Life with the MS hug

Fri 07 December 2018

Ann the poet

Ann shares her experience of the infamous MS hug, a painful condition that some people living with MS have periodically around their chest and torso.

The beginnings of the hug

It starts as a sharp pain in my spine, sometimes I can walk it off but this time it turns into something worse.

The pain creeps around to my abs and the rest of my body starts to swell. Now the pain is an angry throbbing. I have to get my clothes off, I have to be sick, I have to writhe around the floor in agony. I can’t breathe, I can’t move, I need codeine, I can’t speak, I need a wee and all this happens suddenly and exactly at the same time.

Coping with the pain

I crawl to the bathroom and deal with whatever mess occurs. Now I can feel the spasms in my abs and in between those would be a chance to breathe. But my breathing is shallow due to feeling like a tight band is being pulled around my abs, and I can’t stop crying which isn’t helping. I haven’t mentioned the loud belching and the trapped wind that seems to arrive with this agony.

My wife wants to help, she gets me water and codeine, she reminds me it will pass. She comforts me as much as she can, sometimes my skin is in too much pain to be touched. The dog is upset and pacing around. In between spasms and crying I comfort the dog, pretend to be ok and move to another room so she can’t see the next wave of pain.

This lasts until the codeine kicks in. I spend the rest of the day sleeping or watching TV. Sometimes it’s not as bad, sometimes it’s worse. Apparently this is the MS hug.

When did it start?

I was diagnosed with MS five years ago. It’s aggressive relapsing remitting and I have a Tysabri infusion every four weeks.

The MS hug started over a year ago. Recently I’ve found specific exercises that prevent this happening as much and I make sure I do my exercises every day. They involve deep breathing and engaging the pelvic floor muscle.

How to manage the MS hug

There are drugs I could take but I’d have to take them every day. Also, I’ve been on them before and I’m not willing to put up with the side effects. I’ve spoken to my neurologist about it a lot and we agree taking strong codeine when it happens is the best way forward for me at the moment. I will keep re-evaluating the situation depending on the frequency of the attacks.

Before I had an MS hug I wondered what it was and if I’d maybe had one but not noticed. Now I know that would not be possible. I usually try and find a positive angle for a blog but there’s nothing positive about an MS hug. The best I can come up with is if people are aware of it they understand if you can’t commit to some activities and they can send you good wishes and emotional support.

Download our booklet on pain and unpleasant symptoms in MS

What is the MS hug?

The ‘MS hug’ is an uncomfortable, sometimes painful feeling of tightness. It can stretch all around the chest or stomach, or just one side.

Two different effects of MS might cause the MS hug:

  • muscle spasms in the small muscles between the ribs (the intercostal muscles)
  • changes in sensation (called dysaesthesia), which are sometimes, but not always, painful.

Despite its name, the MS hug is not unique to MS – it’s also experienced by people with more rare conditions involving inflammation of the central nervous system.