MS Hugs

[Shiela]

I've had the hug for two years, almost always at night. Sometimes it's really bad and keeps waking me up all night, sometimes it only wakes me up once for a few minutes; sometimes I'm awake for hours. At first it only felt substernal and on my left side. I was convinced it was my heart. Then it also came on the right side. The doctors looked at me like I had two heads...it moved?! (come on). It stayed like that for months and then one day it grew down to my diaphragm and then below my bellybutton. By that time I was seeing a neurologist and had been dismissed by the cardiologists. I told him about this 'death grip' every night in my abdomen. He knew right away...the 'MS hug'. It was comforting to have the validation and someone knowledgeable in my court, but I wish it wasn't there. I'm still seeking relief. My neuro is trying to build up my dose of neurontin and I am on the highest dose of Baclofen--we're not there yet, but we have a ways to go with the neurontin.

[juliebrush]

I have had this for two solid years. 24/7. It wakes me up at night with pain. At first I thought it was my stomach burning so bad that I could feel it through to my back. $1200 worth of testing later, nothing is wrong with my stomach. Pretty soon I realized it was coming from my back. Painful burning, doubled over, needing to vomit, like I was wearing a tight, tight belt. X-ray of my back showed nothing wrong.

Soon I learned that stress expanded the pain from right under my breasts (where I imagine my stomach is) to my armpits down to my hips. Like wearing an iron girdle that gets tighter and tighter, so I can hardly breathe. Excruciating pain. Kill yourself pain. I was on Mobic for pain for over a year. Different muscle relaxers. My neurologist had no clue--I mentioned MS hug and he's never heard of it. I am now living on muscle relaxers. Valium works well but you get a tolerance and need a higher and higher dose, which isn't easy to get. I take something called Tizanidine (?) that dulls down enough that I can function. If I take a half I can stumble around. If I take a whole I have to go to sleep.

Is there no solution for this symptom? Because this is not a gentle pressure or tingling for me. This feels like I am being squeezed in half by a belt, like something from a "Saw" movie. I did a three-day stint of oral prednisone with no effect. I'm starting to think a longer stint of IV steroid--which I hate steroids more than anything, but I cannot continue like this.

Okay,I hear ya man. Listen. Do you drink a lot of coffee,do u drink alot of soft drinks and if so,what kind? Tell me how much water you drink. Lets discuss.

[ollieopps]

I have the MS hug on my right arm - it feels like a tight blood pressure cuff on my upper arm, about where you would have a blood pressure cuff. I can't say it's painful, but it's very apparent to me when I have it. I pull at clothing, rub the skin - thinking that will make a difference or shirts are too tight, although much of the time I don't have any material touching the skin.

[mtnwillow]

Feel better soon. Muscle relaxers, masauge and ice do better for the HUG in my experience. Husband and three kids? You need a break. Can you go somewhere? Even a motel room so you are alone with no distractions just time to heal?

[Hawkgirl]

1936siol, on a good day mine is like a tight, tight belt right under my boobs. If I get stressed out (with a flaky husband and three kids, happens pretty frequently) it spreads up and down from armpits to hips.

I am going to the neuro today to beg for the steroids. Also to beg for a bigger dose of Valium. Steroids make me SO SICK but I'm praying if I get a big whack of steroids, it will snap my stupid nerves out of this rut and make the pain stop. If you're a praying person, please pray for me! I will pray for all of you, too! May we find relief. May they find a cure!

[1936siol]

MS Hug

I find it a real education how many types of Hugs we all have. Sometimes mine goes all the way down to my hips. Sometimes it is a narrow band any where along the way from top to bottom. It sounds like it is different for almost everyone. Sometimes it is a wide band.

Lois

[Lillyheart]

I have had this for two solid years. 24/7. It wakes me up at night with pain. At first I thought it was my stomach burning so bad that I could feel it through to my back. $1200 worth of testing later, nothing is wrong with my stomach. Pretty soon I realized it was coming from my back. Painful burning, doubled over, needing to vomit, like I was wearing a tight, tight belt. X-ray of my back showed nothing wrong.

Soon I learned that stress expanded the pain from right under my breasts (where I imagine my stomach is) to my armpits down to my hips. Like wearing an iron girdle that gets tighter and tighter, so I can hardly breathe. Excruciating pain. Kill yourself pain. I was on Mobic for pain for over a year. Different muscle relaxers. My neurologist had no clue--I mentioned MS hug and he's never heard of it. I am now living on muscle relaxers. Valium works well but you get a tolerance and need a higher and higher dose, which isn't easy to get. I take something called Tizanidine (?) that dulls down enough that I can function. If I take a half I can stumble around. If I take a whole I have to go to sleep.

Is there no solution for this symptom? Because this is not a gentle pressure or tingling for me. This feels like I am being squeezed in half by a belt, like something from a "Saw" movie. I did a three-day stint of oral prednisone with no effect. I'm starting to think a longer stint of IV steroid--which I hate steroids more than anything, but I cannot continue like this.

Hawkgirl, I have it as bad as you, but not as long. It's horrible... Don't know how much longer I can deal with this.

This is the worst symptom I've ever had.

[salamandertom]

Mine can be a couple of different things. Like muscle spasms in my back and ribs like in a band, but it goes all the way around and squeezes - mine doesn't always make me feel like I cannot breath. Mine is typically higher - like bra line - so it feel more like a mock heart attack. First time was pretty scary. My BP gets really high too - because it really hurts. I also can get them around my middle too - like a girdle.

[Hawkgirl]

I have had this for two solid years. 24/7. It wakes me up at night with pain. At first I thought it was my stomach burning so bad that I could feel it through to my back. $1200 worth of testing later, nothing is wrong with my stomach. Pretty soon I realized it was coming from my back. Painful burning, doubled over, needing to vomit, like I was wearing a tight, tight belt. X-ray of my back showed nothing wrong.

Soon I learned that stress expanded the pain from right under my breasts (where I imagine my stomach is) to my armpits down to my hips. Like wearing an iron girdle that gets tighter and tighter, so I can hardly breathe. Excruciating pain. Kill yourself pain. I was on Mobic for pain for over a year. Different muscle relaxers. My neurologist had no clue--I mentioned MS hug and he's never heard of it. I am now living on muscle relaxers. Valium works well but you get a tolerance and need a higher and higher dose, which isn't easy to get. I take something called Tizanidine (?) that dulls down enough that I can function. If I take a half I can stumble around. If I take a whole I have to go to sleep.

Is there no solution for this symptom? Because this is not a gentle pressure or tingling for me. This feels like I am being squeezed in half by a belt, like something from a "Saw" movie. I did a three-day stint of oral prednisone with no effect. I'm starting to think a longer stint of IV steroid--which I hate steroids more than anything, but I cannot continue like this.

[4boysmom]

Can they feel like a charlie horse in your midsection, and be really painful?

[emaugust]

MShug affects me a bit differently as well. It doesn't hurt - it feels one of two ways:

1. Like I am wearing a girdle. I feel really tight in my midsection like my body is being squished... but I almost find this to be comforting.

2. Like someone wrapped a belt around my thigh and was yanking it tight. This one is more bothersome. The 'Area" that I feel the hug in is very specific and "thin" thus the Belt comparison.

[Spydre]

The MS hug I don't consider as nervewracking as some other symptoms - like the nerve pain in my skin, I think it's called dysthesia or something like that. A burning pain. With that, I can't get comfortable - it hits my back, so there is no getting comfortable, and it hits my arms, so that's what gets me into anxiety attacks. The MS hug, well, I can reason that out - it's not as painful for me as the dysthesia, and I know it'll go away.

[buckfield]

Sometimes weeks,sometimes a day. But do not panic,hydrating seems to help. And also,if u r not restricted from using magnesium,got to health food store,get something called "calm".....mix it in sum water b4 bed,take it nightly until loose. It relaxes the muscles,of course check with ur doc,if they even know what it is. but,do not panic. i promise u it is okay.

Thanks juliebrush, these symptoms can be nervewracking at times.

[1936siol]

MS Hug

It's hard to believe some of you seem to have the MS Hug for as little as you do. Mine has been continuous for 40 years but I am lucky with some of the other things you have.

Lois

[Sequoia]

Sometimes weeks,sometimes a day. But do not panic,hydrating seems to help. And also,if u r not restricted from using magnesium,got to health food store,get something called "calm".....mix it in sum water b4 bed,take it nightly until loose. It relaxes the muscles,of course check with ur doc,if they even know what it is. but,do not panic. i promise u it is okay.

By "loose" you mean until your stools are loose, right?

A less expensive, but just as effective, alternative to Calm is plain Magnesium Citrate powder (not tablets, not capsules) which is also stirred into water and drunk before bed. I use it for spasticity (legs, shoulders), and it does help.