MS Hugs

[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!

[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?

[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.

[billiejeane]

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.

[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.