That horrible all over feeling you just can't explain.....

[[Cr...]]

Anyone else get this, its like a pressure, or tightening severely uneasy feeling all over your body....is usually accompanied by numbness, burning, prickly feeling or tingling in parts of the body and other more common symptoms....I have yet found the words to describe this properly. It's as if gravity is pressing down and in other directions on different parts of you and all your muscles and joints are drying out and you feel severely uncoordinated and stuck. Lasts anywhere from a couple minutes to a couple hours.

[[Co...]]

Yup and u described it well. I have a hard time trying to describe it too. It has been pretty constant for me lately and I won't miss it when it's gone! I thought I was the only one getting that? It's one of the worst things I get and lots of the others sx flare along with it. Sorry u have this too, I know it's torture.

[[Cr...]]

I swear I'm going crazy...this has to let up....its been about a month of this every day now.

[[Co...]]

I know right! It's been pretty rough! I hope u get some relief soon cause its a horrible feeling.

[[Cr...]]

I'm kinda used to it now, meaning it no longer freaks me out, but I'm still afraid it's never going to stop....and it is VERY uncomfortable/debilitating when it happens. I've been getting them on and off every 30 minutes today, seems I am getting them more and more often, which to me is not a good sign.

[[ke...]]

Yuck. And feel your whole body constricting from the inside out.

[[Cr...]]

Yes, constricting...and in a way, it almost feels like you're moving through space, even when you are sitting still, sometimes mixed with rocking and pulsating. I get it real bad in my face, it get prickly and feels like its all locking up....I also get electrical shock sensations all over.

[[be...]]

I think I know what you are talking about. I get this rubber band snapping type of sensation in my body followed by a flood of adrenaline and such discomfort - like I want to expand out of my body. Actually painful at times and feels like I am being squeezed internally. It's madness

[[Cr...]]

That's a pretty good description....the rubber band snap I can relate...mostly in my arms...almost like I slammed them on a table or something too....then it comes with a squeezing pressing feeling, somtimes in, out sideways, up and down along with that dreaded rush and sometimes panic attack....it really is so hard to describe...I think we are doing well at getting the gist of it though.

[[be...]]

Yes, all the above. I had it really bad when I first jumped then it went away. Now 6 months out it is back again and I am trying to ride it out....Do you think it is a cortisol issue?

[[Co...]]

I was pretty bad today and took a beta blocker. Seemed to help with this sx.

[[Cr...]]

I have no idea, I'm getting it a LOT today....and have been having it on and off for the past month....can't figure it out, or seem to get any relief from it...it just keeps getting worse/more frequent.

[[pr...]]

i have this heavy pressurized feeling for 28 months now. it has yet to leave. maybe has subsided just a little. i call it a squeezing full body neuropathy. i have it everywhere. from brain to chest/torso, waist/hips -- legs, really bad around the knee's, ankles and feet.

 

but i am a very bad c/t. my whole body has this awful constricting from the inside out 24/ f-cking 7 and i'm just waiting and waiting for it to go away. i know it has to do with all that my brain is doing. i have squeezing in my brain still.

 

i am glad to see a post about it as i really though i was the only one who has this. i think i may be the only one who has had it this long. my other c/t friend has this around her knee's but not full body like me. i hate it. so uncomfortable. just holding on for dear life all the time.

 

don't worry, no one will have this for as long as myself so please don't be scared by my post.

[[Cr...]]

i have this heavy pressurized feeling for 28 months now. it has yet to leave. maybe has subsided just a little. i call it a squeezing full body neuropathy. i have it everywhere. from brain to chest/torso, waist/hips -- legs, really bad around the knee's, ankles and feet.

 

but i am a very bad c/t. my whole body has this awful constricting from the inside out 24/ f-cking 7 and i'm just waiting and waiting for it to go away. i know it has to do with all that my brain is doing. i have squeezing in my brain still.

 

i am glad to see a post about it as i really though i was the only one who has this. i think i may be the only one who has had it this long. my other c/t friend has this around her knee's but not full body like me. i hate it. so uncomfortable. just holding on for dear life all the time.

 

don't worry, no one will have this for as long as myself so please don't be scared by my post.

Mine is most certainly full body...at times it can feel like a giant is trying to shear me sideways while my insides get squeezed in and out with pulsating and rocking and moving feelings....It's there most of the day, although it comes in really bad waves at times where it is unimaginably uncomfortable, but it does let up....I'm sure yours will too....I know how frustrating it can be....between that, the full body inner shakes and the burning these past couple weeks I have been feeling like my own brain is torturing me and that there is no escape....no amount of anything has made this go away or subside and to be honest I think its getting worse. Crazy crazy symptoms...If I wasn't feeling them, I wouldn't believe they were even possible. This truly sucks.

[[pr...]]

i have this heavy pressurized feeling for 28 months now. it has yet to leave. maybe has subsided just a little. i call it a squeezing full body neuropathy. i have it everywhere. from brain to chest/torso, waist/hips -- legs, really bad around the knee's, ankles and feet.

 

but i am a very bad c/t. my whole body has this awful constricting from the inside out 24/ f-cking 7 and i'm just waiting and waiting for it to go away. i know it has to do with all that my brain is doing. i have squeezing in my brain still.

 

i am glad to see a post about it as i really though i was the only one who has this. i think i may be the only one who has had it this long. my other c/t friend has this around her knee's but not full body like me. i hate it. so uncomfortable. just holding on for dear life all the time.

 

don't worry, no one will have this for as long as myself so please don't be scared by my post.

Mine is most certainly full body...at times it can feel like a giant is trying to shear me sideways while my insides get squeezed in and out with pulsating and rocking and moving feelings....It's there most of the day, although it comes in really bad waves at times where it is unimaginably uncomfortable, but it does let up....I'm sure yours will too....I know how frustrating it can be....between that, the full body inner shakes and the burning these past couple weeks I have been feeling like my own brain is torturing me and that there is no escape....no amount of anything has made this go away or subside and to be honest I think its getting worse. Crazy crazy symptoms...If I wasn't feeling them, I wouldn't believe they were even possible. This truly sucks.

 

 

i just read your signature. so you did a cold turkey as well? is the neurontin helping the nerve pain at all? is the remeron helping you?

 

my worst symptoms are the head/brain stuff. i have on-going head squeezing along with this vibration in the left lower corner. and honestly, if that would just let up i would feel mostly normal. i fear that it won't ever let up. but when the head symptoms subside the full body squeezing neuropathy does ease up a little bit. sometimes it's so strong that it's very difficult to walk around my house because i have it so bad around my knee's. i've been waiting and waiting for the squeezing, pressurized heavy feeling to dissipate. i hope and pray that one day it will.

 

i hope it will for you too. i'm sure it will much sooner. i feel like i am a really bad case on here. especially with the brain symptoms. when i'm laying down most times it feels like there is an elephant stepping on my chest and torse. i also have it around the waist really bad. i started a new post in the protracted section that reads: "chasity belt around my waist and hips" that's what it feels like. one big vice. 

 

i just hope everything is always a healing symptom.

[[...]]

Well, I'm glad I read this post - not for the suffering, of course, I hate that people are suffering like this - but because I haven't come across too many people who are able to relate to many of my sxs and, due to the fact that I was using so erratically, I'm still trying to connect the dots as to whether some of my sxs are indeed w/d related! 

 

I get this rubber band snapping type of sensation in my body followed by a flood of adrenaline and such discomfort - like I want to expand out of my body. Actually painful at times and feels like I am being squeezed internally. It's madness

 

Exactly how I described it!  Like a rubber band snapping internally, or a quick electric clicking sensation.  Gee, I've never seen anyone else post about this, I thought I was the only one!  I typically get this sx in my legs or trunk.  I was in tolerance w/d for lord knows how long, and I had this constantly during that time.  It started to decrease in frequency during my taper and I get it very infrequently now that I'm 4 months out.  I don't know if either of you are on any other meds, but I sometimes notice it comes on when I take a pain killer or Flexeril (muscle relaxant).  I really hope it also begins to ease off for you too.

 

 

Yes, constricting...and in a way, it almost feels like you're moving through space, even when you are sitting still, sometimes mixed with rocking and pulsating. I get it real bad in my face, it get prickly and feels like its all locking up....I also get electrical shock sensations all over.

 

Mine is most certainly full body...at times it can feel like a giant is trying to shear me sideways while my insides get squeezed in and out with pulsating and rocking and moving feelings....It's there most of the day, although it comes in really bad waves at times where it is unimaginably uncomfortable, but it does let up....I'm sure yours will too....I know how frustrating it can be....between that, the full body inner shakes and the burning these past couple weeks I have been feeling like my own brain is torturing me and that there is no escape....no amount of anything has made this go away or subside and to be honest I think its getting worse. Crazy crazy symptoms...If I wasn't feeling them, I wouldn't believe they were even possible. This truly sucks.

 

CP, this rocking and pulsating is bar none my worst sx.  I have it 24/7 and it is totally debilitating and exhausting!  I do feel for you!  I'm wondering if you're able to describe it more in your own words?  And yes, I know how hard these things are to describe, I don't believe the average person will ever experience a minute of it in his lifetime.    My whole body shudders with it, it feels like all my muscles and bones are moving around, and my blood is flowing turbulently through my blood vessels.  Sometimes it has a dull electric current sensation to it, kind of like a grainy/sandy feeling to the blood flow!  Ugh!

 

The face/head sensations are the worst!  Take the rest of my body but just leave my head alone! 

 

Are you able to relate to any of this?  Do you think you're actually moving at all, or it's just a perception of movement?

 

I'd love to hear your input so I can try and solve this piece of the puzzle!

 

 

[[Cr...]]

Pretty, yes, I did an uninformed c/t from tolerance WD, although I was doing REALLY well just a couple months ago...no physical sx...all mental...now it seems the mental is letting up and the physical is back in full force. The only think I've noticed the Neurotonin helping is the internal shaking....the nerve pain as far as I can tell is still at full power...MAYBE blunted a little, but I wouldn't say its noticeable....I've also noticed sometimes my tinnitus gets less, but that could just be a coincidence. I'm glad to have the shaking gone...it was my worst symptom, but aside from that I'd say Gabapentin seems useless. The remeron SEEMS to be knocking me out, although until recently I wasn't having much issue with sleep, so again, not sure how effective it is...but it HAS increased my appetite, again my appetite was fine until this wave, but it got to the point where I wasn't able to eat at all, so I'm glad for that....all in all I'd say the meds are barely helping, although I think they are taking a LITTLE bit of the edge off. Hard to say, I still feel like complete shit and am having multiple attacks a day.

[[pr...]]

Pretty, yes, I did an uninformed c/t from tolerance WD, although I was doing REALLY well just a couple months ago...no physical sx...all mental...now it seems the mental is letting up and the physical is back in full force. The only think I've noticed the Neurotonin helping is the internal shaking....the nerve pain as far as I can tell is still at full power...MAYBE blunted a little, but I wouldn't say its noticeable....I've also noticed sometimes my tinnitus gets less, but that could just be a coincidence. I'm glad to have the shaking gone...it was my worst symptom, but aside from that I'd say Gabapentin seems useless. The remeron SEEMS to be knocking me out, although until recently I wasn't having much issue with sleep, so again, not sure how effective it is...but it HAS increased my appetite, again my appetite was fine until this wave, but it got to the point where I wasn't able to eat at all, so I'm glad for that....all in all I'd say the meds are barely helping, although I think they are taking a LITTLE bit of the edge off. Hard to say, I still feel like complete shit and am having multiple attacks a day.

 

 

are you bed ridden or house bound at all?

 

that's weird that you had only the mental stuff with no physical symptoms at first. i think that's kinda a good sign. but now you have the neurological physical symptoms?

 

i've had that rocking and pulsating symptom this whole time. on another thread that me and abcd are on "floaty boat" or something like that -- i call it 'undulating" or rocky boat but it does also coincide with rocking and a pulsation. it's maddening.

[[Cr...]]

Pretty....hard for me to leave the house....not bedbound...although at times walking is so hard, im so weak and dizzy.

[[Cr...]]

ABCD you pretty much nailed it.....can't describe it any better....but that's it.

[[...]]

ABCD you pretty much nailed it.....can't describe it any better....but that's it.

 

Ugh, CP, I'm so sorry to hear you're also going through this.  It's got to be one of the worst sxs on the planet. 

Do you feel your body actually moving, or is it only the perception of movement?  For instance, if I lay my head on the palm of my hand, I can feel everything moving and throbbing ... muscles, arteries, Gd knows what's moving!

 

I haven't found any other rocky boat person who actually feels the movement on the outside too.

 

Pretty, maddening is an understatement, isn't it?  Yours seems to come and go though, I'm sorry to hear it's not 100% gone for you yet, hoping it's just a matter of time before it leaves you completely!

 

 

[[Cr...]]

I BELIEVE it is just a sensation....but it's really hard to tell if what I am feeling is real or not.

[[pr...]]

 

Pretty, maddening is an understatement, isn't it?  Yours seems to come and go though, I'm sorry to hear it's not 100% gone for you yet, hoping it's just a matter of time before it leaves you completely!

 

no it has never gone away for 32 months since the c/t. although i count my time as 28 months since the last rescue dose. i've had it this whole time. on that other thread, i just said that it had subsided a lot. and it has. i don't feel it much when i am up and around or sitting at the computer -- but when i'm laying down, i still feel it. i can also feel my brain literally moving forward and back all the time. it is maddening. when i wake up and i'm still  moving, undulating, floaty and rocky boat with that pulsing sensation, i get so shocked. you would think i would just sleep it off one night.

 

[[Cr...]]

Its really strange the things we can feel...or think we can feel....I'm having a horrible night....all skewed and off balance with squeezing and light vertigo with mild burning, shocks and a stabbing pain in my chest that luckily I have narrowed down to my back actually when I move my arm....was beginning to get worried lol....My muscles are just dead, they lock up and hurt and tense and weaken whenever they want to....its crazy.

[[...]]

I BELIEVE it is just a sensation....but it's really hard to tell if what I am feeling is real or not.

 

I hear you, CP.  When mine first started, it seemed like just an inner sensation, as if I could feel the blood gushing up and around through all my blood vessels.  But over time as it became stronger, I realized there was some definite movement going on and I could hear the slight noise of my pillow "throbbing", then I became aware of having a slight visible tremor too!

 

And I know exactly what you mean about feeling off balance and "skewed" and "dead" muscles.  My upper back/neck muscles feel exactly like that, as if they don't have the strength to carry my head, as tight as wire cables, and bending me out of shape on the inside.  Very, very tough!

 

I really, really hope this sx burns itself out for you quickly.  It sucks!  Just a thought, are you considering weaning off the other meds just in case they're adding to the mess?  Particularly as you say you don't feel they're really helping much.

 

Ugh, Pretty, sorry it's still there!  I don't feel it as much when I'm standing/walking, thank Gd!  But then, because of the muscle issues, it feels like I'm holding up two huge watermelons and I have to sit or lie down to catch a break ... at which time I have to deal with the undulating crap.