) and stress, anxiety, tc. The ms hug just started happening a year or so ago and fortunately only 4 incidents so far. But the soreness lasts for days. I have been on allergy medication for years for face numbness and was diagnosed 20 years ago with ankylosing spondylitis. As and ms both have a lot of similar symptoms and doc thinks the AS has been covering the MS symptoms. Can’t wait to get the MRI and hopefully an actual reason for feeling so crappy. And life goes on, lol. If I don’t laugh I know I will cry.

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Miranda December 1, 2015 at 1:37 AM

Please check out Lyme Disease. MS is often Lyme misdiagnosed.

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Sara December 1, 2015 at 9:36 PM

Penny – Thank you for commenting. I hope you don’t have MS, but your description sure does sound like the hug. Someone else commented that Lyme disease is sometimes the culprit which may leave folks diagnosed incorrectly with MS. Your age is an unusual one for a diagnosis, so I am keeping my fingers crossed that the doctors find a more benign source of your pain. Keep us posted!

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Penny Ferguson December 2, 2015 at 2:37 PM

Hi Sara, apparently the late-onset is not as unusual as you might think. It is believed that because we are also suffering from ‘aging’ related problems that a lot of older folks never get a proper diagnosis. Anyway, I hope I have a positive result from the MRI one way or the other. Better to know what I am dealing with than not. Have a good day.
Penny.

Cheryl December 1, 2015 at 8:44 PM

Hi Sara, I was diagnosed in 1994 with RRMS. About a year ago I had an episode of severe stabbing pain in the middle of my back. It would come and go but took my breath away. The DR said it was muscular which made no sense to me since I did nothing to cause an injury. Over the past month or so it has returned. I can manage the entire day with just a little discomfort. The real pain is after sleeping and waking in the night to use the bathroom and I try to stand up…. WHAM! It grips me so severely it takes my breath away and makes me cry….. this happens several times a night and when I rise in the morning. I’m exhausted and even fear going to bed because i know I will have to go through this several times each night. My MS DR gave me baclofen but so far it’s not helping. Does this even sound like the MS hug? It’s in the right side of my back not around my middle….

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Sara December 1, 2015 at 9:04 PM

Hello Cheryl – Your pain sounds all too familiar to me! As you describe, I occasionally feel such extraordinarily sharp pains in my back that it will prevent me from moving or even breathing. For me this seems to occur in clusters – it will happen multiple times over a day or a week but then it might not happen again for months. By the traditional definition of the MS hug, I must say it doesn’t sound like the same thing. When this occurs to me, it doesn’t transition from my back into a “hug.” Baclofen has never helped me, but diazepam has provided some relief from time to time.

I am so sorry to hear that this is happening to you so often! Muscle spasms are a tough part of this disease. Regularly practicing yoga is said to help with muscle problems overall and especially with spasms in the back. That said, I’m not sure if there’s scientific evidence to support any treatment other than muscle relaxers. Best of luck finding a way to combat your pain – if you find a solution, I hope you’ll share it here!

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Cheryl December 3, 2015 at 12:23 AM

Thank you for your reply Sara. I am going to see my family doctor on friday and see what he says…. I don’t hold out much hope as he was the one who said it was muscular last year. Just want to give you a generic diagnoses and send you out the door it seems. :/

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Cactusun April 30, 2016 at 8:50 AM

I have an MS hug and get it at night. Now I use a BiPAP machine while i sleep and the MS hug has been greatly reduce. I only get a few painful episodes a month. Otherwise the BiPAP machine keeps thethe hug away.

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Erica March 27, 2016 at 8:53 AM

I have not been diagnosed with MS, but I have been getting these tight bands of crushing pain around my ribs. I have found that taking Benadryl stops them! Perhaps we are having allergic reactions to a medication? I was just put on 2 new meds and crushing pain set in about 30 minutes after taking 1 of them. Just a thought to throw out there. God bless!!

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Mary April 17, 2016 at 12:33 PM

I was diagnosed with MS about 10 years ago, quite by accident–I had an MRI for a chronic shoulder issue, and several lesions were discovered in my spinal cord. Subsequent MRI’s uncovered lesions on my brain as well. I have never had a confirmed flare up, although when ever other health issues arise, I always wonder if that is what it is. While I do have other significant health issues, I feel very fortunate in the scheme of things, since my major complaint from MS is severe fatigue, and some neuropathy in my feet. I also have Rheumatoid Arthritis, which seems to be at the front of my medical issues until lately. The other day, I woke feeling perfectly fine, but within an hour, I felt a small twinge on my right side, just below my ribs, like a pulled muscle. Within 20 minutes it had escalated to full on 10 out of 10 burning, stabbing, squeezing pain, so severe that I wound up calling 911 and being transported to the local hospital. Once there, drs suspected a kidney stone, but blood and urine were normal, and so they said it must be muscular or possibly my uterine fibroids. I have also had major back and neck surgery in the past few years, but this was nothing like that sort of pain. After feeling like I must be crazy to have had such a painful event with “no reason”, I saw an article about the MS Hug, and wondered if this could have been what I experienced? In one way, it would make me feel better if it was, but on the other hand, thinking it could come back at any time is very unsettling. I have never actually experienced a flare up either, so could that have been what this was?

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Sara April 17, 2016 at 2:20 PM

Thank you for your comment, Mary. Honestly, your description sounds a lot like MS Hugs that I have experienced (lately I have been waking up with this symptom having already started for the day). At each of my ER visits when the pain has become unbearable, they have assumed the pain was due to gall stones, kidney stones, pregnancy, etc. While it can come along at any time, for myself, I know that caffeine and stress are triggers that can definitely cause it. Diazepam, on the other hand, if taken early enough into the start of the hug, can keep it from escalating to the point of no return. I encourage you to make a note of everything you can recall about the day this began and to do that each time it happens (if it recurs) to help you find a correlation. At the same time, it’s possible that your experience was caused by something completely different, so I hope you have a chance to chat with your neurologist about what this could be and how you can treat or prevent it. In my case, my neurologists have been understanding enough to ensure that I have a prescription for “in case of emergency” pills for when this happens. Best of luck, and I hope you return to update us if you get more information!

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Cactusun April 22, 2016 at 9:55 PM

I was diagnosed with PPMS in 2009. By early 2010 I felt I had breathing issues and I went to my neurologist & he told me that I I couldn’t have breathing issues. So after a few more months of feeling strained and having difficulty even reading my son a book at night, I made an appointment with a pulmonologist. After taking several breathing test I was able 2 factually say I have a breathing problem as my lung capacity has been diminished. However it wasn’t severe enough to be given any treatment. I was told by the pulmonologist at the time it was probably due to the MS hug. I was told not to worry about it and that the MS hug is pretty harmless. So I didn’t. I thought it was just another symptom that would be bothersome but it could be tolerable. Another year went by and my breathing became more strained and another year went by where I felt I almost made my husband take me to the hospital. I went to see the pulmonologist again and this time My compacity went from 85% down to 65% and I was diagnosed with restrictive lung disease. But because my oxygen level was so good he said that there was no treatment available and I would just have to deal with it. I thought, but my breathing is getting worse where I feel like I’m gasping for breath. But the doctor had no response. Then I started to wake up during the night gasping for air and I had to start sitting up while I slept so I could breathe. The neurologist at the Mayo had me take part in a sleep Clinic and they found out that my breathing was affected during the night and I was bad enough to get a BiPAP machine. my lung capacity was found out to be 46% now . I had just gotten the BiPAP machine and hadn’t even taking it out of the package when the breathing problem that I supposedly didn’t have and that Ms hug that was supposed to be so harmless almost suffocated me. I woke up during the night and I was gasping for air literally. I could not feel my lungs inflate or deflate. My husband immediately got the BiPAP machine on me and if it wasn’t for this machine I believe I would have suffocated because I could not get any air in or out of my lungs. We called the ambulance and I went to the hospital. After running tests, the neurologists concluded that it was the muscles in between my rib cage – the MS hug. That I had such a strong muscle spasm that it encased my lungs so that they could not inflate or deflate. This particular spasm lasted for 24 hours and lessened as the days went on. By the end of my Hospital stay we were able to adjust my BiPAP machine and the spasm relaxed enough that I could go home. I now sleep with my BiPAP machine on every night. I have had a few episodes during the night that I still have to sleep sitting up because the muscle spasm is so strong that even though I have the BiPAP on I still can’t get enough air. I have not had to wear the BiPAP machine during the day, however I still get minor spasms that my speech is affected or my breathing is more shallow. But nothing like that night. I was told in the hospital that the MS hug is really not a big deal and that I probably would have just passed out but would have regained consciousness once the spasm released. However I don’t find that very comforting or very scientifically factually based. When I asked if he had medical proof of this his response was that it was a theory. I was told they don’t know how to treat Ms hugs but they believe a couple drugs like Baclofen might help. Honestly, I felt they were too relaxed about this Ms hug. Unfortunately I have a sensitive reaction to Baclofen and can only take a very small dose one time a day. Right now I am managing with my BiPAP machine at night. But I really do feel that the MS hug is misrepresented in doctors offices and on websites. And that it is not given the attention that it deserves. I should have been watched by my doctor when I increasingly told them my breathing problems were getting worse. I was wondering if anyone else had Ms hugs as severe

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Sara May 2, 2016 at 8:37 PM

Your story is *astonishing* and I also hope to hear from anyone who might have input on similar or different experiences. I sincerely wish the best for you and hope that you find relief and more knowledgeable doctors. I’m really not sure how to raise awareness for this horrible symptom. Maybe on World MS Day we should spread a “hug”-themed meme and hope that neurologists take note!

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Marianne May 7, 2016 at 10:34 AM

I too have been experiencing what you describe as the MS hug though I don’t have MS. But it is torture that I usually awaken with as I lay on my side. The pain and crushing become too much, so I try to turn over to my back and it seems to spread where I lean on the bed. I think of it as like being crushed in a barrel around my entire back and torso, neck to bum but the entire encasement of my mid section is agony and it feels like my ribs, spine, muscles and organs are encased in a crushing pain.

I do not have MS, found this site solely on the symptoms. What I do have is lyme disease plus several coinfections of Tickborne diseases……bartonella, babesia, lyme, erlichiosis, etc.. etc..

I”ve had it for over 20 years and the pain and suffering is constant and also affects my entire GI system. I have what they call musical ear, where it sounds like distant off beat music in my hearing. I also get intense pressure in my ears, face, jaw pain that no meds help.

I believe in cause and effect and this new symptom is just about 2 months old. Of course I”ll ask my doc to investigate if I”m “lucky” enough to also be getting MS on top of it all? I tend to blame the tickborne infections on everything, because doctors cannot cure me as I was diagnosed too late……..almost 10 years after this life attack occurred.

I too have white lesions on my frontal lobes in my brain, and it was the first indication of lyme+. I had to retire early b/c I couldn’t work anymore, though that did nothing but add to the mental stress of living and paying bills….I actually had to stop treating the lyme b/c a well-known lyme specialists told me I was too far gone, the infection had infiltrated my entire systemic system and my chance for a cure was gone.

With this new symptom on top of all of the othes I face daily, I always try to think what I’ve done NEW….could it be the reason?

I have started taking several new rx’s for GI issues, h-pylori infection and what is called CVS (chronic vomiting syndrome) along with what is very malaria like symptoms of fever and chills constantly, fatigue beyone being tired, etc…

I”m going to look at the effect of the new meds on my body….which could be linked. What I might suggest to all of you though, is to at least be tested for lyme disease and other tick infections, as I swear that most of the symptoms you all describe I have been dealing with (except the new hug symptom) because of the damned lyme++.

A normal Western blot will not identify the infections as the tests are not deep enough into cells of the body that TBI’s (tickborne infections). If you decide to do this, ask for a test through labs MDL or Igenex that actually wer able to photograph the bacteria in my blood cells…..scary sights to be sure).

Trust me, I very rarely tell folks to be tested b/c I’m not one of those people who try to have everyone have “MY DISEASE”. You do have MS and I”d never question your diagnosis. But you MAY have picked up a TBI in addition to the MS?

I in turn will ask my doc about the possibility of ALSO getting MS at this stage of my life and test for it. It could actually be 2 separate, but equally destroying diseases. Good luck to all, I will keep an eye here for add’l info from all of you suffering with MS or well, whatever at this stage. Nobody dies healthy as they say and sometimes the lottery you win isn’t always a positive thing, is it?

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Carol Dance June 20, 2016 at 1:02 PM

Hi, i’ve been dx with MS for 30yrs now – they now say it is secondary progressive MS.

For the past few years I have had the ‘tightening bra of doom’ as me and my GP call it. Christ, it hurts so much! Nothing works for me except Valium and LOTS of it 80-100mg per day. I have been using valium for years anyway for various spasms and am now immured to its sedating effects. So many neuros and MS nurses ‘tut tut’ at me and say ‘oh you’ll get addicted to it’ and ‘oh it doesn’t do you any good’ but like I give a flying doo dah!!! I don’t bother with the neuros anymore or the ‘nurses’ (past 5 years) as they seem to be convinced that I can control by placing heated pads or bags of frozen peas around my chest. Bless ’em. If they could feel the tightening bra of doom for just ten minutes they’d be on the morphine!

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Marianne June 20, 2016 at 2:24 PM

And the “trained professionals tell you “it’s secondary progressive MS”? What the heck…is that like saying you’re dead but now you’re really dead? Comments like they made to you are insulting and prove that they are not LISTENING to you! I get it…..you tell them you are in torturous pain and they say “I understand”. GAHHH!!!! DO SOMETHING FOR HER, HELP HER, DON’T TELL HER SHE’S SICK.

Sorry for the rant, but I too have seen doctors, specialsts,nurses pretend to care until they don’t anymore. At least recommend an alternative doctor for you to check it out with! No, that’s not their job is it? And they don’t make money for doing that!

Infuriates me that they don’t care and yet will set up another app’t with them before you leave the office!

Carol, I”d give you a hug but know it would really really hurt you. So I guess I’m sending you a progressive secondary hug. 😉

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Cactusun June 21, 2016 at 9:15 AM

I wrote about my story with dealing with Ms hug in a previous response.And now that I have used a BiPAP machine for the last 6 months I truly feel that the BiPAP machine is a possible and valuable tool in dealing with the MS hug. Just like in all muscle spasms, stretching the muscle and using the muscle releases spasticity and muscle spasm. The BiPAP machine does both of these things by stretching and forcing the rib cage muscles to work. And since I have used this machine along with Baclofen – however a very very very very small dose of Baclofen – thankfully I have not experienced a painful or life threatening Ms hug again. I still get smaller less intense ones but they are very manageable. I really do feel that doctors should look into as well as patients into using BiPAP machines as a form of treatment. You may not have a significant breathing problem so you may think a BiPAP machine is not what you need but if you look at it, the MS hug, as spasticity and muscle spasm – stretching and exercise alleviates both spasticity and muscle spasms then a BiPAP machine does both these things. so to me it seems it should be seen as another tool to help deal with the MS hug. However I as well as it seems most people feel doctors are wanting to remain Clueless on the MS hug.

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Cactusun June 21, 2016 at 9:23 AM

I left a comment on the MS hug before on my story. And now I have used the BiPAP machine for the last 6 months along with a very very small dose of Baclofen back of it. I have found that the BiPAP machine has provided me with a great tool in helping me treat My hug. If you look at the MS hug as a muscle spasm and spasticity which it basically is as it is the chest muscles intensely contracted – exercise and stretching is what you normally do when you get a muscle spasm or spasticity to get relief. And the BiPAP machine does both of these things by stretching and exercising the chest muscles. I think doctors should look into the BiPAP machine as a way to help relieve the MS hug. You may think well I don’t have a breathing problem and that is what a BiPAP machine is used for – well look at what the MS hug is – it is a severe muscle spasm. And a way to treat a muscle spasm is stretching and exercise. And that is what a BiPAP machine does is stretching & exercise those muscles. I Feel that patients and doctors should look into this being used as a tool to help find relief for the MS hug. But then doctors also need to realize and start acknowledging that the MS hug really does exist.

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Cindy August 7, 2016 at 3:36 PM

Carbamazepine, controls MS hugs.

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