Wednesday, March 11, 2009

The "MS Hug" Or Girdle

I didn't want to give this post a clever name because I want people out there who are in the same ship o' fools as me to be able to find someone else in the same predicament. Whether my evil plot (camera pans over to me manically laughing and rubbing my hands together)
will work remains to be seen...

The pieces of the puzzle are starting to fall together. I have had this back pain for over a week now and my kidneys are not behind it all (darn it! Should have known it couldn't be as easy as acute renal failure). What started as a pain in my back has slowly, insidiously, and evilly spread around my chest in a painful band that is ironically called "The MS Hug" -- a name that is a cruel attempt to make light of something that is not like any hug I have ever had or ever want to get. It took me a while to figure out that that is what is going on. I've never had this before and I had one heck of a time finding any information about it. I tried to find something about it in the Multiple Sclerosis Owner's Manual (not the official name) that I got from my local MS chapter shortly after diagnosis, but it only glossed over it and didn't go into any detail. In fact, I got the impression that it was just a tight band around the chest with no pain involved -- stupid owner's manual! I hauled out all the books I have about MS, which is too many in case you were wondering, and was able to get some vague answers that lead me in the right direction. I did a search on the Internet and tried all the "official" MS websites and again found glossed over definitions about this damn girdle that won't ease up. But the good news in this dung heap of a symptom, is that I did find good information from others with a way with words and having the same nefarious problem. My fellow MSers, I apologize for not coming to you first. I should have known "The Establishment" wouldn't know f*ck about sh*t when it comes to living in an MS wracked body. Am I coming off as angry and bitter? Good! Because I am! Pain has a way of making one cross and ready to be euthanized.

Anyhoo, on to my problem. I have this tight band around my chest, just under my breasts where my bra should be fastened but I can't wear a bra right now because it hurts too bad. It is an uber pins-and-needles sensation with stabbing pains down into my abdomen and lower back. My back hurts to the touch and even sitting here is killing my back. I have been taking hot showers to try and ease the pain and subsequently draining the hot water tank, much to my roomies pleasure. Heat is not my friend in general, but I am hogging the heating pad in an attempt to calm "The Hug." (My little sister uses the heating pad to keep her red eyed tree frog warm -- or did.) It makes me not want to eat anything because my abdomen feels too tight to put anything into it. I feel like I can't draw a deep breath because it is too constricted and if I try it only sends more shooting pains. It is miserable and underrated because this is a serious pain. The only good thing about it is that I don't feel my trigeminal neuralgia with so much pain in my back and chest. But instead of waking up with a hideous pain in my face, I am kept awake by this "hug" and made all the more irritable by my utter inability to get any rest. I already take an ungodly amount of Neurotin for my TN so I thought that would help all this girdling -- ha ha and HA! I am pacing the floor waiting for the time when my neurologist's office opens to see what can be done to give me some relief and I will not accept any brushing off of this new problem. She doesn't want me coming in there with a battling ram to get something -- ANYTHING -- to ease this pain. If she thought I was an obstinate pain in her behind before, she is going to get a huge surprise when she has to deal with me in pain that is reaching the 10 point on her scale o' pain. I'll keep you posted on whether she lives through this or not.

Love and kisses,
Blindbeard

P.S. This may go without saying but I like to say redundant things anyway: I would love to hear how anyone else dealt with this problem and what worked for them. I am on the verge of chewing through the pharmacy walls if they won't give me some kind of pain medicine and helping myself to anything I can find. Ahh, the joy of MS! The gift that just keeps giving.

26 comments:

Jen said...

Hey Blindbeard--

Another one of my convoluted, long replies I suppose:

I get the "MS Hug" myself and have thought about posting, but you've beaten me to the punch. I actually think it's kicking in a little as I write (sympathetically?) I don't know a lot of others who have this. Mine starts from the top of my boobs and extends down to my hips. I hear a lot of people get it in the lower torso, but mine tends to give me the most problems in the upper torso. Yeah, feels like a really tight corset and it's hard to sit in an upright position. I also get muscle spasms in my chest which sent me to the doctor because it felt like a frigging heart attack. Chest pains, burning, extreme tightening, and actual little individual muscle spasms that feel like my heart is spasming. Painful to turn from side-to-side.

My neuro put me on Baclofen (muscle relaxer) which seemed to help the muscle pain and tightening (took it for that episode but I'm not currently taking it.) The burning/neuropathic pain wasn't helped so much with the Neurontin, but I can't take too much of that stuff because it makes me completely loopy, so maybe the dose was too low.

Jen

pUNKrOCKfairy said...

Wow, that's lame. I haven't ever had it, but I had wondered what this infamous "hug" was really like. Sound like it's more craptacular than previously advertised.

I also take Baclofen for muscle spasms in my legs and it, surprisingly, helps a lot. You could try it?

Anonymous said...

MS Hug? WTF..what a freekin name for something so painful. I have SPMS and was DX'd back in 1997 (I think). Somethings u just wanna forget.

I've had this pain for about week, went to the ER,expained to them that YES I have MS as well as RSD. So the idiots see that my left lower leg has a lump (swelling and is hard).

OMG I must have an embolism. Idiots. I figured, hey maybe they are right this time, who knows, after they are the ones with the medical degrees.

Had all bloodwork, Xrays of lungs, chk'd for UTI, and who knows what else. So now I wait and wait and wait for dr to tell me whats wrong. Well the pain was unbearable and couldn't wait anymore. Told them they were all F'rs and left. They came running after me. "Oh Miss, U need to sign this paper as we will not b responsible if U leave now. Again I say, F U. The other hospital was a hell of a lot better than this one. "Well then why did U not go to that hospital?" Now I am freekin mad and in my usual calm voice I said. They F'n closed the old hospital and built this 'new state of the art hospital'.

Well I came home and they called me at 6 pm. OH U have to come back to emerg STAT and get an injection. WHAT? Well Miss we think u have a blood clot and PE. U need to come in NOW u may die.

Again DR have medical degrees so I go back and get 2 injections of blood thinners.

The also tell me that I have to come in next morning at 8 am for venous doppler as well as a spiral CT scan of lungs.

OK.

So what happened U ask? "well Miss all is well, u have no clots u may go home." but what about this pain? Is this my MS acting up again? "I don't know, go to your family dr"

So here I am in pain on the scale of 10 plus.

Last year they did the same to me. Same hospital, just opened, I was having speech problems, as well as bladder mishaps so I went. Idiots treated me for a stroke. Hubby kept telling them, she needs roids now she's having an MS attack.

NOOOOOOOO, we know nothing. We just suffer.

Sorry I am so pissed and hurting. Can't sit, can't lay down. Gotta see if I can sprout wings and float around.

MS is a bitch.

thanks.

LISA EMRICH said...

Thanks for providing this great description of the "hug." Having not experienced it myself, I would not have been able to be so graphic with the details.

Yes, I know I've been away for far too long. Just now catching up on a month's worth of blogging.

Young Wisdom said...

I just had this symptom on a trip to Aruba. I sat on a 4 hr plane ride and felt like I had asthma. I had chest pain and felt like breathing was extremely difficult. + I was hungry.I couldn't eat because I couldn't breathe. "Michelle" <-- that's what I call my MS, was under control . I really thought I had asthma until I went to the doctor who said I didn't have asthma and didn't know what was wrong with me. I saw your post and you described it perfectly! It happened about 3 more times on the trip and I've only had it once since then. Feels good to know what it was but not so good to have it. Hope Michelle doesn't hug me again anytime soon.

LivinTheDream said...

I too have "the hug". The only thing I have found to help is a heating bean bag and sitting or laying still. Seems that just moving sets it off. It comes and goes throughout the day. I am newly diagnosed and still stupid enough to hope that this too shall get better. Mine is on the left, just below my bra line and extends down to just below my waist. Feels like someone is squeezing me.

I'ts nice to find others that have a great sense of humor through this.

Sharon Anne Hill said...

Blindbeard, your descriptions meet mine exactly! It all started with piercing back pain - a spare tire feeling that turned into a corset, and eventually into a boa constrictor!

[All within 2 months] I've now seen my primary doc 3 times, the ER twice, a psychologist twice, plus my Gyno and Rheumy. Most had simply NO clues; several suspected panic attacks, even though I was quite calm with every visit - just couldn't fully take breaths - due to the painful constriction. The Gyno and Rheumy thought it was caused neurologically! Now I've got a long wait to see someone they think is worth waiting for.

The fact that I have drop foot, pins and needles, numbness, slurred speech, and double vision - won't get me into this "highly regarded" neurologist until OCTOBER. I will definitely print your blog post for him to READ!!!!

I finally Googled the words "MS and girdle" to find the name for what I am experiencing may be known as.

The fact that nobody with a medical degree knew, but those who live with it saddened me for them, yet didn't surprise me.

Rumor has it, no sufferer would name such monstrous symptoms - caused by the "HUG" - would call it as such!

I bet 'some doctor' other than Dr. Gregory House - even though he sports a cane himself, but one with a similar whacked sense of humor - is who started the "rumored" name, at some point.

Anyway thank you for your post [plus other sufferers' postings as well].

Warmly,
Sharon Anne

Sara said...

If I weren't crying in pain with this and googling on my iPhone I would write a longer post. I'm on 80 mg of baclofen per day and this is sometimes not too bad and sometimes, like now, utterly f*cking unbearable. The relief cure for the MS Hug is Vallium. The trick is getting an in-case-of-emergency prescription for it.

Anonymous said...

thanks to all of you fab ms-ers for these comments. i am not diagnosed and have been trying to research what else there is that could possibly cause this "hug" besides what i knew during my pregnancies as "braxton hicks" contractions. i've had a lower left side of my body hug for nearly 6 freakin weeks now and the neurologist i've been referred to still hasn't even given me a date. it's so nice to have somewhere to bitch about this. anyway, hug is probably the most annoying of symptoms but i've got a whole range of others going on right now too. damn those long waits...here's hoping i get an appt. soon. again, thanks for all of your humour and info!!
miche

Anonymous said...

Hello
Louise said
I am not certain if anyone is reading this blog but I happen to come to it today. I have been researching the MS Hug concept a I accidentally found some reading on the topic and was dumb founded as it is the first thing that I read in four years that actually describes what I have been living with since 2006. It has been a long haul of constant pain and taking narcotics to take the edge off. Never feeling near a solution or understanding of what I was feeling. Doctors looking at me dumbly not knowing what to make of what I was feeling other than naming it "neuropathy" or "neuropathic pain". It started after a bad case of ecoli which left me hospitalized with complications. I have no diagnosis but I do know that my life has not been the same since. Lots of mid rib/back pain, bra line and when it is bad it embraces me all around the mid to lower torso and I have visions of throwing myself off a building because it feels like there is no amount of narcotic that can bring me relief. I have since accumulated a long list of other symptoms (constipation which they call IBS and is blamed on the e-coli, huge bladder output, always on the can the second I sip water, ongoing pain, waking up with body/limb numbness and heaviness - which is freaky, fatigue, lessening physical activity, falling accidents - I can't tell if I am clumsy or what etc...all of which cause interrupted sleep and so I get to take zoplicone and even with this sleeping aid my symptoms insist on waking me up at least 2 to 3 times a night. They say I am stressed and so I just keep working because I am only stressed. I know better but I still buy into the stress theory. Now my doctor tells me you are depress because of your physical symptoms and not depressed and therefore having these symptoms. It took her four years to come to this conclusion! I could have told her that and actually did. If I had no pain, I would have no worries and little stress. I can't do many things that are physical (digging, shoveling, lawn mowing, vacuming etc). I do but then my pain gets really bad. It is just nice to know that I am not entirely crazy as this pain does drive me crazy! This pain may be MS Hug. So I saw a neurologist (finally), I will make her a map to show her the progression of things. No one tells me I am imagining this pain but no one has called it much of what would make sense. I have a brain scan in two weeks...as crazy as it sounds, I really hope they find lesions because that would answer many questions. My doctor did MRI on the upper, lower and mid back...everything seemed fine except for some compression...oh the idiot didn't get a shot of the actual area that is hurting me the most! I saw a gastro guy, a bladder guy (he said it was some women thing as my reason for incontinence and told me to not get up too soon and make sure I was done before getting up from the toilet. and I have an overactive bladder - really I even knew that I just want to know why I have an output of 3+ litres a day when I don't even come close to drinking that much), I saw a rheumathroid arthritis guy who said I had sligh scoliosis of the spine and bursitis of the hip for which he could give me a courtesone shot if I wanted. I went to a rehab specialist a year after my complications to ecoli and she tried to inject some stuff at about T7, 8, 9 but no result. I go to the pain clinic and they torture me with fluroscopies, injecting steroid, confusing the nerves etc and limited results. THe only thing that feels awesome is when they do the local anesthetic of the area. I could move mountains because I feel nothing. So hence my frustration!

Anonymous said...

Glad to have found you all. I've fought with the HUG for years. Do you guys have trouble getting a deep breath? Like you have to force yourself to yawn to get comfortable? So far they haven't found any spinal lesions, but my neuro says they are hiding. Or maybe it's just one devil hiding. Thanks for this subject. It's so important to all of us to "connect" with each other.

Anonymous said...

I have not been diagnosed yet, but all of the symptoms I have had over the past year + are leading to it. Unfortunately I see military doctors, so this could take a while.
I have had several symptoms that are indicative of MS. However, since the main topic here is the MS hug, I will stick to the specific symptoms that may or may not be the "hug".
I have had gallbladder and kidney pains that come and go. I have had 3 tests on my gallbladder (two ultrasounds and one other test) and 2 CT scans with dye on my kidneys. They were not able to find anything that would cause this pain.
Does anyone think this may be the notorious MS "hug"?

Anonymous said...

I have had this since March and its now October. It is constant and painful.I have a spinal lesion. It never goes away. My neurologist doesnt know what to do with me. Now I am off to another specialty Hospital so they can tell me they dont know how to make it go away. Guess Im stuck with this forever. a Lyrica, 2 lorazepam, 3 clonazepam & 3 beers helps. Yes. Taken all at the same time. Oh yeah and weed helps too, too bad its illegal here.

Anonymous said...

I have had several episodes of MS Hug previously but always involving pain under the front of my ribcage running all the way around. Now lately I am having horrific pain in my upper back between my shoulderblades which eventually makes it to the front. I feel like my ribs are dislocated and it hurts whether I breathe or not but much worse when I breathe. I had my pain management doc up my topomax to 75 mg from 50 and my zanaflex from 4 mg to 6 mg 2 x dy with one soma at night to sleep taken with one benadryl and am getting some relief. In addition I take 2 - 10 Mg Lortabs 3 x dy. I take 1000 mg evening primrose 3 x dy, 2 550 mg ginger 2 or 3 x dy, and 2 500mg turmeric 2 or 3 x dy. I am not able to take ibuprofen or naproxen due to severe tinnititus or I would. I was so lucky my pain doc knew what it was because I was scared I was getting a heart attack. Best of luck.

Anonymous said...

L.O.L. Blindbeard! I LOVE your MSer humor! I hate having MS, but I always make fun of my MS and say stuff like the "hug" evilly wraps around my ribs and it's the f*cking deathgrip from hell. Gotta love the fatigue and vertigo, too. The strict diet for MS totally sucks, too. But it's either quit the caffeine and pizzas or have crappy MS! I'm all MSed-up! I love your site!!! You made my day.

Anonymous said...

I am glad I looked up the things on MS. I have it for about a year now! When I was told I had it was really shocked to tell ya the truth! I went to the ER I thought I had case of the FLU I couldn't walk hardly and throwing up! The ER doctors did some test on me ran a MRI and seen the MS. I was told to see this Neuro doctor. He did a Spinal Tap and some other test and comfirmed YES I had MS.

Now days I am experiencing this chest pain and tightness in my chest I thought I was having bronchitis or worse a Heart attack! See I am an EMT have been for 16 years.I also had a really bad accident just before I got this diagnosed with MS and all to be said I had a really bad headache that day at work and on my way home after I had a beer not even one at that I had the accident and make long story short my doctor for my MS agreed with me that my reason for my accident was my ms not the beer. I didn't get charged with DUI or anything like that thank god! In fact my Doctor said after seeing my MRI and seen my lesions I have had MS for about 5 to 6 years. Just thought my bad headaches were migraines like the night of my accident! Now back to my now days I can't live from the past right? Any ways I am glad I seen this and I understand what is going on. I am not on any meds for this I just take advil for the pain and use heat to ease it. I can't get in to see my Neuro doctor yet. Which sucks! But I know he will make it up to me he always does!

I just hope this will be over and SOON! Ms is a bitch I agree and I sometimes thing it runs my life. I try NOT to let it! I guess I try to be strong. I let it take me out of my favorite job. which was my EMS work. Yes I am younger I am 35 but it just makes me depressed some days. I still drive now days but only when my MS isn't messing with me. From the headaches to dizzy to now this issue. I am on "Rebiff" a shot I do 3 times a week. It's the highest dose made for ms.

Any ways I am done talking sorry so long winded I just needed to vent and say thanks for this post it help me know alot of things.....

Sincerely,
Jennie ,Ohio

Anonymous said...

I have been experiencing the "hug" since December. I have had fatigue, nausea, numbness and headache along with it. The hug is so tight I can hardly eat or sleep. MRI of brain and spine were clear so they say no MS. I know this is the MS HUG, nothing else fits. Started having stiffness and burning in both arms. Now what? Any recommendations? Frustrated and starting to feel like nobody is listening.

Jan said...

Hi! I have MS, and I recently had a bad bout of pneumonia. The day after my symptoms finally all eased up, I had an intense burning pain that started in my back on the left side and went around to the front, like a line was drawn down the middle of my body. It got so bad that I went to the ER, and after a CT scan, they said it was GAS and possible constipation! Stupid idiots! They gave me a pain shot and two different laxatives. Well, I spent the next two days in excruciating pain AND on the damn toilet! My pain got worse, I was totally exhausted. My doctor sent me to the urologist (no kidney problems), the orthopedic doc (no disc problems), and finally the other day, I was able to get into my neuro. She said, oh oh! MS Hug! I had my 3-hour MRI the other day of the head and spine, should get the results soon. The tech guys told me I was a good girl for staying still for so long (I'm 57 for Christ's sake!!). This stupid disease makes me crazy! On top of all of this, my family (sisters) just say, "Don't worry, this too shall pass and you'll be fine, just be positive." Sheesh!! I don't understand how people can be so stupid and inconsiderate! This disease sucks, it hurts, and they don't understand why I can't control it! Oh well, thanks for letting me vent! I know others here know exactly how I feel! Jan

Jenni said...

Hi another Jenni here, this time in Scotland. Diagnosed in 2003 and have had a mild version of the "hug" in the past when I overdo things( that is try to do normal stuff like everyone else). Today is more of the full blown " hug" you guys are describing and it was only my worsened monocular diplopia which drove me to the Internet which led me to you guys. So it's not acid and the PPI from my Dr probably won't help!
Great to have a place to find out what is really going on with the latest twist and turn in this crazy curse of a disease.
Your blog has given me some sanity tonight. Thanks all x

Anonymous said...

why do doctors not recognize this?

cheytagliaferro said...

Do you have MS? Do you just have the one spinal lesion? Any on your brain?

cheytagliaferro said...

I have this same exact pain that last for two to five minutes then goes away. Will happen two to three times in same hour then not again for a week or two weeks or a month or two.

Debby Rossouw said...

Sure is and those drs are idiots

Debby Rossouw said...

Because they are morons, greedy and exceedingly lazy.

Julie McDaniel said...

Did you ever get a diagnosis?

cheytagliaferro said...

No MS dx yet.... But I did have pancreatitis... That was most likely the cause of the pain... Hope you are well...