Thanks for explaining dysesthesias! Don't think I can pronounce it, but that was one of the first neurologic symptoms I had back in 1995 when my MS started up. Along with numbness, tingling, optic neuritis, urgency, ataxia; I think I had the full symptom set! MS hug and the other weird sensation finally stopped in 2004 when I started low dose naltrexone, even got the feeling back in my fingers after years of numbness. The research to back up patient experience is occurring finally; the first study report from Dr. Gironi, Univ. of Milan, is now in The Journal of Multiple Sclerosis. MS/LDN research at Univ. Ca and Penn State is also showing good results.
Thanks for discussing this further, Mandy. I've wondered if this MS hug is what I've experienced from time to time, but the descriptions I've read don't completely match up with how I've felt. So I still wonder -- but guess it really doesn't matter too much since the symptoms eventually go away.
A year before I was diagnosed with MS, I went to see a cardiologist for what felt like a heavily thumping heart, chest tightness and dizziness. Everything checked out fine, but I was left with no answer to what was wrong. Stress was suggested. After 3-4 mos, the symptoms gradually disappeared. The same thing has come back a couple more times over the past few years -- the most recent time made me wonder if I was having a heart attack. No pain, but taking more effort to draw in breath and a feeling of heaviness on my chest. Made me wonder if I was having some type of anxiety attack, but I didn't feel any more stressed than usual.
Do you know if there is a definitive way to know if it's MS hug or not? (lesion in a particular spot, or more defining part of symptom?)
My experience of this band feeling is lower than my chest. It occurs just below the bust line and the upper portion of my rib cage burns, it feels like a band squeezing me and like I have a fist pushing into the center of the area. Anyone else experience the "hug" in that area?
Donna
Yes. My MS hug was mistaken for gall bladder attacks when I was young. They ocurred in the upper back. Now they have progressed to the right side and under the breast. I have relapsing polychondritis so now the doctors aren't sure if the MS is giving me the pain or the RP is giving me the pain and hug feeling. I've known I have MS for about 17 years, I'm 56 now.
My problem is I have a difficult time sometimes deciding if the hug is gerd or MS or Fibromyalgia. I have it several times a day. I also have a painful muscle spasm on my left side of my back next to my rib cage that starts in if I sit resting my back on anything for any length of time. It becomes a 15 and my chriopractor uses a vibrator to relax it. MS and Fibro are so similar in symptoms that I am never sure which is acting up. I have had both I feel most of my life which intensified after childbirth and 4 surgerys. I am 61.
So sorry for your pain. I am not sure either. I was not dxed with fibromyalgia. But who knows?
I am very tired from the pain. It never really goes away lately. My mom passed away last month after a very long illness. It was physical and emotional stress during the illness. Now it's emotional. Very bad for MS.
Do you take Copaxone injections? I do. I will never know if I would be worse off without them. Didn't start when I was dxed in 1992 because they didn't have the injects then. After they came out my doctor didn't think I was "bad enough" to warrant them and said, "I don't want you to be a guinea pig." What a mistake.
I had damage in those few years. I started the shots in 2002, 10 years after being dxed. I switched neurologists.
I am sorry about your mother's passing and long illness, that alone will bring on a flair. Know your mother is with you always, talk to her, remember all of the beautiful memories you shared with her. The sooner you heal and the stress is less, you will begin to feel somewhat better.
I was on Avonex for a few years. I was also on mega medications for fibromyalgia. But once a doctor after having lab results come back, told me my kidneys and liver were still in good condition, something clicked within me and I started going off medications to insure they remained so. When I stopped the narcotics and antidepressents I found I could not tollerate the side effects of the Avonex which the drugs had hidden. I have not been on any treatment for Ms in over 2 years now. I have only had one severe flair during that time. Fortunately no added permanate damage like when I was first afflicted with MS. I have double vision in the downward and right side gaze. I saw a specialist in Miami and he told me I had 2 defects which made it impossible to correct my vision. I have learned to live with it. I wear straight on vision reading glasses, I cannot wear bifocols due to the double vission.
Do you encounter side effects from your treatment? My main pain issues, according to my rheumatologist and chriopractor, is MS related with muscle spasm's. They are pretty severe at times, debilitating unfortunately. But I push onward. I do need to find a new neurologist as my current one only treats the beginning stages of MS. I just changed my medical insurance so I need to see who is in network that specializes.
I hope you have a Happy New Year.
Thank you for your condolences.
I think your "fibromyalgia" is probably coming from your MS and is not a second issue. I am so sorry about your double vision. I get it too especially upon waking up in the morning. It doesn't last very long.
My main problems are involving muscles as well. I have that as a symptom now. I actually had muscle spasms before my diagnosis. Didn't know what was wrong. My back was so bad at only 31 that I couldn't stand up straight! I was bent at a 45 degree angle at the waist! Thank God I'm doing better with that.
Take care of yourself. Hope to come back to these boards soon.
I can relate to your back issues. I have degenerative disc disease. I am fused from
C2-C7, cervical. My lumbar is in real bad shape but I refuse to have back surgery. Whether some of my problem is due to it I don't know for sure. If I stand too long or walk far my back muscles spasm causing me to limp with the pain on my right side. Do you do any yoga or other exercising? I haven't but will be starting up light yoga stretching and meditations the first of the New Year. I am looking forward to it.
With the caution now of having too much radiation, I am not up for an MRI. I know I will need one of my brain to see any changes since I have been off the Avonex, that will have to be it for now.
I have enjoyed our communication.
I look forward to hearing from you again soon.
So sorry for your troubles, anon. I too was dxed with degenerative disk disease. My L4-5 disk ruptured after my diagnosis with MS. It was about two years before the vertebrea fused and I got relief. Also want to tell you that MRI won't give you any radiation. It's just so hard in the machine. I need an MRI too. It's way overdue.
By the way, I didn't anwer your question about the Copaxone. No, no serious side effects, just itching and maybe a lump at the site of injection. The itching stopped after a few yrs.
I've enjoyed our communication as well. Hope you feel better. I'm hoping for a better year for myself too. God bless you.
Avonex side effects for me, once I was off pain med's that masked it, were so flu like for over 24 hours. I delayed the following injection and called my doctor and he told me to take a vacation from it. Then he referred me to another specialist I never did get to, I think I already told you this, sorry. I have what we fibromyalgia people refer to as "fibro fog". Do you have memory problems with MS? I am sure it is also a symptom. I follow fibromyalgia much closer as I facilitate a support group. Keeps me busy but I find the joy in peoples faces when they first join our group so rewarding as they can now relate their condition to like minded people. Do you have a support group near you for MS? I attended a group near me but found I didn't get anything out of it as they didn't get into the updates of research, etc.. They just went around the room each meeting talking about their problems. I know through my experience facilitating our group that it is a very important part of therapy but more agenda is needed to help members. I stopped attending.
Have you looked into compound manufacturing for MS treatment? It is a pill form and doesn't have the side effects or damage to organs that medicaitons have. The draw back is that you have to have a doctor that will script it and work with the compounding pharmasist. Not all doctors agree with it.
I don't think this site has a spell check, please excuse my errors. I am not the best when it comes to spelling
.
Did you have surgery for your lumbar or just therapy to have the discs refuse? I really hesitate to have any more surgeries due to possible flair ups of either condition. Mine have not herniated but have lost seperation. They are bone on bone and crumbling. Sounds horrilbe, I imagine I will start shrinking eventually.
Again, Happy New Year. God Bless You
Here here! I'm 59 and dx'ed since 1998, but I was suffering from sx of both fibro and MS for at least 20 years before dx. I can sometimes tell if the pain and/or sx is from one of the other, but together they keep in pain 24/7.
My hug attacks usually come in the evening or even in the middle of the night when I'm trying to sleep. If I remember correctly, the first hug attack came in 2001 when I was titrating Betaferon after changing treatment from Copaxone. I didn't know what was happening at it was very frightening. I drank some herbal tea and did deep breathing. It lasted full-strength for several hours. Since then I've had HUG attacks in the middle of swimming several times and a couple of times when I was driving (luckily in our small town and not on a main road!).
Whoever invented this sx should be hung by his/her toes 
!!!
Wishes for hugs from your loved ones 
,
Maris
I hate the MS Hug, I've been living with it for over 2 years now. When it is a level 1 in pain/discomfort I don't even notice it anymore but when it is a 5-10 I get so fatigued. Right now it is a 5 and I also have a temp. of 99.2 which I know it technically not a fever, but for me whenever I feel this kind of fatigue I have a temp. of 99 or higher.
I had this in the hospital; I thought it was a heart attack. They said it was an alergic reaction to Morphine; except for the fact that i had plenty of morphine after my hysterectomy and it didn't do anything like this. I have had several attacks before; but like others, I thought it was GERD. Still, I guess it could have been Gall stone attack; but how would you know the difference? The symptoms are very similar....
I kept getting diagnosed with pleurisy since I had it in the past, Now I know it is the hug...My first symptoms were feeling like the circulation was cut off from my fingers (I always described it to dr's that "it feels like I have rings on my fingers that are TOO tight", Has anyone had this? They just feel swollen all of the time..although they are not.
Thanks
Cheri
I do not have a diagnosis- however I've had a symptom on and off and upon getting up this morning I had an A HA moment. I've read about the hug and didn't think it sounded like something I've ever experienced.
Some mornings when I get up I feel spasms all around my waist to just below my rib cage. Sometimes only on one side, sometimes all the way around my waist. I attributed it to a long existing herniated disc injury. Other times I think it's from having to go to the bathroom and it's cramping because I've 'held' it too long? I've had an ultrasound of my gallbladder and been checked for UTI's. Now I'm wondering if this is the hug?? This morning it's still spasming on and off and with some of the waves it does take my breath away.
Can anyone relate?
oh, and I am going in to see my doctor on Tuesday to push to do an MRI so I've been tracking symptoms.
I don't know if it's relevant to chime in at this point, but the HUG is one of my scariest, most awful sx.
The first time I experienced the HUG it went on for what seemed like forever, but must've been about 2-3 hours. I really thought I would choke. I thought it was a gastritis attack. I took antacids and cold water. It really hurt.
After that I had an attack of the HUG every few months, always in the evenings when we were relaxing / dozing opposite the TV. At first it really freaked both me and my DH out completely.
Since then I've had many attacks, even in the middle of my morning swim. That was freaky. I went through about 3 months of HUG from last June (2009) until some time in Sept. It ranged from a level 2 to 15 on a scale of 10!
I have found that swimming seems to help me. I think it's the rhythmic breathing that seems to relax the HUG to some extent. Of course, if it's really bad, I can't get to the pool at all, no less into the water.
I'm going to have a total MRI in a month: brain + spinal column. I have a feeling there must be stuff going on in the spine that brings on the HUG. I'll let everyone know what I find out.
Has anyone ever noticed a connection between the HUG and TN? I seem to get them together. Just a thought.
Peace & Serenity,
Maris
Hi, I am presently starting again with the MS Hug. Painful in the chest and out of breath when I do anything. I was interested to hear about swimming. I am a swimmer and missed the past week not wanting to overdue - but in your opinion, you think in the long run this helps?
When I had these symptoms last time, I had some extra acupuncture and massage treatments. For anyone who reads this, and knows of someone is reputable in this area, particularly acupuncture, I recommend it as the number #1 treatment that helps with MS symptoms. (At least for me.) Unfortunately, this seems to be the time of year after the holidays when I kind of fall apart.
Cindy,
I find that the rhythmic breathing when I swim somehow helps the feelings of choking and the pressing on my chest. I usually have to tone down and cut down my swimming when I'm in the midst of a HUG.
Right now I'm flaring with a bunch of other sx. From Monday afternoon until midnight I couldn't really walk. The pain down my whole rt side, especially mid-back to ankle, was excruciating. It's a little better this morning (Wed) after limited swimming and my weekly alternative treatment yesterday. I'll keep my swim moderate this morning as well.
Feel good and keep smiling. A smile always helps 
.
Soothing hugs,
Maris
I have been dealing with this daily. I was diagnosed with MS almost 20 years ago and became disabled in 2008 after relapse in 2006. The tightness/spasm across my chest has gotten worse, to the point that I have these attacks multiple times a day. This article really opened my eyes to what it could be. Thank you so much!
God Bless,
Christine
I have not been diagnosed with MS yet, but I get the MS HUG this way. Mine starts in my arm or back and slowly moves to my ribs and chest, it feels like i am being squeezed so tight. It hurts to breathe. I found that if i hold my breath for a few minutes if possible, the muscles will relax and the episodes will last for a shorter period of time.
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I had this and it actually did make me feel quite short of breath on exertion. Very much like wearing a tight corset, came back as part of a relapse too but subsided after about 6 weeks and not had it now for about 3 years.
I hate the thought of wearing a corset!
I'm glad that your hugs haven't shown up in awhile. It definitely helps to hear from people who have experienced "the hug" first hand.
I am so glad to read this. I am just experiencing "MS Hug" for the first time after being diagnosed with MS for 10 years. My only problems up to this point have been dizziness and optic neuritis. The new symptoms started about a week ago with strange numbness and tingling around my lower torso, progressing to pressure. Wow, I didn't even connect it to my MS diagnosis for the first couple of days! I am in the middle of a course of SoluMedrol right now to try to get this very annoying symptom to abate. Wondering if a new spine MRI will show anything?
Thanks for the info.!