? about spasticity and the "hug"

[madmelissa]

Hi all,

It's been few months since I've been on the boards. I took a bit of time off from seeking a diagnosis to let myself de-stress a bit, but am now back (both here and to my drs) to try and find some answers.

I'm currently having a "relapse" that includes a VERY uncomfortable (though not exactly painful) "hug" around my chest and back, an increase in spasticity in my legs (with a fair amount of pain) that is causing my footdrop in my right foot to be worse, and some relatively minor balance issues that may or may not be a result of the spasticty.

My question has to do with the "hug". I have read that the hug is a parasthesia, and I have also read that the hug is a result of spasticity in the rib muscles. So which is it? Can it be caused by both?

While I get stabbing, shooting, burning, tingling, etc. sensations in other areas of my bodies, I have never had this hug sensation anywhere other than my back and chest. Mine almost always lasts anywhere from 1 1/2 to 2 1/2 weeks, and tends to increase in intensity over the first couple of days, and is almost always accompanied by an increase in spasticity  in other parts of my body, especially my legs. Because of this I've always tended to think of my "hug" as being caused by spasticity.

I'm wondering whether those of you that experience the hug feel yours is a parasthesia or spasticity?

Thanks,
Melissa

[madmelissa]

Mary, I'm so glad my question has been helpful to you!  You yourself have done a great job describing the various forms your spasticity takes. I especially enjoyed your undulating aliens! lol

I completely understand what you mean about your hug being hard to describe, though I think you too have done a decent job. The one difference I have from you with my chest and back hug is that I cannot easily take a deep breath. I get plenty of air as long as I breathe slowly and shallowly, but if I try to take deep breaths or yawns, I can't complete them - it's as if my chest hits a brick wall and won't expand any farther. Or perhaps like I'm wearing a corset. My O2 levels are at 100% so it's obviously not ACTUALLY restricting airflow at all.

I just started on baclofen last night. It is working wonders already on the spasticity in my legs, which has been very intense the last couple of days especially. I have had a functional drop foot for over a year now, which has not improved overall, but does temporarily worsen when my leg spasticity increases. I have had a very hard time lifting my right leg high enough to clear my toes, and have been tripping and stumbling constanly the last few days if I don't carefully pay attention.

The baclofen is already helping me back to my "normal" footdrop gait. I never would have thought I would be happy to have that back, but it is such an improvement over the last few days! lol My hug has definitely improved on the baclofen too, though not as much as my gait, but even a small improvement in my hug is better than nothing!

Mary, have you been on a course of IV or oral steroids? I am glad that they seem to be helping you. My GP had given me a scrip for oral prednisone which has not done much if anything for me, and I am considering asking him about IV Solumedrol.

It really bites that you've spent your vacation feeling so unwell! I hope you start to see a greater amount of improvement really soon so you can have a bit of your vacation left to actually relax. I also hope your MSologist appt on Monday goes well too!

Jen, Thank you for helping to clarify this further. I am fairly certain, from what you and others have explained and described, that my hug is caused by spasticity. I do get parasthesias, but they are a wholly different sensation than my hug. I am definitely having improvement (though only partial) with baclofen.

Thanks so much to everyone who has responded to to my questions! I really appreciate it, and it will help me better explain it to both my GP and the new neuro I am being referred to. Not to mention the more I understand what is going on with my body, the less out of control I feel.

Melissa

[jensequitur]

I'm just going to put in my two cents here...

Spine lesions cause both paresthesia and spasticity at the level of the lesion.  If it's a painful cramping sensation that feels nothing like your other paresthesias, then it's spasticity.

For example, I get burning, tingling, numbness, prickly feelings, buzzing, and cold sensations at the level of the lesion, around my back.  That's paresthesia.

I also get painful spasms around my torso, sometimes ending at my esophagus.  That's spasticity.

[twopack]

Thanks for asking this question Melissa!!!  I'm been meaning to ask it myself but just couldn't get my thoughts together about it.  You did a WONDERFUL job of describing what you experience and got a couple of good answers as a result.

I'm already diagnosed with MS but "the hug" is new to me.  At least recognizing it is.  It was my PCP who named it for me when I was in her office a few weeks back.  She suggested I call my MSologist for a steroid course.  I finished that up four days ago.  I'm finally feeling better and hoping the improvement continues.  I'm not prepared for this to end up being an infamous New Normal.

I’ve had spasticity in the past that made me feel stiff or made it difficult to move joints fully.  I wasn't always aware of the increased tone or what caused it back then.  That type of spasticity feels like muscle tension that is impossible to voluntarily relax away.  In fact, it stays with me even in sleep.

I've also experienced spasticity that is painful when I move too fast.  This happens mostly in my shoulders (like when I've been resting my arm on something and then move it away quickly) or calves (when I point my foot down to put a shoe on).  It has also happened in my back (about kidney level) if I over-twist my torso.  It stops me cold with momentary pain and teaches me to move more carefully.  It has been helped by a program of regular and careful stretching exercises that progress in *s*l*o*w* *m*o*t*i*o*n*.

Then I've had spasms that are more like old-fashioned cramps.  The first of these was under my right shoulder blade.  It stole away all breathe, speech and movement in the way I remember labor contractions did once-upon-a-time.  It began to relax after about five minutes.  I have had the same type of spasms in my calves.  They get hard as a rock and undulate like some alien parasite is trying to break out.  Those make me desperate for relief.

This “hug” is harder to describe.  It is like there is a band around my chest where my bra usually is (except I can hardly stand to wear one these days!).  It feels like it is being pulled tighter and tighter around me.  Like you say, the pressure is VERY uncomfortable but not what I would call painful.  I feel like I can't breathe but I actually can take in a deep breath.  In fact, doing so can actually make me feel better very briefly.  But the tightness soon returns full force and I have to concentrate to keep my breathing regular.  Otherwise, I add hyperventilation tingles to the MS tingles that are going on.

The “hug” sometimes spreads to my throat and feels like there’s a strangle hold on my neck and direct pressure on the cricoid.  Yet, I can still swallow without difficulty and eating a few bites or sipping hot tea can bring the same momentary relief a deep breath does.

I’ve felt a similar tightening over my face as well.  It's as if my skin is shrink wrap tightening down under a heat gun.  (Is this what people feel like after a face lift?  Yuck!)  I have felt the same thing in my arms and fingers.  Sometimes there’s a burning sensation.  Sometimes it’s satisfied just to squeeze me to death.

These sensations often come and go in wave-like patterns.  At times they persist for hours and demand 100% my attention.  Although there is no real pain, I did take a couple of Vicodin one night in hopes of escaping the experience (didn't work well).  A trial dose of Ativan didn’t help either.  I can't even watch idiot TV when this is going on because I can't keep myself distracted from the desire for release for more than a few seconds.  I quickly reach a state where I am overwhelmed emotionally.

What I haven't been able to feel is any actual muscle tightness in my chest, neck, face or arms when all this is going on.  I feel around with my fingers and stretch muscles in every direction.  I detect no tension under the skin and get no relief from stretching.  That has made me ask the same question you have.  Is this actual spasm or is it a parasthesia?  I've had very little in the way of numbness, tingling or odd sensations with my MS.  This is a whole new MiSerable world.

Some spasticity must be involved because baclofen does help.  I've been taking 10mg three times a day and (when I forget to take the afternoon dose) know exactly when it wears off.  I've thought about calling the MSologist to ask for an increased baclofen dose or ask if I need to add another drug (maybe gabapentin or Trileptal or Lyrica).  Now that I've made it through to Friday afternoon I'll just wait until my Monday appointment to find out what he thinks.

So this is how I've been spending my long awaited 23 days of May vacation.  It s*u*c*k*s big time but I am getting a chance to see how steroids play out for me in an exacerbation.  I want to have a good idea if I should give them a nod sooner next time ---- or just leave them alone all together.

With any luck at all I'll get through this with nothing more than an increased baclofen dose, the rain will stop, I'll get to actually enjoy a few of my vacation days, life will resume it's normal pace and I will be strong enough to return to work as scheduled.

FWIW Melissa, besides the above, I’ve had more balance issues and some dizziness during this flare too.  I’ve been tripping over my right toe again and my arms fatigue with next-to-zero effort.  On the right side, my vision is crappy, I get shooting pains in my eye and ear, my ears feel clogged (even after the PCP flushed both out), areas of tingling numbness reach across my face like fingers, half my tongue is numb and my nose is periodically congested.  My legs have done quite well in comparison.  Too bad the rest of me isn’t on board for them!  (I guess they aren’t getting much of a test then are they?)

I do apologize for going on and on so much here.  I must thank you again Melissa.  Your question got me started and I’ve ended up with a pretty good summary of the last few weeks.  This will just need trimmed a bit for presentation to the doc on Monday.  I hope you got some answers ‘cause you did me a huge kick-in-the-pants favor.

Hope you feel better soon and meet success this time ‘round on your diagnostic journey.

Mary

[madmelissa]

Shell,

I too have had a similar burning sensation on my back - a bit lower than where my hug hits though, right at the bottom of my ribcage and just under, on the right side, that proceeded to wrap slightly around the front. As you said, it was around the same time, and close to the same place, but not exactly, as my hug. My old neuro was aware of my hug but clueless about it. My GP is referring me to a new neuro who is an MS specialist, and I will be sure to explain it to him.

Ess,

Yes, I certainly am learning to be pragmatic! lol  The other day my GP and I were joking about how I would almost be willing to drink yak urine if he told me it would help my spasticity. He said he was really tempted to tell me it would work, just to see me do it! You have to love a GP with a good and slightly twisted sense of humor. I told him that's why I keep him around lol.

I just took my first dose of baclofen before bed, so I'm hoping it will have an affect on my hug - actually, I believe it did, though the relief I was feeling in my legs was much greater.

Keeping my fingers crossed the hug will keep easing up.

Thanks,
Melissa

[essdipity]

This question has been kicked around here for quite some time, and I too am not sure of the answer. Most sources call it spasms, yet I think they certainly can be paresthesias as well.

It does boil down to what works. As Shell says, try Lyrica, and if that works it's neuropathic pain, a kind of paresthesia. If a med like Baclofen works, then it is spasms. Have to be pragmatic, since getting rid of 'whatever it is' is the goal.

ess

[sllowe]

Hi Melissa!

I would say the hug is moreso a form of spasticity, but that's not to say you can't have the parathesia along with it. I've had both around the same time - not at the exact same time and place. Had terrible burning across my back for a few months along with bad sensations of water moving around in there. And, not so long before that had what I described to neuro as spasms in my back that came around to the front of my chest as well. Couldn't move or take a breath very easily w/out ceasing up.

They would be treated with different meds, i.e., something like baclofen for spasms and something like lyrica for parathesia.

Did you tell your neuro?
-Shell