Is this MS hug? How do I make it go away!

Hey all

Was hoping this would just go but it hasn’t. Since Sunday I’ve had this incredibly tight feeling round my chest and back on the L - almost like I’ve got half a belt or half a corset on just on the L. I’ve tried everything to try and help myself from stretching, slow breathing exercises, meditating, distracting myself with other things to even trying my partners asthma inhaler. Its no better - finding it really distracting at work.

Is this MS hug? How do I help it or make it go away? I’m due to fly out to a conference and long needed holiday for the next week from friday and I’m slightly worried what I’ll do if it gets worse abroad.

Help!

Reemz

Hi Reemz

I thought I was having a heart attack the first time it happened… read Rizzo’s (Karen’s) comment on the previous post “still waiting” within this still waiting/Diagnosis section of the blog.

I took great comfort from her comments as some symptoms can be scary, I have to say the “hug” (which is a real misnomer in my opinion… are we talking about a hug from a boa contrictor) is one of the scariest symptoms that I’ve had, but I am not diagnosed with ms so am loathe to give advice unlike someone like Karen who has real depth of knowledge and can speak from experience.

Gill x

Hi Reemz x So sorry I can’t help you - only sympathise with you! xxx

I ended up in A&E with ‘the hug’ as well x

I’ve had it twice now where it’s got so violent and spasming in constant waves that it laid me out for weeks - that was a year ago though.

Since then I have the band like crushing sensation most of the time but can’t find any way to relieve it x it’s a miserable symptom x hopefully it’ll be fine by the time your conference and hols come round x

I do use voltarol anti inflammatary gel a lot - I think it helps a bit - rub loads in xxxx

xxxjenxxxx

thank you for your comments girls. Yes I did contemplate going to A&E at work at one point yesterday. Took some painkillers and used some anaelgisics as you suggested which has taken the edge off slightly though it’s moved lower down my back and abdomen as well (I can take a deep breath now but it hurts/feels uncomfy and my back cracks when I do).

My pins and needles seem to have flared up again also on my L leg /tongue. I’m not sure if I’m having another flare up of symptoms as the pins and needles had gone since december (apart from when I had flu they flared up for a week).

My neuro told me to let him know if anything gets worse but after telling me I was pessimistic and needed to ignore my symptoms I don’t see what it will achieve - I feel like he’ll just tell me to suck it up and put up with it.

Joys of NHS. As long as it doesn’t get bad like yesterday I think I’ll be fine. Yesterday I could barely concentrate - and Gill - boa constrictor describes it perfectly. I told my other half this and bless he does try to understand no matter how strange it sounds.

Reemz

Hi. I am not diagnosed with MS but have been experiencing MS-like symptoms for a month now (pins ‘n’ needles, numbness alll down left side from head to toe, double vision in right eye) and that bloody awful ‘hug’ which feels just like you describe, like corset that has been pulled in as tight as possible!.. or a wide rubber band across my rib cage but only on left side. It feels crushing at times. Not really painful but really scary and uncomfortable to say the least. I went to my GP who sent me to hospital for a CT scan but that was clear so am now waiting for an ‘emergency’ neuro appointment whihc was two weeks ago now adn heard nothng. Stil got all symptoms but have regained some strength in my leg and arm so don’t need a stick to help me walk any more. I haven’t cooked or really been out of teh house for almost as month due to horrible symptoms. I am hoping it’s not MS but also hoping it is nothing worse! The waitnig game is just horrible. The not knowing.

The ‘hug’ feels worse at night but better/less severe in the morning. I think the two worst things for me right now are the ‘hug’ and the double vision because I have to wear an eye patch over my right eye all the time.

Hi Midnightmoon.

Thank you for your reply. Yes the waiting game is terrible - at least if you know whats wrong you can try and help yourself. I’ve had one MRI which showed some lesions but the neuro wasn’t very forthcoming about whether they were consist with MS or not. He said he couldn’t say if I did or didn’t have it. I now have a repeat MRI due in the next month or so.

The hug seems to have relaxed a little thankfully but yes mine did feel worse at night and also if I had tight clothes on if my partner was trying to hold me whilst we slept. Strange!

Will keep my fingers crossed your appointment goes well. It’s horrible thinking I hope this isn’t MS but then I hope it’s nothing worse. Limbolands terrible!

Reemz

X

I’m not sure if I may have had it, I get a tight feeling around my diapraghm area up to a little of my chest and its almost as if my diapraghm as stopped working temporarily, I don’t feel breathless , but I all of a sudden have to work very hard to feel the rise and fall and when I try to speak its as if there is very little air in my lungs. It usually comes on when I get too hot, does this happen with anyone else?

Hiya,

I have experianced severe pain around chest and back, it is really tight and crushing. It then gets tighter and the pain peaks! then settles abit then peaks again. I thought it may be galbladder, but neuro said more like muscle spasms. No pain killers have worked yet have been recommed to try Diazepam.

Ppx

I can sympathize!! I’ve had this happen to me twice, the most recent being about a month ago. I remember it clearly because my husband and I were going to go out for dinner and watch a movie. That afternoon at work, I started to feel like my ribs were achey. Then it felt almost like asthma – but I didn’t have that “wheezy” feeling you get with asthma. I look my inhaler nonetheless, but it didn’t help. By the time dinner time rolled around, I was in agony. It didn’t matter what position I got into (lying flat, stretching my arms, hunched over, sitting up very straight), I just couldn’t alleviate the pain.

It literally does feel like somebody is using a vice and crushing you around the ribcage. Ugh! Terrible feeling to have!

For me, it went away in a couple of days – so I really hope that it goes away soon for you as well.

Thank you everyone :slight_smile: My symptoms have almost gone just an occasional awareness round my abdomen or ribcage but nowhere near what I had a few weeks back. I hope I don’t get it like that again. For once I’m actually having a good few days (touch wood).

Thank you again for all the response - it really does feel reassuring to know you’re not going bad having these strantge symptoms and that you’re not the only one.

Reemz

X

Hello everyone

I am looking for advice and support about the MS Hug.

My husband has RRMS and his condition has been pretty stable for years ever since he was diagnosed some 20 yrs ago (long time before we met). About 2 months ago, he woke at 4am with extreme pain round his chest, said it was a feeling of being squeezed very tightly or crushed, made his breathing difficult and he was convinced he was having a heart-attack. Asked me to call an ambulance, which I did. After they did a heart trace in our bedroom, they said it was not his heart and suggested we went to A&E. A&E consultant advised referral for access to Rapid Assess Chest Pain Clinic, referral to MS Consultant & MS Nurse etc. Going through the process for all this right now (have an appointment in 1.5 weeks), but GP says we have to do the RACPC first before she can refer to MS Consultant.

Husband has now been suffering from this MS Hug for 8 weeks, having been told to wait for 6 weeks to see if it goes away (if it was a muscular thing). He is almost at his wits end with it. He is exhausted from lack of sleep, and has no energy to do anything. Nothing seems to help - co-codamol/ibuprofen - it seems worse if he is lying down or sitting. Seems to be easier when he is walking around and upright. He is very tired and down, as a result.

If this is an MS Hug (which is our belief, having Googled it as the GP seems to want to focus on other possibilities at the moment, including gastric reflux) please could anyone help me with the following questions:

  • does it ever go away

  • how do others cope and what do you find works to ease this pain/discomfort

  • is it likely to be an indication that his MS is getting worse

He is still working full-time and ideally wants to continue to do so for as long as he can. He is 55.

Any suggestions or advice would be very welcome. I feel quite helpless and don’t know how to help him, other than go and get more pills each time. There must be something better?

Thank you for you time.

If this is MS Hug then painkillers are pointless.

The muscles in the chest are going into spasm and your husband needs a muscle relaxant like Baclofen or Dantrium.

As your current GP doesn’t seem to be sympathetic I suggest you change to another surgery.

Best wishes,
Anthony

I don’t know if you’ve seen this: MS hug | MS Trust

Sue

Hi Sue

thanks for your reply. Indeed I have seen that on the MS website - it is what we read together and decided it exactly described how he feels, so we think this is what it is.

We are now a few days closer to his RACPC appointment in a week, but every day is painful and uncomfortable for him. He is now finding Ibruprofen helps a little and pain killers do nothing. He needs to sit down and rest after the slightest exertion, and is complaining of shortness of breath.

I hope that something comes of the appointment in a weeks time, or that it then allows us to access the MS Consultant/Nurse. He cannot go on like this for much longer - it has been like this since 30th July!

I appreciate you taking the time to respond to my post, Sue.

Thank you for this Anthony. The sooner we get access to an MS Consultant/Nurse, the better (I feel). Thanks for taking the time to reply to my post.

Hey Dog Walker,

why not get a GP appointment to ask for baclofen or dantrium as suggested by Anthony? perhaps a different GP to the one previously seen

hugs

Min xx

Hey Dog Walker,

why not get a GP appointment to ask for baclofen or dantrium as suggested by Anthony? perhaps a different GP to the one previously seen

hugs

Min xx

Hi Min

Thanks for your reply. We have been all over the place since I last posted. He has had chest pain assessment, 3 GP appointments with different GPs, and now we have had an appointment come through for the MS Consultant…not until early December! Feels a long time to wait : (

As far as pain relief goes, he was put on Trammadol (great, we both slept at last but it zonked him out and he was sleepy all the time) so now he has been put on Amitriptaline. I was surprised as this is an anti-depressant but I see from Google that it is also used for neuropathic pain, so let’s see how we go. He only takes half a tablet at night for a couple of days initially then increases to a whole tablet tonight. He is not impressed so far, but I keep saying he needs to give it at least a few days!

I think he said that they discussed Buscopan (or was it Baclofen) but he said that there is an issue with timing with it…sounded complicated to me, and he agreed with the GP to try Amitriptaline until we manage to get to see the MS Consultant.

He has been tetchy a lot recently, which I find hard to cope with, but this was better when he was on the Trammadol. Too early to see any change in this aspect of him on the Amitriptaline yet, but I am hoping it will soften his “prickly edges” a bit. I don’t feel I can ever do more than mention he “was a bit snappy the other day” etc - I understand he is going through a lot (which he may or may not share with me) and I assume it is the MS to blame.

Perhaps I should join him on the tablets! (I am joking).