Help--MS hug--desperate

[Shiela]

I have the hug every morning for an hour to four hours. Doc started me on gabapentin 200mg and it worked like a charm but after awhile it became ineffective. He increased it to 400mg and it worked well again and again became ineffective. Went up to 600mg and again it worked but then became ineffective. He didn't want to go to 800mg but did. It didn't work. Another doctor said that anything over 600mg usually doesn't work. I've tried Lyrica that didn't do anything. It seems there are no more options and I am in pain. Starts between 2 and 4 am every day and is getting worse. Has anyone else had this problem? Did you find anything else that worked?

[rickalex2]

You poor girl! I've gotten the MS Hug but fortunately its never been as bad you are getting. I've heard others using what you are, and always wondered if maybe taking a Xanax when it kicks in would help? I take only .5 mg before bed and it really helps me relax and sleep through my normal MS pain all night. And it kicks in almost immediately during the day when I need it to relax and then I only take .25mg so I don't get tired. People use it for anxiousness, but it is a muscle relaxant. Makes sense it might help you out. Don't let the low dose scare you compared to what your taking. It can't hurt to try it, at least until something else comes along. I will also say a prayer for you! That never hurts either!

[ghostgirl]

Oh Shiela. I know, they beyond suck and they seem like it lasts forever.

I don't know what else to tell you about meds (sorry). I know mine seem to be set off by position most of the time, that's why I tend to wake up with them. I hug a pillow now and that seems to really help. Depending on where the lesion is you might want to try sleeping in a recliner also.

I really hope you feel better soon and find relief.

[Debby]

Sheila...I am SO sorry for what you're experiencing...I hope you find some answers here. If you don't get the answers in a day or two bump your post up so people see it again - SOMEONE here has an answer for you, I just know it!

[Shiela]

Thank you.

[suziq38]

What is an MS "hug?"

[dancinthrulife]

An MS "hug" is an almost cute name for (in my opinion) one of the most painful symptoms. Spasms in your back and ribs make it feel like there's a "hug" that's too tight, in a way, only incredibly painful. It's my understanding that they happen to people with lesions in their spine and can be in different places throughout your torso based on where the lesion is.

[lusciousleaves]

Shelia, have you ever tried Baclofen? It seems to be helping mine if I increase the dose. It does want to make me sleep, which stinks, but it's better than having that constant pain and tightness.

I don't quite understand why neurologists view this symptom as a parasthesia and treat it accordingly, when from a patient perspective it's a muscle spasm and responds accordingly. Treatments for muscle spasms give more relief. It seems something is off there.

Others have mentioned giving the area support with a belt or binder around it. Some have gotten relief from hot packs. Warm showers seem to help mine sometimes. If it's a diaphragm spasm, drinking ice water can shut that down in less then 2 minutes.

HTH

[peatree]

I sometimes get the MS hug which effects my breathing (makes me have shortness of breath). At its worst I think there must be some kind of muscle spasm which makes my chest and right hand clamp up too. When I told my doctor he prescribed clonazepam for me. It helps relax me and makes me sleepy though too.

[mjan]

Yikes so sorry for all this pain and interruption in your life!

This was my worst symptoms for years. I used a milder muscle relaxer so I could work w/o being drowsy.( it was Methocarbamol 750mg) AND I added 3 Ibruprofin (600).

But when the spasms were the worst I wrapped a velcro lumbar support around my rib cage underneath my top. It helped me be able to breathe and move a little easier. Trust me the spasms were sooo strong it would literally squeeze the air out of my lungs all at once!!!

Now I am on Rx Diclofenac from my lumbar stenosis pain and with Baclofen from spasticity. Rx Diclofenac is a good anti inflammatory that Ortho docs use. So neuro would not even offer it probably. The ortho did for awhile, and now my PCP keeps the refills up.

But all I know is that combo seems to work for me. I have not had any terrible MS Hug spasms in a few years now. I still do get some spasms in my legs which is helpd by the baclofen.

This combo was an accidental helper as it was meant for my spine/legs issue and now I noticed I no longer have the MS hug. sssh...don't want it back!!

So I believe you may need a muscle relaxant to take with your neuro pain relievers. None of those neuro pain relievers worked by themselves.

It is MY opinion, that I needed a combo of meds (and that velcro wrap around my rib cage) to keep me moving. REST helps too.. doing labor breathing helps alot!!

Hope you get relief and soon. INMHO I think this may be part of spasticity!!

Warmly, Jan

[lusciousleaves]

Jan, I'm glad you mentioned the anti-inflammatories. This was something I added with this last round for pain relief when the baclofen wasn't cutting it. I do think it had an impact, although I can't be sure if it was the anti-inflammatory part or the pain relief part that helped. Either way, it worked, and that's the important thing. I used Aleve.

IMHO, it feels like spasticity to me, too.

[Guzzy]

Shiela
Sorry to hear you have this horrible hug too.
Mine became intolerable last August.
I now take 0.5 mg of Clonazepam about 8pm in the evening. I sleep wonderfully, do not feel fatigued on waking and it keeps the evening"hug" at bay.
HTH x

[Shiela]

Thank you to all of you for your replies.