I got dx in August. Since Oct 2012 I have had a permanent MS Hug in the left side of my chest. It’s not the unbearable crushing pain that some people suffer with but a 24/7/365 constant discomfort - Worse at night when lying down. I take Amytriptyline at night and Cocoldamol when it gets too much.
I’m back at my neuro in Jan and would like some ideas - we’re reviewing the latest MRI’s to see how my lesions are progressing and to discuss DMD’s.
DMD wise I’m going to ask about the new oral pill Aubagio
My question is which meds do hug sufferers have success with & what side effects - particularly Gabapentin
The MS hug is really just a particular kind of muscle spasm - of the tiny intercostal muscles between the ribs - so any medication that is a muscle-relaxant or anti-spasticity agent will probably help. Ordinary painkillers like cocodamol might not help much, or at all, because they’re not addressing the underlying problem of the muscles going into spasm.
I only rarely get the “hug”, so have not taken anything specifically for it, but am on Baclofen anyway, for spasticity in my legs and feet, and supplement with a small dose of diazepam at night time. The hug has become less frequent since I started treatment for the other spasticity, demonstrating that it is just a different twist on the same problem, so the same drugs work.
I’ve never tried gabapentin, much as my neuro keeps suggesting them. I believe it does have some muscle-relaxant effect, but is mainly prescribed for nerve pain. So I have resisted, as I don’t consider I have much nerve pain, and don’t want to be taking drugs for something that isn’t really an issue. I know I do have pain from spasticity, so prefer to stick with drugs that more expressly target that. I’m not anti-gabapentin, although I do have concerns about the widely-reported side-effect of weight gain. It’s not vanity - it’s just that I worked really hard to lose more than a stone, in the hope it would ease the pressure on my aches and pains, and reduce the energy I use to get around. I’d be really disappointed if I put it all back on again - especially if it was due to a drug I don’t feel is essential, at the moment.
Hi I get the ms hug and take gabapentine to help it, as well as the other nerve related pains in my arm, hand and head. I did ask my neuro about drugs specifically for this symptom, as it is one of my least favourite, and was told gabapentine would help it. I think generally it does help keep it under control. I have had this problem since March 2012 now. It gets worse when I spend to long standing. After two hours of going out and about I really have to sit and can’t walk any further as pain increases the longer I stand. My legs also don’t like longer than two hours as I start to get pains in my left leg and my right foot starts to drag making me trip. Anyway, I have found gabapentine has helped to manage these symptoms. I started off very gradually on this drug as initially it made me feel extremely tired. I am currently on 3 x 400mg a day. I increased from 3 x 300mg a day when I started to get specific pains in my head which have now stopped. I cannot advise about weight gain. I have put on half a stone but this is partly due to…well chocolate! Also I I have also been diagnosed with an under active thyroid since starting which also causes weight gain. I think as with all drugs it can effect everyone differently. It took me a while to get used to gabapentine but my body has adapted to it and I no longer get the tired feeling with it. Good luck with what ever you choose to do. Mish x