sunrise82 15/02/17
Last reply 12 months ago
MS HUG

Hello I am currently being diagnosed with MS. Last year I lost the use of my left arm but thankfully I healed and 6 months on my arm is now ok. However, for the past 10 weeks I have been suffering greatly with the MS hug. I feel like I am constantly wearing a tight belt around my upper abdomen and this is on a good day. On a bad day it feels like I am wearing barbed wire around my ribs. I have been put on 300mg of Pregabalin but so far this is not helping apart from making me drowsy. Does anyone have any advice for me and if anyone else has had the ‘hug’ for over 10 weeks. Thanks

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stumbler
1 year ago

Hi @sunrise82 and welcome.

I don’t suffer from the “hug” personally, but understand the impact that it has.

There’s some details of this symptom here :-

https://www.mstrust.org.uk/a-z/ms-hug

The Pregabalin may provide some respite, but it can take a few days for it to start working and for the drowsiness to pass.

However, given your present position in “limboland”, you need to try and control the stress that this is causing you. The following link discusses this and may be worth spending 30 minutes watching it :- https://shift.ms/forums/topic/managing-stress-in-ms

You may also want to contact the MS Nurse for your area. She’s a specialist, only dealing with MS patients. You can self-refer with a diagnosis of MS, but she’s unlikely to turn you away. Her details are :-

Katrina Orchard
[email protected]
07768 145978


cocofloyd1
1 year ago

Hi @sunrise82
I’ve been having same problem since December mostly at night. Pregabalin done nothing for me and I was prescribed Baclofen which does take the edge off, also I find wearing a tight vest helps strangely. Hope you feel better soon .


leena
1 year ago

My MS hug comes on whenever I am cooking/baking (or around anything hot) so I am very careful now. Luckily have not had it for a while now. Make note of whatever triggers your MS hug too @sunrise82


sunrise82
1 year ago

Hello all,

Thank you for your comments I will take them on board. My ‘hug’ is there all the time 24/7. I don’t think I have had one day since the beginning of December that I have not had this symptom. My fear is that too much nerve damage has been done and I will have this forever. I am seeing my consultant on Monday so will ask him about Baclofen, thank you @cocofloyd1. Due to this feeling being there all the time I cannot find a trigger for it. Last night the whole area started burning so I was up till the early hours watching Ground Hog day of all films, quite a relevant theme for me. I am just so frustrated! Thanks for commenting though I am new to all this.


kimberlina
1 year ago

Oh love, I’m so sorry to hear that you’re struggling with the hug 🙁 I had it for just over six weeks last year, and I didn’t ever think it would go away, so I know how dark things can seem right now. Eventually I just woke up without feeling like I was wearing the world’s tightest corset, excited that my lungs could expand without feeling like they were fighting against a solid wall.

I ended up on Gabapentin, working my way up to 900mg 3 times per day, and my GP prescribed me emergency Diazepam for when it was at its worst, to try and lessen the spasms. That one definitely helped, but that was more due to knocking me out flat than anything else! I also made sure to make time for yoga, because stress just made everything worse.

I really hope that your consultant has managed to find a new course for you x


sunrise82
12 months ago

Hi Kimberlina,

Thank you for your reply. I went to see my consultant yesterday and I have now had the official diagnosis of RRMS in a strange way it is a relief because now I am hoping I will get more support. I am struggling so much with this hug. My rib are so sore and now along with he crushing tightness I am am experiencing burning in the same area too. It feels like a cruel joke. My consultant has increased my dose of Pregabalin to 600mg which is the highest according to him so I am hoping it will help. I just don’t want to be on drugs that mask the pain I want it to just go but this might not happen. He has ordered another MRI with the injecttion of dye so I am hoping that will reveal if this is a sign of a new lesion.

It is good to hear your symptoms went so hopefully mine will too.

Thanks again x


lucyh
12 months ago

hi @sunrise82

I seem unusual in that I have the MS hug 24/7, for years now, particularly around my lower ribs. However, this seems very rare for PwMS and, while it is a pain, it is not at the barbed-wire stage, so I really feel for you. It wears you down all right. I’m glad someone mentioned a drug that might help. Take care. Lucyh xx

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