I am posting this after reading a couple of posts where their neuro’s don’t seem to be aware of the hug in MS.
I saw my very experienced Neuro yesterday and discussed the hug that I have had for many months/years and she confirmed that I was definitely suffering from the MS Hug and it is definitely being caused by intercostal muscles going into spasm. She confirmed that she thinks this is one of the most distressing symptoms of MS. She was very knowledgable aboutthe hug and knew exactly how I was suffering.
It was so good to get confirmation that the hug definitely exists after reading some of the earlier posts. She said the things that will help is staying as cool as possible and keeping away from stressful situations.
Good going Shazzie, it seems so many sufferers do get it that it’s pretty strange that some Neuros seem to be unaware of it!
I’ve not spoken to anyone medical about it as mine is fairly rare but I’m well aware that it’s intercostal spasms (as it feels like my ribcage is trying to eat me) lol.
The worst it gets is if someone really makes me laugh and it gets worse the more I laugh! I’m like someone choking, as I do that thing where I just get up and walk away, it’s all I can do to make it stop
Mine is if I get too hot or overdo it and it feels like someone has put a tight belt around my lower ribcage. Sometimes that is it or other times I get the cramping pain too.
I was so pleased that she recognised what I was on about. Phew, what a relief. I feel tons better just listening to her tell me exactly what causes the pain/tightness.
At least we all know now that it is definitely an MS thing.
That’s why I asked her about it Jen. I read the posts before I left and I thought since I had am appt I would ask. She was brilliant. Drew me pictures of what happened when the hug kicked in too. I was really impressed. Slept really well last night too as she took away a lot of my fears. Glad it helped you too. I am starting Gabapentin next week but she said only a low dose so as to avoid feeling sedated. She said that would help the symptoms like the hug.
I’m just weaning off Tizanidine ready to start Dantrolene sodium… I’m thinking I might try nothing for a few days just so I don’t have to start new stuff right before Christmas!
First time i had it I thought it was a chest infestion, or maybe I was developing asthma! I went to see my gp expecting maybe antbiotics or an inhaler, but he said chest & lungs were fine, that it was costochondritis. But over the next few days it got really bad & i actually thought i was having a heart attack (!) - I took myself off to a&e (thankfully, definitely not a heart attack!). It has hung around for almost a year now. I was recently diagnosed with CIS, and suspect it might be the hug (but am not totally sure) … but if this is it, it is very very unpleasant indeed !
my neuro hadn’t heard of this problem, i wonder if any doctor has ever published anything about it? while gabapentin didn’t work for me, i know that lots of people find it helpful, i’ve found a related med, pregabalin, works well for me. at this point i take so many tablets i’m sure i rattle when i bump into furniture/fall over.
I got my dx in August. I’ve had a constant hug in the left side of my chest since Oct 2012 all the time 24/7/365. It’s worse at night but it’s not unbearable crushing pain as many others have just constant discomfort.
So does anyone else have something similar and how do they medicate it.
I take Amytriptyline at night and co-coldamol but they only have a limited effect.
I got my dx in August. I’ve had a constant hug in the left side of my chest since Oct 2012 all the time 24/7/365. It’s worse at night but it’s not unbearable crushing pain as many others have just constant discomfort.
So does anyone else have something similar and how do they medicate it.
I take Amytriptyline at night and co-coldamol but they only have a limited effect.
Mine is exactly as you describe. Mine is there always too. My neuro wants to start me on Gabapentin which I am gonna start this week when I pick up the prescription from my GP.
I notice that mine gets worse if I get stressed or hot.
I fee better getting reassurance from my neuro that it is definitely the MS causing it as I was worried by a lot of posts where people have said that their neuro had never heard of the hug. Mine was very reassuring.
She did say you have to build up dose slowly so I won’t be on the dose that I think she wants me on for a little while. I’ll let you know how it goes. She did say there were other options too.
It’s one of my worst symptoms, I thought I’d definitely pinned it down the other week when my hairdresser cut too much hair off and I got stressed out and the hug came on.
Then recently whilst having a very relaxed sleep I woke up with it squeezing the life out of me. There was me thinking I’d discovered the reason behind an MS symptom, I’ve got to be joking.
I have yet to speak with a Neuro who accepts it and my lovely MS nurse (when he was new and inexperienced) thought that it could be something to do with breast cancer! He does accept that it’s real now though.
