NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)
-   Multiple Sclerosis (https://www.neurotalk.org/multiple-sclerosis/)
-   -   Small whine . . .Just have to ask this (https://www.neurotalk.org/multiple-sclerosis/43121-whine.html)

tkrik 04-08-2008 11:24 AM

Small whine . . .Just have to ask this
 
I'm having an exacerbation right now. It's been going on for 1 1/2 weeks. It is a somewhat painful one as I do have the hug something terrible.

Although I have been through the hug many times before, I don't remember it being quite like this. I can deal with some of the physical carp - numbness, spasticity, etc. But this hug has me feeling so, so . . . sick.

Do any of you experience that real sick feeling while in an exacerbation? I do have an appointment with the uro today which is a good thing as my bladder is going nuts. When I was at the neuro's last week they wanted me to get my bladder checked for an infection. Fortunately, I already had this appointment scheduled.

So, do you ever get that feeling? Also, when coming out of the flare do you get that fluctuation of feeling ok and then feeling really sick and then feeling ok . . .?

sugarboo 04-08-2008 11:50 AM

I'd hug you but sounds like you've had enough ;) Hope you feel better soon!!!

lady_express_44 04-08-2008 12:48 PM

Yep, I do tkirk.

I just wanted to give you a bit of info on the hug, first:

"What Causes the "MS Hug?"
It is caused by a lesion on the spinal cord and is technically classified as a neuropathic pain called a “paresthesia,” which refers to any abormal sensation. The sensation itself is the result of tiny muscles between each rib (intercostal muscles) going into spasm. These muscles have the job of holding our ribs together, as well as keeping them flexible and aiding in movement, like forced expiration.

What Does It Feel Like?
Like many MS symptoms, the “MS hug” feels different for different people – it also feels different in the same people on different days or at different times of day. It can be:

- As low as the waist or as high as the chest; rarely it can be felt as high as the shoulders and neck
- Focused in one small area (usually on one side or in the back) or go all the way around the torso
- Worse when fatigued or stressed
- Present in “waves” lasting seconds, minutes or hours or can be steady for longer periods of time
- Described as sharp pain, dull pain, burning pain, tickling, tingling, a crushing or constricting sensation or intense pressure
- How Severe Can It Get?

Some people experience difficulty breathing or painful breathing, so severe that it is often perceived as a heart attack or panic attack."

http://ms.about.com/od/signssymptoms/a/ms_hug_pain.htm

As far as feeling sick, this can be as a result of the pain (nausea, exhaustion from it, etc.) or directly because of the spinal lesion itself. The way I understand it, if our lesion is in T-6, it will often affect our stomach in particular (and can cause the symptoms of anything listed below that level too), as per the following:

"RE: Potential damage; based on lesion location

SPINAL COLUMN

C1: blood supply to the head, pituitary gland, scalp, bones of the face, inner and middle ear, sympathetic nervous system, eyes, ears
C2: eyes, optic nerves, auditory nerves, sinuses, mastoid bones, tongue, forehead, heart
C3: cheeks, outer ear, face, bones, teeth, trifacial nerve, lungs
C4: nose, lips, mouth, Eustachian tube, mucus membranes, lungs
C5: vocal cords, neck glands, pharynx
C6: neck muscles, shoulders, tonsils
C7: thyroid gland, bursa in the shoulders, elbows, ulnar nerve

T1: arms from the elbows down, including hands, arms, wrists and fingers; esophagus and trachea, heart
T2: heart, including its valves and covering coronary arteries; lungs bronchial tubes
T3: lungs, bronchial tubes, pleura, chest, breast, heart
T4: gallbladder, common duct, heart, lungs, bronchial tubes
T5: liver, solar plexus, circulation (general), heart, esophagus,
stomach
T6: stomach, esophagus, peritoneum, liver, duodenum
T7: kidneys, appendix, testes, ovaries, uterus, adrenal cortex, spleen, pancreas, large intestine
T8: spleen, stomach, liver, pancreas, gallbladder, adrenal cortex, small intestine, pyloric valve
T9: adrenal cortex, pancreas, spleen, gallbladder, ovaries, uterus, small intestine
T10: kidneys, appendix, testes, ovaries, uterus, adrenal cortex, spleen, pancreas, large intestine
T11: kidneys, ureters, large intestine, urinary bladder, adrenal
medulla, adrenal cortex, uterus, ovaries, ileocecal valve
T12: small intestine, lymph circulation, large intestine, urinary bladder, uterus, kdneys, ileocecal valve

L1: large intesine, inguinal rings, uterus
L2: appendix, abdomen, upper leg, urinary bladder
L3: sex organs, uterus, bladder, knee, prostate, large intestine L4: prostate gland, muscles of the lower back, sciatic nerve
L5: lower legs, ankles, feet, prostate

Sacrum: hip bones, buttocks, rectum, sex organs, genitalia, urinary bladder, ureter, prostate

Sacral Plexus: Forms the sciatic as well as other nerves that go to muscles, joints and other structures of the legs, knees, ankles, feet and toes

Coccyx: rectum, ****"

(Sorry, don't know who to credit for this info ...).

Cherie

tkrik 04-08-2008 02:02 PM

Cherie & GJ - Thanks

I am sure a lot of it has to do with the amount of pain mixed in with fatigue. Since I am now improving it is waxing and waning and was curious if others had that same waxing and waning.

BTW - I did not get any good drugs at the neuros. LOL. Just increasing the Neurontin. Once that kicks in I do somewhat better and am just left with muscular pain which I am treating with Advil, Epsom salt baths, and ice. It helps.

weegot5kiz 04-08-2008 06:23 PM

Tk the hug, well first, this one is for you :hug:

the hug I get just makes me labor at breathing, hard to describe like someone is resting on my chest,, but not like when you have a viral infection where the tightnes is inside the lung, this is like wrapped around me squeezing me, as for getting sick not sure am on so many pills been taking perscribiton pepcid, with my meds this week, sorry I cant be better help on that

Hope you get to feeling better real soon maybe our late night cruise wasnt a good idea :thud:

barb02 04-08-2008 06:46 PM

As I mentioned on insights I also have the same problem on my left side -- from my bra line down to the waist. You could draw a line down the middle of me (front and back). This was my first symptom last winter and it has never gone away. I am also experiencing some bladder problems -- sense of bladder urgency. This also comes and goes and I have not had a bladder infection. I am not sure if I am having a flare or not -- no new symptoms but all of my new ones are bothering me more than they were prior to my infusion last Wednesday.

lady_express_44 04-08-2008 07:02 PM

BTW, bladder and bowel troubles, as well as numbness from the torso to the feet, are common in this type of attack. It doesn't necessarily indicate infection, but you always want to check that first.

***Please do not leave the potential for infection untreated though; with fever reducers and any other meds needed to treat it. Spinal lesions do not like increased body temp, in my experience.***

How did it go at the doc's today?

The hug might last for most of 4 - 6 weeks, then start to subside over the next 4 - 6 weeks. It really depends on how severe the attack pans out to be, i.e. which parts below the torso are ultimately affected. It has never happened to me that I (only) get it in the torso, it usually spreads up or down (or both) from where-ever it starts. Hopefully that won't be the case for you though . . .

These attacks just don't resolve as quickly as "normal" attacks . . . (just so that you don't get scared if things continue to escalate over the next few weeks). The good news is that the hug is probably as bad as it is going to get. :hug:

Cherie

weegot5kiz 04-08-2008 07:09 PM

this is how this last flare started too barb but wasnt sure how to view things because I have had this all happen before so its not new except, its all on the wrong side of my body this time not left side but rather right side.

Barb you described the way it started for me to a tee almost, drawing a line from front to back(minus the bra part) along with my new friend chucky the headache, and thats when i thought well its on the wrong side call neuro

try to rest easy TK

suzyqz_2007 04-08-2008 07:14 PM

Quote:

Originally Posted by lady_express_44 (Post 254315)
Yep, I do tkirk.

I just wanted to give you a bit of info on the hug, first:

"What Causes the "MS Hug?"
It is caused by a lesion on the spinal cord and is technically classified as a neuropathic pain called a “paresthesia,” which refers to any abormal sensation. The sensation itself is the result of tiny muscles between each rib (intercostal muscles) going into spasm. These muscles have the job of holding our ribs together, as well as keeping them flexible and aiding in movement, like forced expiration.

What Does It Feel Like?
Like many MS symptoms, the “MS hug” feels different for different people – it also feels different in the same people on different days or at different times of day. It can be:

- As low as the waist or as high as the chest; rarely it can be felt as high as the shoulders and neck
- Focused in one small area (usually on one side or in the back) or go all the way around the torso
- Worse when fatigued or stressed
- Present in “waves” lasting seconds, minutes or hours or can be steady for longer periods of time
- Described as sharp pain, dull pain, burning pain, tickling, tingling, a crushing or constricting sensation or intense pressure
- How Severe Can It Get?

Some people experience difficulty breathing or painful breathing, so severe that it is often perceived as a heart attack or panic attack."

http://ms.about.com/od/signssymptoms/a/ms_hug_pain.htm

As far as feeling sick, this can be as a result of the pain (nausea, exhaustion from it, etc.) or directly because of the spinal lesion itself. The way I understand it, if our lesion is in T-6, it will often affect our stomach in particular (and can cause the symptoms of anything listed below that level too), as per the following:

"RE: Potential damage; based on lesion location

SPINAL COLUMN

C1: blood supply to the head, pituitary gland, scalp, bones of the face, inner and middle ear, sympathetic nervous system, eyes, ears
C2: eyes, optic nerves, auditory nerves, sinuses, mastoid bones, tongue, forehead, heart
C3: cheeks, outer ear, face, bones, teeth, trifacial nerve, lungs
C4: nose, lips, mouth, Eustachian tube, mucus membranes, lungs
C5: vocal cords, neck glands, pharynx
C6: neck muscles, shoulders, tonsils
C7: thyroid gland, bursa in the shoulders, elbows, ulnar nerve

T1: arms from the elbows down, including hands, arms, wrists and fingers; esophagus and trachea, heart
T2: heart, including its valves and covering coronary arteries; lungs bronchial tubes
T3: lungs, bronchial tubes, pleura, chest, breast, heart
T4: gallbladder, common duct, heart, lungs, bronchial tubes
T5: liver, solar plexus, circulation (general), heart, esophagus,
stomach
T6: stomach, esophagus, peritoneum, liver, duodenum
T7: kidneys, appendix, testes, ovaries, uterus, adrenal cortex, spleen, pancreas, large intestine
T8: spleen, stomach, liver, pancreas, gallbladder, adrenal cortex, small intestine, pyloric valve
T9: adrenal cortex, pancreas, spleen, gallbladder, ovaries, uterus, small intestine
T10: kidneys, appendix, testes, ovaries, uterus, adrenal cortex, spleen, pancreas, large intestine
T11: kidneys, ureters, large intestine, urinary bladder, adrenal
medulla, adrenal cortex, uterus, ovaries, ileocecal valve
T12: small intestine, lymph circulation, large intestine, urinary bladder, uterus, kdneys, ileocecal valve

L1: large intesine, inguinal rings, uterus
L2: appendix, abdomen, upper leg, urinary bladder
L3: sex organs, uterus, bladder, knee, prostate, large intestine L4: prostate gland, muscles of the lower back, sciatic nerve
L5: lower legs, ankles, feet, prostate

Sacrum: hip bones, buttocks, rectum, sex organs, genitalia, urinary bladder, ureter, prostate

Sacral Plexus: Forms the sciatic as well as other nerves that go to muscles, joints and other structures of the legs, knees, ankles, feet and toes

Coccyx: rectum, ****"

(Sorry, don't know who to credit for this info ...).

Cherie


I just wanted to thank you for explaining this. :hug:

I have numerous lesions on the brain (at least 13) and I have had an mri of the spine but it didn't show any lesions...is it still possible to feel the "hug"?

Years ago (I'd say about 10 or 15 years) I was having terrible pain in my rib cage area. The drs couldn't understand what was going on except that I had inflamation in the areas between the ribs. After endless tests that came back negative they decided for pains sake the best thing was cortizone (sp?) shots. OMG those were worse than any pain I was having! I had 6 shots at one time in my left rib cage. I wonder if maybe that was one of those times when my MS symptoms started to appear?

suzyqz_2007 04-08-2008 07:17 PM

Quote:

Originally Posted by tkrik (Post 254268)
I'm having an exacerbation right now. It's been going on for 1 1/2 weeks. It is a somewhat painful one as I do have the hug something terrible.

Although I have been through the hug many times before, I don't remember it being quite like this. I can deal with some of the physical carp - numbness, spasticity, etc. But this hug has me feeling so, so . . . sick.

Do any of you experience that real sick feeling while in an exacerbation? I do have an appointment with the uro today which is a good thing as my bladder is going nuts. When I was at the neuro's last week they wanted me to get my bladder checked for an infection. Fortunately, I already had this appointment scheduled.

So, do you ever get that feeling? Also, when coming out of the flare do you get that fluctuation of feeling ok and then feeling really sick and then feeling ok . . .?

:hug: i hope you are feeling better. unfortunately i never really understood if i was having a flare or just a bad day or what. i have days where i can feel wonderful one minute then absolutely awful the next. i can't remember a day where i woke up feeling great and made it the entire day feeling great. like i told my neuro...i don't know what normal is anymore. :(

tkrik 04-08-2008 07:26 PM

Cherie - they do take a while to go away. The last time it was this bad was about a year ago. The only thing I have below my hips is increased spasticity and sensitivity to touch. I am taking that as a good thing.

The uro appointment for today was to get some baseline studies done. I had made the appt several weeks ago. It just happens to be while I am in a flare. I definitely have a neurogenic bladder (and bowel) and they are going to do the CMG tomorrow, kidney ultrasound on Thursday, and a cystoscopy on the 29th. They will also send the urine sample over for a culture to make sure I don't have an infection. (I don't think I do as I don't have symptoms of that)

Barb - Like you, this was one of my presenting symptoms several years ago. It took 3 years for them to diagnose me with MS (although my PCP suspected it right along). I have to say as the years go by the discomfort is almost constant. (Thank God for Neurontin.:D) The funny thing though is that I forget what it feels like when it is really bad. Kind of like childbirth. You forget the pain.

Frank - I hope you get though yours quickly as well. The neuro actually did mark it and it follows right along the lines of about T5 through T7 curving down just like the nerves. (Cherie, I think it was you that posted that picture wasn't it?) Hang in there cyber-flare-brother.:D

tkrik 04-08-2008 07:31 PM

Quote:

Originally Posted by suzyqz_2007 (Post 254557)
i have days where i can feel wonderful one minute then absolutely awful the next. (

It's so frustrating isn't it? You can't fully plan. Everything is tentative. UGH!

I too had numerous tests done including an EGD which showed sensitivity of the nerves which was causing stomach spasms. Now, thanks to all my board buds and my new neuro, I understand what is causing all of this.

lady_express_44 04-08-2008 07:47 PM

Quote:

Originally Posted by suzyqz_2007 (Post 254556)
I just wanted to thank you for explaining this. :hug:

I have numerous lesions on the brain (at least 13) and I have had an mri of the spine but it didn't show any lesions...is it still possible to feel the "hug"?


You are welcome.

Spinal lesions can hide very well, but I think you have to have them to get the hug. Most often there will be considerable "numbness" (that hurts a lot :rolleyes:) too.

Frank/Barb, I've had the split too. So far I've had it where:

- one side went numb from my foot to mid-breast, then a week later the other side did the same thing. Until it did though, I could draw a line down the center (left side only) and through my breast (bottom numb only) that was numb/not numb. This did not include my hands.
- both feet went numb, and it progressed to above my breasts; same on either side. This time it included my hands and tips of my ears. It also affected several internal organs.
- one side only, starting in the chest and working it's way down to include everything to foot (eventually)
- torso for a few weeks (only to my hips), then my mouth, then patches in the legs, then feet (but still not my hips). As the torso was letting up, the legs were getting worse, then the torso took off again to include my neck, scalp, ears.

Life is like a box of chocolates . . .

Cherie

tkrik 04-08-2008 07:54 PM

Chocolate? Did you say chocolate? I'd like some. LOL.

It definitely affects the internal organs. Not fun. I am still on a smoothie diet. LOL.

Numbness, tingling, inflammation, spasms, and extreme sensitivity to touch are some of the things that I can think of that go along with this.

weegot5kiz 04-08-2008 08:10 PM

yeah cherie that was kind of weird Barb explained it so well, I was trying about 3 weeks ago to explain it to the doc, I didnt know that is the MS HUG now I do , I always just say tightness in the chest and difficult breathing,

thats what made me think of it too, I used the phrase to the neuro draw a line from here to here on front and back of my body,

If I could ask you something cherie, i mentioned it around 4 am this morning on here and dont remember where:eek: there's a big surprise.

The period inbetween flares, relapse's whatever term you want to use, is there any terminology for the false sense of security between flares, I would like to read any info about it from a pysch aspect.

I will try to explain this, so here goes, its almost like I forgot some of my SX? does that make sense or am i just blocking it out, sort of like a false security like oh good flare up is gone so is MS. this has just been such a weird flare, every time my flares have always been on left side, and this time its all backwards, its all on right side, I pretty much have myself convinced from a mental standpoint I am so off guard this time because I have put the MS far enough back in my mind and dealt with other issues and centered on those instead, but not sure I am that bright:Ponder:

would be interested in reading about this, it has to be a common thread to MS that false sense of oh good its finally gone. sorry to babble :hit-safe:

Flare Sis you hang in there too, first one out of it, gets to drive the little red corvette

DM 04-08-2008 08:13 PM

Thanks for the great explanation, Cherie

AND, T~~ feel better soon, OK>

tkrik 04-08-2008 09:06 PM

Frank - I have that false sense a lot. I also think we forget about the pain. Like my last flare, I had TN but I can't remember the pain and facial spasms. When I get it again, I'll remember. Again, like childbirth. We forget the pain. I think if we didn't we would have less children.

Koala77 04-08-2008 09:09 PM

I'll apologise in advance here Tkrik, as I'm hijacking your thread for just a minute. Please forgive me. I hope you don't mind just this once, seeing my following question is for Cherie and the topic is so similar to your own.

I too thank you Cherie for that great explanation....but....I've been suffering from something that's more like acute short stabs of pain in the intercostral spaces/muscles.

In your explanation you mentioned the following, and I've only quoted the relevant part from your post...

Quote:

Originally Posted by lady_express_44 (Post 254315)
What Does It Feel Like?

- Described as sharp pain, dull pain, burning pain, tickling, tingling, a crushing or constricting sensation or intense pressure....



On another website I'd asked about the rib pain that I suffer because it really is debillitating while it lasts, but as it's only for a few seconds at a time, no-one seems to think it's anything to be concerned about.

I did break 4 ribs in a fall a few years ago in that same area, and my pain is now said by other MSers who I've asked, to be solely due to spasms in the Trigger Points and that I should see a Myofacial Pain Therapist! (I've actually not heard of one here in Australia)

My own doctor has dismissed my complaints of pain in the ribs when I mention it, even though the pain is agonising and makes me scream out on movement. He says that I probably trapped a nerve during the bone healing process.

Could this old injury be acting as a trigger for MS pain or the hug, or is it more likely to be due to the answers I've already been given as above.

Thank you Cherie if you reply, and thank you Tkrik for allowing me to hijack just this once.

tkrik 04-08-2008 09:18 PM

Quote:

Originally Posted by Koala77 (Post 254643)
I'm hijacking your thread for just a minute. Please forgive me.

Hijack away Koala. I never worry about hijacks as they can be really positive hijacks. This thread seems to be opening quite a bit of good discussion and I am all for it.

Cherie and I have had discussions on the hug before and she has lots of knowledge as well as experience with the hug. She has been a great resource for me regarding this issue.

lady_express_44 04-08-2008 10:54 PM

Quote:

Originally Posted by tkrik (Post 254581)
It definitely affects the internal organs. Not fun. I am still on a smoothie diet. LOL.

Numbness, tingling, inflammation, spasms, and extreme sensitivity to touch are some of the things that I can think of that go along with this.


I was thinking about this the other day T, and I really hate eating when I get the numbness with the hug. I think it expands my skin in some small way, and then the sensation is much worse (just like when we move or do virtually anything). I also feel sick to my stomach, but I think that is a bit of mind over matter (because I know it will hurt to eat).

You described the sensations very well, BTW. :( Sometimes is also hard to get my breath . . . like the lungs don't expand enough. I also feel as though I have no muscle what-so-ever in my torso . . . I couldn't hold in my stomach if my life depended on it.

Cherie

MSacorn 04-08-2008 11:03 PM

Quote:

Originally Posted by tkrik (Post 254563)
They will also send the urine sample over for a culture to make sure I don't have an infection. (I don't think I do as I don't have symptoms of that)

Just my two cents here. I've been following the thread and have read lots of great info here.

Tkirk I am sorry you are feeling so crummy, I hope you are on a healing trend and the worst is over (for now).

In November I went to my pcp for a routine physical and my urine test came back as a massive infection. Yet I had absolutely no sx and hadn't noticed any changes in my usual bladder issue, hesitancy, or anything else.

After 5 days of abx I was fine. Better to be safe then sorry. Feel better.

:hug:

lady_express_44 04-08-2008 11:07 PM

Quote:

Originally Posted by weegot5kiz (Post 254593)
yeah cherie that was kind of weird Barb explained it so well, I was trying about 3 weeks ago to explain it to the doc, I didnt know that is the MS HUG now I do , I always just say tightness in the chest and difficult breathing,

thats what made me think of it too, I used the phrase to the neuro draw a line from here to here on front and back of my body,


Is your hug (sometimes or always) accompanied by numbness/skin sensations too? I used to describe the sensations as like having a 6 or 8 inch elastic belt or band, stretched to the max, wrapped around my middle, and released so that it is squeezing my skin (and everything else).

Honestly, this isn't that common, but your neuro should recognize what it is.

Quote:

Originally Posted by weegot5kiz (Post 254593)
If I could ask you something cherie, i mentioned it around 4 am this morning on here and dont remember where:eek: there's a big surprise.

The period inbetween flares, relapse's whatever term you want to use, is there any terminology for the false sense of security between flares, I would like to read any info about it from a pysch aspect.

I will try to explain this, so here goes, its almost like I forgot some of my SX? does that make sense or am i just blocking it out, sort of like a false security like oh good flare up is gone so is MS. this has just been such a weird flare, every time my flares have always been on left side, and this time its all backwards, its all on right side, I pretty much have myself convinced from a mental standpoint I am so off guard this time because I have put the MS far enough back in my mind and dealt with other issues and centered on those instead, but not sure I am that bright:Ponder:

would be interested in reading about this, it has to be a common thread to MS that false sense of oh good its finally gone. sorry to babble :hit-safe:

Flare Sis you hang in there too, first one out of it, gets to drive the little red corvette


I think we have to, as a coping mechanism, Frank. Quite honestly, if I thought I would have to live forever with the "extremes" I've gone through, I wouldn't want to.

I don't know if they have a name for it, but I am very thankful it isn't "all on" all the time. When it's not, and even though I never go back to "normal" any more, I appreciate every day to the fullest.

Cherie

tkrik 04-08-2008 11:21 PM

Cherie - I get the same way. Digesting food hurts and I don't do it well when I am like this. As far as eating, I think you are right about the mind over matter to some degree. But is that from the pain or a physical symptom due to the MS? I'm not sure. Kind of like what came 1st, the chicken or the egg. Either way I know that when I get like this it's smoothie time. (Cucumber yogurt smoothies are really good!) I can't eat anything that is difficult to digest.

Many times I have to lay down and put my arms over my head to get that good deep breath. Or I do yoga stretches. It helps even if only temporary. As for the sucking your stomach in, I am so with you on that one. No ab workouts for me. I gave up on that.

MSacorn - Thank you so much for that information. That is exactly what the neuro and uro said. Because of our mixed up sensations we may not feel an infection.

Kind of funny story about bladder issues. I was at DBF's one day and was horrified as I felt like I had just peed myself. So off I got to the bathroom thinking I was going to have to shower and change and was completely humiliated.. I get in there and to my surprise, I was dry. LOL. Yes, our sensations are mixed up. This happened several times that day. I finally decided I was not going to run to the bathroom anymore until I saw a puddle.:D

lady_express_44 04-08-2008 11:22 PM

Quote:

Originally Posted by Koala77 (Post 254643)
I too thank you Cherie for that great explanation....but....I've been suffering from something that's more like acute short stabs of pain in the intercostral spaces/muscles.


I'm leaning towards the explanation you've gotten as it really does make the most sense, Koala.

The thing with the hug is that it is apparently due to spinal lesions. In my experience, when the hug comes on, there are several other sensations (as tkirk mentioned) that come on at the same time; sensitivity to touch, burning, numbness and it is often very, very intense.

I have had the hug on it's own, when I was in the final healing stages of a spinal lesion attack, that just felt like pressure with difficulty breathing (like heaviness on the chest). However, the only sharp pain that I've had associated to the hug is the way my skin felt. I've had no sharp pain internally.

It may be a spasm of some sort that you are experiencing, which I get BETWEEN my ribs, internally . . . that's not due to MS though, it's from Ulcerative Colitis.

The hug spasms don't feel like other spasm at all (to me). That's what they ARE, apparently, but the only indication that it is a spasm (for me) is little jittery feelings inside; nothing sharp, and nothing like the charlie horse spasms I get from spasticity in my legs.

Maybe others have experienced something similar to what you are saying though, and can relate. I would at least be getting that checked out for another potential cause though, if I were you . . .

Cherie

tkrik 04-08-2008 11:29 PM

Quote:

Originally Posted by lady_express_44 (Post 254710)
The hug spasms don't feel like a spasm at all. That's what they ARE, apparently, but the only indication that it is a spasm (for me) is little jittery feelings inside; nothing sharp, and nothing like the charlie horse spasms I get from spasticity in my legs.

When I was at the neuro's last week confirming that I was having an exacerbation I did ask if this was from spasms or nerve as to me it felt more like nerve. What he said was that it is both but since I had the sensitivity to touch I was experiencing a lot of nerve pain, hence the increase in Neurontin. This actually makes sense as if the nerves are "whacked" then they in turn don't communicate with the muscles or over communicate causing spasms. (This last part was my own logic, not his as I was in too much pain to really care to hear a full on explanation. LOL)

lady_express_44 04-08-2008 11:42 PM

Quote:

Originally Posted by tkrik (Post 254708)
Cherie - I get the same way. Digesting food hurts and I don't do it well when I am like this. As far as eating, I think you are right about the mind over matter to some degree. But is that from the pain or a physical symptom due to the MS? I'm not sure. Kind of like what came 1st, the chicken or the egg. Either way I know that when I get like this it's smoothie time. (Cucumber yogurt smoothies are really good!) I can't eat anything that is difficult to digest.


Part of it may be that often our bowels aren't working properly during this period too. I will go weeks without one BM, and my stomach and back are experiencing that pressure as well. I don't "feel" anything (of course, I'm numb), but my abdomen and back are swollen from not having the muscle/coordination/ability to go.

Quote:

Originally Posted by tkrik (Post 254708)
Many times I have to lay down and put my arms over my head to get that good deep breath. Or I do yoga stretches. It helps even if only temporary. As for the sucking your stomach in, I am so with you on that one. No ab workouts for me. I gave up on that.


Yoga breathing exercises are awesome, and agree putting my arms up (especially when I am laying down) is the best way to get a breath. Breathing exercises are good for helping to distract us from the pain too.

I don't do any other kind of exercises when this happens, or even have much movement when it's really bad. As soon as I start to feel slightly better though, I do as much as I can tolerate, at every opportunity. If only one area is numb, I do exercise the other ones (stretches, foot curls, etc.), but sometimes most of my body is going through it so I don't do anything. It's a long 6 weeks . . .

MSacorn, you are right about not feeling things (and/or feeling things that aren't there; trickles, buzzing, hot patches, cold patches, etc.), and I really can't emphasize enough how important it is to keep our fever in check and infections treated, especially with spinal lesions.:eek::eek::eek: Every spinal lesion attack I've had so far has started from an untreated infection or virus that increased my body temp. It doesn't take much of an increase either . . .

Cherie

Koala77 04-09-2008 12:43 AM

Thank you Cherie!




Twinkletoes 04-09-2008 01:18 AM

Help is on the way!
 
In an effort to help I've called Pest Control. They are coming to get that boa constrictor uncoiled from your torso!!!

I know you're not a large person, but the Hug sounds like a size 22 woman wearing a size 12 girdle.

I haven't experienced it yet, so just going by the posts. Ugh! So sorry for you, Frank, et al.

Be well, my friend. :hug::hug::hug: (very gentle hugs)

tkrik 04-09-2008 01:23 AM

Quote:

Originally Posted by lady_express_44 (Post 254726)
I don't do any other kind of exercises when this happens, or even have much movement when it's really bad. As soon as I start to feel slightly better though, I do as much as I can tolerate, at every opportunity. If only one area is numb, I do exercise the other ones (stretches, foot curls, etc.), but sometimes most of my body is going through it so I don't do anything. It's a long 6 weeks . . .

Movement is rough. I spent 4 days laying down, not comfortably, but laying flat on my back. I went from one couch to the other to my bed to the computer to check for work and "lurk" and/or post on here to back to the couch . . . I was so thrilled when I could sit up for a little bit. Big sigh of relief.

Again, 4 to 6 weeks is a pretty good prediction as that is what I have experienced in the past with this thing. It is a slow healing process.

tkrik 04-09-2008 01:25 AM

Quote:

Originally Posted by Twinkletoes (Post 254782)
In an effort to help I've called Pest Control. They are coming to get that boa constrictor uncoiled from your torso!!!

I know you're not a large person, but the Hug sounds like a size 22 woman wearing a size 12 girdle.

I haven't experienced it yet, so just going by the posts. Ugh! So sorry for you, Frank, et al.

Be well, my friend. :hug::hug::hug: (very gentle hugs)

No Twink. It is a size 22 woman wearing a size 2 girdle.

FinLady 04-09-2008 08:18 AM

TK, Sorry I'm coming into this so late, but wanted to give you some good hugs. :hug:

I've also had the MS hug a couple of times. And for me, it felt like a boa constrictor around my turso. The worst part is it hit suddenly one night, scared me a little. Hubby and I talked about the pain, etc. and decided that it wasn't something we should go to the ER for. (helpful to have around a son of a surgical nurse who grew up reading medical texts, lol).

Found a sitting position that made it felt great, but couldn't fall asleep sitting up. Ugh. That was a rough night for me.

I hope things improve for you regarding this.

lady_express_44 04-09-2008 09:18 AM

I just wanted to mention and/or clarify a some points regarding the hug/spinal lesions, for those who have this to contend with (and want to know the nitty gritty).

Of course “nothing is absolute” with this disease, but my neuro has provided me with some awesome written material about spinal lesion attacks. I have gone through most of what I have read, so I suspect her advice would ring true in most cases of spinal lesion attacks.

I'll try to give my interpretation, based on what I know/have gone through . . .

1. Apparently about 75% of PwMS have spinal lesions, but most people will never have any attacks from them. Just because we have them, doesn’t mean they will be bothersome (same as brain lesions), or will effect us more then once in a lifetime.

2. If we have an attack from them, it can be mild, moderate or severe. I imagine that full body numbness, with paralysis and internal organs affected, would be considered severe; mild would be only one large part of the body (like the hug, but it doesn’t feel “mild” at all!); moderate would include the in-between.

3. Spinal lesion attacks are a distinct neurological event, and the attack “process” is the same (for me) each time; inflammation/escalation (symptoms getting worse) --> stabilization/status quo (symptoms remain the same) -->, repair/recovery (symptoms improve). The recovery process often follows the exact pattern of how the numbness came on, i.e. we improve first in the places where the numbness came on.

NOTE: The symptoms aren’t necessarily just altered sensations (pain, numbness, shocks), bladder/bowel issues, etc., but can include the excessive brainfog, fatigue, spasticity, back aches, headaches, motory problems, etc. too.

4. The process almost always takes 4 – 6 weeks of escalation/status quo, then 4 – 6 weeks of recovery. If the symptoms/damage does not start to recover by the 3rd to 6th month, the damage can be permanent. BUT if we do make some recovery by that time, we may continue to make additional recovery over the next two years.

Sometimes the process will be shortened by the use of steroids, but then it will repeat itself . . . (see below).

5. Steroids are not normally rx’d with sensory/spinal lesion attacks because there is no evidence that they help in the short or long-term (plus there are short and long-term side effects from the use). No clinical trials have ever proven their effectiveness for this type of attack...

(Utilization of steriods is personal choice, of course) but it is my experience that this type of attack will run it's course whether or not steroids are used. Steroids (seem to only) slow down that natural inflammation process, then the attack regains it’s momentum and continues to do what it’s gonna’ do eventually anyway.

Apparently pulse steroids may help longer-term "damage" . . .

6. The (ultimate) damage caused during this kind of attack (dependant on the severity of the attack when it occurs), is:

- 33% of the time (lesions heal, no permanent damage)
- 33% of the time (lesions partially heal, some substantial permanent damage)
- 33% of the time (lesions don't heal adequately, bedridden/wheelchair bound or severely disabled from the get-go).

With spinal lesions, sometimes patches of numbness, or the hug, will suddenly come on in various parts of our bodies, even though we are not officially in a spinal lesion attack (pseudo exacerbation). This numbness can be as a result of an increase in temp, fatigue, stress, infection, sickness, etc. . . . but once the trigger is removed the symptom will settle back down.

However, in the case of pseudo exacerbations caused by infection, this can lead to a real attack if the infection is not treated.

It is usually abundantly obvious if this is a “real” spinal lesion attack by the extent of the altered sensations. Even a “mild” attack is often painful, and includes a substantial part of the body (torso and/or legs and/or both hands/feet, etc.). A numb “patch” would not be considered an attack, but may be a warning sign to be checked for infection . . .

As for the “hug” specifically, this sensation (although it might not be called the same thing) can happen anywhere, not just in the torso area. For instance, I have had “the hug” sensation in my legs and feet too.

Cherie

weegot5kiz 04-09-2008 09:36 AM

MorningTK and everyone else

Cherie mine has been pretty consistent, and after reading this, figure yet another thing out. perhaps the nausea is not from all the pills, so i shall pay better attention when and what i eat, which honestly i have not felt like doing, much of late either

glad you posted this TK, it has helped give me some new insights to this MS. I have a bad habit of brushing off pains and thing going on with my body as no biggie or nothing to worry about, but now that I have a better grasp of this hug and now I know what it feels like as far as being decribed and going through it at same time, maybe next time when the hug hits me right away I wont push it back or ignore it but rather get to doc and maybe we could of started the steroid carp sooner instead of letting alomst 4 weeks go by without doing anything.:Thanx:

tkrik 04-09-2008 12:12 PM

Frank - I am glad that this opened up many discussions. While I didn't plan on that and was curious about the sick feeling, I am glad that others have chimed in with their experiences with the hug. It helps keep things in perspective and get a better understanding of this aspect of MS.

Cherie - great points! Those are my understandings as well.

KarenMarie 04-09-2008 06:46 PM

I wonder if the feeling I get has anything to do with the hug - it feels like all my insides are swelling up and putting unbearable pressure on the inside of my ribs - first noticed it when I was on ACTH - it felt like I was ready to pop and that my brain was swelling too - sort of like too much MSG - then I get a horrendous pain right at the base of my esophagus and feel like I need to burp but can't - have gone so far as to make myself throw up to relieve the pressure - it doesn't but none of my food is digested either - can't move in any direction that relieves it - and it takes a day or two to finally go away but I'm sore afterwards like someone had kicked me in the chest - never connected any of it to MS

tkrik 04-09-2008 06:57 PM

KM - I haven't experienced anything like what you have described other than not digesting food properly. Have you been checked for GERD? Ask your dr about it the next time you go. On the other hand, it could be a result of the hug and your body's reaction to it. Others here may have experienced this. Let's hope someone chimes in with their experience.

the Bird 04-09-2008 07:14 PM

Quote:

Originally Posted by tkrik (Post 254991)
Frank - I am glad that this opened up many discussions. While I didn't plan on that and was curious about the sick feeling, .

Now we know good and well that you wanted all this attention!!! :D

Here is a friendly nice :hug: for you

and a friendly group :grouphug: for all of you!

I hope you ALL feel better!

Koala77 04-09-2008 07:20 PM

That was a nice post Bird!

I was just thinking that this thread is an excellent example of how we all pull together to help one another. If one person doesn't know the answer to a question that's been asked, there's sure to be another who does.

As for support.......well.....all the hugs for those suffering at any given moment has to say a lot.

Thank you everybody, especially Tkrik for starting the thread. :grouphug:

tkrik 04-09-2008 07:21 PM

LOL, Bird. Yeah, leave it to you to just chirp, chirp in here and spill the beans. LOL

It was a nice post Bird and I really appreciate the cyber hugs as a real one may put me through the roof.

weegot5kiz 04-09-2008 08:44 PM

see told ya she came from a good egg Thanks Bird, always want to type robin cause of the picture.

how you doing flair or is it flare or now a days is it phlare Sis :hug:

Good Day Annie how are you doing


KM when i get that feeling, it is usually from the inside, usually inflammation, i get pleurisy(sp?) and some other one I doubt i could ever spell it is inflammation between ribs and lungs (konstrictivitus(sp?))

I can tell the real diff between the two is like a bear hug i guess would be best way to put it a real strong one at times too:Crowded: uncomfortable painful and mine tends to stick around way too long


peace all


All times are GMT -5. The time now is 08:55 AM.

Powered by vBulletin • Copyright ©2000 - 2025, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise (Lite) - vBulletin Mods & Addons Copyright © 2025 DragonByte Technologies Ltd.