MS Hug: My MS hug is so tight on my torso... - My MSAA Community

My MSAA Community
5,260 members โ€ข 11,270 posts

MS Hug

Hidden
Hidden
โ€ข19 Replies

My MS hug is so tight on my torso that it feels like I can't breathe. It mocks a heart attach, but there is nothing wrong with my heart-very challenging and frightening. Does anyone else have this MS symptom, it is not very common?

19 Replies
oldest โ€ข newest
Midgey_Midge06

I get the MS Hug pretty often. Its is so painful! I recently started physical therapy to build up strength and it seems to help with the duration of the hug. It usually lasts for me a month or so. Now that i do physical therapy it only lasts a few weeks.

2 likes
Reply
Hidden
Hidden
in reply to Midgey_Midge06

What do they do for you in therapy that helps your MS Hug?

Reply
Midgey_Midge06
Midgey_Midge06
in reply to Hidden

Just stretching.

Reply
Hidden
Hidden

I have not found a connection to anything I do or do not do, lucky you. I will pursue the physical therapy- what do they do for you that seems to help, please I am suffering? This hug wraps around my entire torso and now includes like a lead cape on my shoulders-breathing is difficult and my blood pressure (which has always been low) now fluctuates from low to high (had my heart checked, no problems there).

3 likes
Reply
Midgey_Midge06
Midgey_Midge06
in reply to Hidden

I am not sure exactly how physical therapy has helped - i have just noticed a difference. It cud be the stretching they have me do.

I know how much u r suffering and i sympathize. I have heard of other people going to the hospital and being put on a morphine drip for the hug. I have even called 911 and gone to the ER cuz the pain was beyond what i cud handle. It turned out i also had a kidney infection on top of having the hug.

Unfortunatly, i dont think there is anything they can really do anything for it other than throw pain killers at it and hope for the best.

1 like
Reply
Hidden
Hidden
in reply to Midgey_Midge06

thank you for your reply. I am sure you and all other MSers know or soon learn that (for almost all of us) that 'heat' is not your friend. Anything that raises your body heat can (for a lot of us) cause MS symptoms which if it is outdoor temperatures, temporary, until you get out of the sun and cool off, or if it is a fever caused by an infection, you have to get on antibiotics ASAP and then the MS symptom will recede with the body infection. I myself had to have Solumedrol (sp) intravenous/with drip on numerous occasions which I have read is important in treating the advancement of MS and preventing scar tissue. I hope everyone is getting an MS neuro who is progressive.

Reply
Midgey_Midge06
Midgey_Midge06
in reply to Hidden

Ya i live in Texas so i stay inside a LOT cuz its always hot here. Rite now its cooler so i spend more time outside. But i so miss summers

1 like
Reply
karmar21

Hi, Lindance - yes, I sporadically get visited by the MS hug! I agree, the first one was scary. I have only googled the issue, to find that there isn't much you can do about it. Knowing what it is and that it will pass helps me try to relax through it.

Since you get the hug, and not to insinuate this goes along with it, I also get tremors and body stiffness spasms. These, including the hugs, seem to occur during sleep. The tremors feel like there is a vibrator inside my chest and if one of my dogs is laying on my stomach they vibrate too. ๐Ÿ˜› The body spasm starts out very slow and ramps up until my entire body is like a stiff board. I have a lot of spasticity (lesion in my brain stem) and I think the spasm is related to that.

I'm sorry I don't have a solution for you; if I run across any info on MS hugs, I'll let you know!

Have a nice day!

2 likes
Reply
Hidden
Hidden
in reply to karmar21

Thanks for your post. I believe that the MS hug was actually one of my first MS symptoms (30 years ago), it felt like a thin elastic band around my chest back then and now it is very wide from bottom of rib cage to my neck, it is super tight and squeezes me and sometimes it lasts so long and is so bad I can barely take it. I get no help from my drs, not their fault I know. :(

2 likes
Reply
Hidden
Hidden
in reply to karmar21

I get the vibrations inside but I do not think anyone can feel them but me. They ae so bothersome. I have no answers as HOW TO HELP, so sad. :(

Reply
Juleigh21

Have you tried Gabapentin or a muscle relaxant like Tizanidine? Since I've been on Tysabri I haven't been getting the hug near as much but when I do, Tizanidine works fairly well.

1 like
Reply
Hidden
Hidden
in reply to Juleigh21

I am on 1800 gabapentin daily but haven't tried Tizanidine. This is pretty major though

1 like
Reply
Jesmcd2
Jesmcd2CommunityAmbassador

Welcome to our chat Hidden sorry for the reason tho. Although l have never had the MS hug, l know others here have. Hopefully they might have some hints or tips for you.โ˜บ

You can also check out

mymssa.org. Type in MS hugs and it will have some articles related to it โ˜บ l didn't read them but, they might help you.

Jes ๐ŸŽ„

3 likes
Reply
Hidden
Hidden
in reply to Jesmcd2

Thank you and I too am SORRY to meet you here (joking) but I appreciate your help. This MS hug that I have progressed to is NOT like it used to be, it is sometimes intolerable, sad to admit for those of you who are just beginning your life long journey with this MS monster. I am not a weenie but...................

2 likes
Reply
Jesmcd2
Jesmcd2CommunityAmbassador
in reply to Hidden

This site has been a godsend to me Hidden . I was dx'ed 18mos ago. So lm very new to this game. I learn so much from everyone. And just file info away so that hopefully l remember what it is when or if it happens to me. โ˜บ

Seems to me that if they are that painful, l would be helping at my neurologist and PCP for something besides gabapentin.๐Ÿ˜ 

3 likes
Reply
Hidden
Hidden
in reply to Jesmcd2

Sorry to hear of your diagnosis and happy to say there are at least some drugs on the market that can help you.

My Neuro is a PA as my doctor is more into 'studies', which is too bad cuz he is so good/smart. The PA wants me to have more MRIs (I have now developed an aversion and claustrophobia to them) which would mean my 50th (not kidding) remember I have had MS for over 40 yrs!! When I was first diagnosed I didn't have insurance that covered the ABC drugs ($1000/mo) so I progressed to SPMS- secondary progressive MS within 10 yrs-that said I have had just about every symptom known. I remember when I first got MS, there was little info out there, and the drs were not much better. I found a small group of MS bloggers who saved my life and my sanity so I appreciate the help all of you are sending. I am sure I have a lot of experience to throw at you, as well.

Reply
Akt92687

Unfortunately it's not that uncommon. I went to the hospital thinking it WAS a heart attack. I haven't had another one in about a year, thank the Lord.

1 like
Reply
Midgey_Midge06

The first time i got thr dreaded Hug, it was before my diagnoses. I went to the ER thinking my ribs somehow got broken. They did an xray and told me there was nothing wrong. I totally called BS on the doctor. How cud i be in so much pain and nothing be wrong??

A year later i got my answer. It was "all in my head" as the saying goes. And my spine..... the ones on my spine is what causes the Hug my nuero said

Reply

You may also like...