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Discussion Starter · #1 ·
i'm desperate and tired of not knowing is this ibs or something else? please read carefully if you are going to respond saying you have these symptoms - just b/c otherwise it will be confusing to me.i'll try to be as descriptive as I can:abdominal cramping - that involves the muscles that hold up the trunk, and for breathing and turning, talking - when I turn and reach for something - I look like I have a serious neuromuscular disorder. when talking, shrugging, etc its as if all my muslces are frozen into a solid hard mass - and i have to move my whole body - people think i'm tense, seriuos and nervous - but I'm fighting to look as "normal" as I can - sometimes when I'm talking and the muscles want to move crazily - looking normal makes me sweat and red in the face. my face is constantly tense due to the constant muscle tension. i am hunched over and my stomach has dips and ridges where the muscles are squeezing inTENSELY. when i pass gas these feelings go away somewhat, but never entirely. it feels as if passing the gas just distracts my gut muscles momentarily. my stomach undulates constantly and when it does I feel hard scraping sensations around my ribs. my shoulders and neck and face always feel like they are sitting on top of a pile of muscles way too high up. i don't talk or laugh or gesture like i used to - b/c I can't. my voice and laughter sound "canned" b/c i can't exhale all the way and let my abdominal muscles drop. I have to wear something tight & low around my waist at all times otherwise my muscles aren't "distracted" and start squeezing inward and out over and over again. even when i'm "emtpy" this is occuring however it does seem to help to pass gas. my symptoms are brought on by wearing clothing that touches my body around the waist or higher, or being naked - I'm guessing not enough sensation to distract, by trying to sit straight up and suck the gut in just a bit, but exercising, by talking, by laughing or just being.my symptoms are relieved by crying, sleeping on my stomach, alcohol and other depressents, muscle relaxers, temporarily by passing gas and wearing low waisted restrictions (but i see these as distractions).my back muscles feel as if they've shortened and I can't bend over or sideways all the way anymore - my abdominal muscles feel as if they've lengthened and I can't fit them in my gut anymore.sometimes my calves get really tense and huge and feel like they will burst - within a few minutes. the swelling is visible and muscle as hard as a nut - I also get this when shoes fit my feet in the wrong way - not tight - but touching in the wrong way.can anyone PLEASE tell me what this is? my good old friend Flux?my "normal" ibs symptoms are mucous and frequent urgent bowel movements that sometimes are diarhhea/sometiems not. at certain times i have intense pressure under my diaphragm. do I need to see a neurologist or will they say i'm nuts? my only clues are dystonia (but usually does not involve the stomach) and stiff peson syndrome (a possibility, but mine doesn't seem severe), is it possible that my abdominal muscles are jsut reacting overly to sensing pressure in my gut?
 

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Doesn't sound like IBS to me.I don't know what it could be, but perhaps a neurologist would be the right place to start??I can't tell if the tension in the muscles is from...how much is physical and how much is your stress level, etc making it worse. That a good cry relieves it may indicate some interaction between the psychological and the physcial, so some sort of biofeedback or other training like that might be helpful. Sounds like it may be one of those, it starts up for physcial reasons, but your response to it (working hard to be normal, etc) may set things up to make it be worse, rather than make it be better???K.
 

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Doesn't sound like IBS to me.I don't know what it could be, but perhaps a neurologist would be the right place to start??I can't tell if the tension in the muscles is from...how much is physical and how much is your stress level, etc making it worse. That a good cry relieves it may indicate some interaction between the psychological and the physcial, so some sort of biofeedback or other training like that might be helpful. Sounds like it may be one of those, it starts up for physcial reasons, but your response to it (working hard to be normal, etc) may set things up to make it be worse, rather than make it be better???K.
 

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You know I have stiffness in facial muscles, I find it hard to smile naturallly, because of some meds I am on. Are you taking meds? Also having gas/bloat is so depresssing that I suspect that this started happening to me before I started taking meds. But because my gas is under control and I am happier, when I do go off the meds, I find it easier to smile. I don't try very hard to smile when I am on meds because it is too much of an effort or I too would be sweating. So in that way you are not alone. I hope the specialist you see in Sept helps you out. If you trake Prozac you will be constantly smiling
 

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You know I have stiffness in facial muscles, I find it hard to smile naturallly, because of some meds I am on. Are you taking meds? Also having gas/bloat is so depresssing that I suspect that this started happening to me before I started taking meds. But because my gas is under control and I am happier, when I do go off the meds, I find it easier to smile. I don't try very hard to smile when I am on meds because it is too much of an effort or I too would be sweating. So in that way you are not alone. I hope the specialist you see in Sept helps you out. If you trake Prozac you will be constantly smiling
 
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Discussion Starter · #8 ·
K - I don't think its much to do with stress - just exacerbates it when its going on. And its hard to say b/c muscle tension definitely brings it on - but this can be part of laughing or just sitting up poised etc. Today I feel much better - 80% better than normal - which is typical after a really bad day - its almost as if my body gets worn out and thats good. But by the end of the day I'll be back to my normal crappiness - I can already feel my stomach muscles highly aware and pushing at my non-tight clothing a bit - and kind of "opposing" themselves. I forgot to mention that this will even go on at night if I sleep on my back - leaving my stomach muscles to push out unopposed - and especially if I wear something around my waist in the wrong area - near belly button - or wear pajama pants, as the feeling of them on my stomach and legs is apparently too much even for my sleeping nerves to take; I will wake up in a severe muscle spasm if I make this mistake. I have to wear A-line (see xmas tree shape!) outfits during the day and nite to avoid this. I fall in line with stiff person in that i have an exaggerated surprise response and i've always had very tight abdominal muscles - which is one of the early indicators. I also cannot be tickled or I get so tense that I almost stop breathing its very scary - my BF thinks this is a joke but its not. But I can run and run and run and not get tight leg muscles. I lean toward dystonia sometimes too. The only non-sequitur part is I don't hear dystonic folks or stiff people say their symptoms are brought on by normal sensations like clothing. This is where the gut doctors will say i'm just hypersensitive in that area b/c my colon is speaking to my gut muscles etc. and for sure I have problems with my colon esp. with moving gas out. And to be honest - sometimes I'm convinced they are right.Flux - I haven't seen anyone about the stiff p syndrome yet - its so rare apparently even some neurologists have not heard of it. Also, I'm a bit scared to be labelled as a malingerer or just go and have them not take me seriously - or be given another disease label that they can't test for and still not know if this is true. I have emailed the UK support group asking for a US doctor who's worked with st. person syndrome patients before.Do you think my symptoms meets the criteria for it? Or for dystonia? thx, S
 
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Discussion Starter · #9 ·
K - I don't think its much to do with stress - just exacerbates it when its going on. And its hard to say b/c muscle tension definitely brings it on - but this can be part of laughing or just sitting up poised etc. Today I feel much better - 80% better than normal - which is typical after a really bad day - its almost as if my body gets worn out and thats good. But by the end of the day I'll be back to my normal crappiness - I can already feel my stomach muscles highly aware and pushing at my non-tight clothing a bit - and kind of "opposing" themselves. I forgot to mention that this will even go on at night if I sleep on my back - leaving my stomach muscles to push out unopposed - and especially if I wear something around my waist in the wrong area - near belly button - or wear pajama pants, as the feeling of them on my stomach and legs is apparently too much even for my sleeping nerves to take; I will wake up in a severe muscle spasm if I make this mistake. I have to wear A-line (see xmas tree shape!) outfits during the day and nite to avoid this. I fall in line with stiff person in that i have an exaggerated surprise response and i've always had very tight abdominal muscles - which is one of the early indicators. I also cannot be tickled or I get so tense that I almost stop breathing its very scary - my BF thinks this is a joke but its not. But I can run and run and run and not get tight leg muscles. I lean toward dystonia sometimes too. The only non-sequitur part is I don't hear dystonic folks or stiff people say their symptoms are brought on by normal sensations like clothing. This is where the gut doctors will say i'm just hypersensitive in that area b/c my colon is speaking to my gut muscles etc. and for sure I have problems with my colon esp. with moving gas out. And to be honest - sometimes I'm convinced they are right.Flux - I haven't seen anyone about the stiff p syndrome yet - its so rare apparently even some neurologists have not heard of it. Also, I'm a bit scared to be labelled as a malingerer or just go and have them not take me seriously - or be given another disease label that they can't test for and still not know if this is true. I have emailed the UK support group asking for a US doctor who's worked with st. person syndrome patients before.Do you think my symptoms meets the criteria for it? Or for dystonia? thx, S
 

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I was just wondering if the "trying to move normally" when you aren't able to might cause feedback in a way that makes it worse.Sort of like with Parkinson's syndrome when they freeze. If they keep trying to move the way they were before they freeze it seems to keep them frozen. Moving in a different way, or getting certain kinds of stimulus (like stepping over a small obstical rather than a regular step or being touched on the top of the foot) can unfreeze them.It sounded a bit like that, which was what I thought something like biofeedback or getting some sort of something like that might help. That way it might be possible to "short circuit" what is going on. Sometimes fighting something makes it worse, where learning what non-fighting method to get it to relax/loosen up/etc. might be helpful. That way you might not have to fight it but work with it sometimes that approach makes a difference.K.
 

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I was just wondering if the "trying to move normally" when you aren't able to might cause feedback in a way that makes it worse.Sort of like with Parkinson's syndrome when they freeze. If they keep trying to move the way they were before they freeze it seems to keep them frozen. Moving in a different way, or getting certain kinds of stimulus (like stepping over a small obstical rather than a regular step or being touched on the top of the foot) can unfreeze them.It sounded a bit like that, which was what I thought something like biofeedback or getting some sort of something like that might help. That way it might be possible to "short circuit" what is going on. Sometimes fighting something makes it worse, where learning what non-fighting method to get it to relax/loosen up/etc. might be helpful. That way you might not have to fight it but work with it sometimes that approach makes a difference.K.
 

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Discussion Starter · #14 ·
kmottus --- i guess i wasn't understanding you at first - but now yes, that does make sense - and it does get so much worse when I try to fight it, true. i had no idea parkinson's was that way. i often find myself scratching my head or yawning (so attractive) when i'm trying to short circuit the muscle spasms - this helps. the tying something at the waist helps too as its a different point from where my muscles usually contract - but generally i have to change these things as over time techniques become less effective proportionately to how much they are used. but i never thought how this was related to biofeedback.this is all very odd - but nice to talk about openly at last! PHEW!i'm in San Francisco but i'll look at that site for finding a doc
 
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Discussion Starter · #15 ·
kmottus --- i guess i wasn't understanding you at first - but now yes, that does make sense - and it does get so much worse when I try to fight it, true. i had no idea parkinson's was that way. i often find myself scratching my head or yawning (so attractive) when i'm trying to short circuit the muscle spasms - this helps. the tying something at the waist helps too as its a different point from where my muscles usually contract - but generally i have to change these things as over time techniques become less effective proportionately to how much they are used. but i never thought how this was related to biofeedback.this is all very odd - but nice to talk about openly at last! PHEW!i'm in San Francisco but i'll look at that site for finding a doc
 

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On Animal Planet (I think coulda been National Geographic channel) they recently had a thing on a dog that was a guide dog for someone with parkinsons.It was a big dog that could stabilize the guy when he was about to fall and was trained to recognize freezing and would step on his foot to get him going again.It is amazing what they can train some dogs to do.K.
 

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On Animal Planet (I think coulda been National Geographic channel) they recently had a thing on a dog that was a guide dog for someone with parkinsons.It was a big dog that could stabilize the guy when he was about to fall and was trained to recognize freezing and would step on his foot to get him going again.It is amazing what they can train some dogs to do.K.
 
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Discussion Starter · #20 ·
that dog story is so sweet K.today i'm back to bad - pretty bad although it feels more like i have extreme internal pressure in my chest - and less like a abdominal muscle issue however i cannot move my muscles in my upper body very well. i stay confused and cannot breathe very well, smile.in my tired mind I forgot to thank everyone for their responses - thanks so much - has really helped to talk about this, I really appreciate your (Kmottus,Flux,Bonneie and Belinda) taking the time to respond
 
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