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Hands up if you suffer or have suffered from MS Hug?

Hi fellow MS’s, I hope you are doing as well as can be expected. I expect you are like me and are much better now that it’s cooled down a bit.

From speaking with friends in my local branch there seem to be only 2 (including me) who suffer with this very painful condition. At a recent meeting people looked at me with blank faces and even thought the phrase quirky and funny.

Now I know from communicating with people on this board that there are many others who have experience of this.

It does seem strange that there are so few as I always thought it was a common symptom. Most of my friends are not new to MS, I belive someone told me it’s source is a spinal rather than brain lesion, don’t know if this is the case.

Thank you for any replies.

Wendy x

hi wendy

very early on in my life with ms, i was sitting in my living room with my husband and sister.

sis wanted to go to the pub, husband was up for it and i was ok about it. but suddenly i had to clutch my chest and started to breathe funny (or so i was told).

sister and husband were very concerned and wanted to send for an ambulance but i was concentrating on breathing.

it started to pass after 60 mins.

i looked it up as a symptom of ms.

fast forward 6 years and i had a massive relapse in february this year.

the hug (now renamed the death grip) was back and much much worse.

it lasted over 4 weeks and even when it started to ease off, i was left with bruised feeling ribs.

i found out that it is the inter costal muscles between the ribs going into spasm.

it is a truly vile symptom amongst many vile symptoms!

now i know to lie down in whichever position is the least uncomfortable, maybe use a hot water bottle, and wait for it to finish kicking me half to death.

i know i sound dramatic but i really felt like i’d been beaten up.

hope yours isn’t too active.

carole x

Hi I have this from time to time and it’s horribly painful. It does feel like my breathing is restricted and when I have it, it’s impossible to wear a bra and clothing all feels tight. The pain is literally all round my back really hurts too. Touch wood haven’t had it for a while:-) Tx

My experience is not pain like carole describes. It’s more a tight, sore kind of feeling round my chest area and I need to take my bra off. Also want to take deep breaths…wasn’t really sure at first if it was the hug…which is a stupid title to give it.

I do have lesions on my spine but no idea if there is a connection

I had quite a mild version when I had some symptoms about 18 months ago - felt like I was wearing an extra bra with the band a bit lower than normal and it was too tight. Funnily enough I was lookig at old posts about it this morning because I have had it again, only more strongly, over the last few days. Feels more clutchy and painful and made me catch my breath a bit.

Thanks for the replies, like some of you I have my ways of dealing with it. The mild version is with me all of the time and makes it impossible to wear a decent bra, Baclofen has helped but not enough to wear nice bras. The harsh version usually comes on with stress, heat, or getting excited about something. I have learnt like Carole to lie down if possible if I’m out I take deep breaths and an Amitriptyline (although I don’t think they are safe to take in the day time if driving a car).

Saying this sometimes it comes on when I’m asleep and wakes me up with a jolt. I have been given Clonazepam, which does tend to knock you out, so it has helped some.

Wendy x

Hi, I have suffered from this so badly I ended up in a&e thinking I was having a heart attack. I suffer from this regularly and find Valium takes the edge off.

ann

I have had this where I felt like I was having a heart attack and more recently I have had pains between my ribs but much milder n tends to be in the same place and not all round like before!

hev xxx

Juding by these posts, I think I got away with this one very lightly!

My neuro declared my symptom to the the “Hug” - it felt like I was wearing a belt round my waist a bit too tightly. It was annoying rather than painful but lasted for about a year. “Touch wood” it hasn’t come back.

I also believed the death grip to be a common symptom.

Emma x

Thanks for the replies, it does seem strange that out of around 15 people in my branch only 2 have it regularly or have had it. (Or have heard of it) Perhaps people have just forgotten, especially if they haven’t had the cramp or nerve pain vesion.

It wasn’t until I advised MS nurse that I nearly called an ambulance that I was taken seriously by Neurologist.

One Neurologist told me it was not an MS symptom; also a bout of virtigo was not MS this lead me to conclude that he knows very little about MS and I try and avoid seeing him where possible

Wendy x

Me too. Had the hug ever since diagnosis in 2005. There all day every day. Can’t wait to get my jammies on at the end of the day.

Much better now it is cooler.

Shazzie x

I have had the hug since diagnosis in 2005. It has never gone and is there all day every day. Just learn to live with it. I can’t bear to wear tight clothes. Always floaty loose fitting stuff. Definitely not brave enough to take my bra off. Always glad to get my jammies on though.

And yes, the cool weather is lovely. Makes symptoms much better.

Shazzie xx

Just now starting for me after some help on here from these excellent folks i realised ive had it for years but only now know what it is and docs yesterday confirmed it unfortunately im in the hug club

respect sheep

I’ve had the hug for years, thankfully it’s not given me constant pain. It’s always there but hot weather, stress or excitement makes it flare up & I find myself feeling breathless & the band tightens, lying down usually makes me feel worse. When it’s bad, luckily it just lasts for a day or two.

Rosina x

I have been do with MS for almost 6 years but have probably had since I was 21; in the last year and a half I developed back pain that started in my mid back and came around following my ribs, I had pulled a patient up in bed like I’ve done many many times over 40plus years of nursing, I had actually caused 4 compression fix in my thoracic spine, I had 2 of them cemented together in June of 2016 and was pain free for 2 months ,pain started after I went back to work in a pediatric clinic and put myself on a 20lb weight limit which was easily done since the parents could do the lifting but after 2 months the pain I had before I had back fixed. The pain has persisted even though I hadn’t done anything to cause it, although it has come back with fury, can’t wear bra any longer because anything that’s tight makes pain worse, I don’t have trouble with breathing but I take neurotin 3 times a day along with muscle relaxer 2-3 times a day and now have to take hydrocodone 3 times daily to have any quality of life. I do have radiculopathy also, my back is full of bulges compression fix , stenosis and I believe I have ms hug also, never had back before March 2016 now my entire life has changed, I haven’t been able to work since 4/17

My pain has been constant for over a year now and nothing has helped the pain except hydrocodone 3 times a day as bad as I hate to take and now withe “opiate” war or whatever they call it I can’t even get enough meds to last a month, I just have to suffer for the last 5 days of the month before I can get a new prescription and I’m a nurse that has a perfect record for 42 years and they have thrown pain management totally out the window!