Hi everyone
I have been suffering really badly with the MS Hug. I have had this on and off since d/x in 2005 but this last bout has been really painful as well as feeling as if I have a tight band around my middle. The pain is right sided and is worse if I don’t wear lose clothes.
Just wondered who gets pain with their MS Hug and who gets the band without pain like I used to.
As always I would be really grateful to hear how it affects you.
Take care of yourselves.
Shazzie xx
Hi guys I’ve got the ms hug at the moment, it’s only the second time it’s happened to me. The first time the hug came and went but this time the sensation has been permanently there for at least 3 days and it feels much tighter than last time. It’s such a strange feeling. I don’t have any pain from it, just discomfort, but I am already on a pretty high dose of I had my first infusion of tysabri yesterday, it went well and I don’t think I have had any significant side effects. I did, however, get myself a bit worked up in the days prior to the infusion, do you think stress and anxiety could have aggravated the ms hug? Zoe x
Hi Shazzie, yes I get it a lot and for hours or days at a time. As Mel say, pregabalin or gabapentin help, and I’m about to try a drug called topiramate.
For short term relief, try paracetamol. I take it a Lemsip which is so comforting that I think it helps.
Avoid heavy meals and avoid being hungry. Loose clothes (as you are doing) and no bra.
You can’t fight it and ‘carry on regardless’. Go to bed and rest… although getting comfy is really difficult. Sometimes lying flat helps.
Hope you get some relief soon. It is crap. Far more distressing than the word ‘hug’ implies.
Pat x
Oh sorry forgot to say I used to only get the band with no pain, but it’s become painful now and feels like my ribs are bruised. Very sore when I touch them, esp on the sides.
Pat x
Still not sure about this site. Knew exactly what I was doing with the old site. I wanted to reply to everyone that replied but not sure what to do. I have clicked on post a reply but not sure who it is going to so I’ll do a general reply til I get used to it.
Thankl eversomuch for your replies. You have been really helpful.
Mine feels like I have been stung with stinging nettles and feels numb and sore.
I’ll follow your advice. Not sure about taking the bra off though. Don’t think the world is ready for that one!! Although when I put my jammies on it is much more comfortable so I reckon it definitely helps.
Take care of yourselves and thanks again for your replies. It really helps to hear that I am not on my own!!!
Shazzie xxx
Hi Shazzie
I suffer really badly with this thing that I refuse to call a hug, strangle is more like it!
If I stand up for more than 10 minutes I feel as if I have to bend over, and feel short of breath until I’ve sat down for a good 20 mins again.
It’s not always a pain, but very tight and I sometimes feel like I can’t get a deep breath, or not able to eat a proper meal. Lying down helps mine. It often feels like I’ve got a fist stuck in my side, and again very painful ribs to the touch.
I do find it gets worse when I’m hot or stressed so try to keep cool, also if I’m tired.
I’ve been given Baclofen for it, so far it hasn’t done much but I can’t raise my dose as it doesn’t really suit me, and I’m scared to take gabapentin because of the side effects!
I’ve had it on and off since 2006 when I was dx, but had it permenantly since last July. I’ve had 9 infusions of Tysabri and this is about the only thing it hasnt helped!
Donna xx
Hi Donna
Thanks for replying. It is really helpful when someone who is suffering the same symptom gets in touch as I do feel a bit alone sometimes. My GP has admitted that she doesn’t know much about MS.
Like you say the hug is a stupid word to describe it and it should be called the strangle like you say.
Thanks again for replying. I really appreciate it!!
Take care
Shazzie xx