Re: Band feeling around ribs

[Guest guest]

One of athe biggest areas that sarc likes to attack is our muscles and ligaments. For many, this is a choice that docs like to biopsy.

When the sarc is in our lungs, it's generally outside the lungs also. The muscles and ligaments that surround our ribcage harden, and when we end up with a cough-- it's like having an elephant on your chest-- and you're trying to push him off.

I know whenever I get into a flare of my pulmonary symptoms, I have a rib that dislocates and pulls up onto the one above it. I have learned to act as though I'm letting the air come into my lungs much like envisioning a ballon being blown up. By doing this visualization-- I'm able to allow the muscles to expand and stop the spasm that wants to strangle my lungs.

It has taken a long time to learn to do this-- but it truly does help. Our natural reaction is to suck in-- and hold the muscles tighter-- unstead of allowing them to relax and expand.

Give it a try, and see if this helps,

Tracie

NS Co-owner/moderatorSee what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

Tracie, When I get the banding pain I often get a Distended Abdomen as well. The band is pulling me tight while my stomach is going the other direction. I'm also very sensitive to temperature at those times, often feeling cold when everyone else is hot. No one (doctors) have an answer, I'm a case study for my hospital. Your symptoms seem very different than mine, showing the uniqueness of Sarc. best regards, Ricktiodaat@... wrote: One of athe biggest areas that sarc likes to attack is our muscles and ligaments. For many, this is a choice that docs like to biopsy. When the sarc is in our lungs, it's generally outside the lungs also. The muscles and ligaments that surround our ribcage harden, and when we end up with a cough-- it's like having an elephant on your chest-- and you're trying to push him off. I know whenever I get into a flare of my pulmonary symptoms, I have a rib that dislocates and pulls up onto the one above it. I have learned to act as though I'm letting the air come into my lungs much like envisioning a ballon being blown up. By doing this visualization-- I'm able to allow the muscles to expand and stop the spasm that wants to strangle my lungs. It has taken a long time to learn to do this-- but it truly does help. Our natural

reaction is to suck in-- and hold the muscles tighter-- unstead of allowing them to relax and expand. Give it a try, and see if this helps, Tracie NS Co-owner/moderator See what's new at AOL.com and Make AOL Your Homepage. __________________________________________________

[Guest guest]

Rick, mine feels just like you describe. My stomach sticks out so much

it looks like I have instantly gained 10 pounds! And it's hard to breathe.

I am usually very good at relaxation. Many years of yoga but I can't

control any of this. -

> One of athe biggest areas that sarc likes to attack is

our muscles and ligaments. For many, this is a choice that docs like

to biopsy.

> When the sarc is in our lungs, it's generally outside the lungs

also. The muscles and ligaments that surround our ribcage harden, and

when we end up with a cough-- it's like having an elephant on your

chest-- and you're trying to push him off.

> I know whenever I get into a flare of my pulmonary symptoms, I

have a rib that dislocates and pulls up onto the one above it. I have

learned to act as though I'm letting the air come into my lungs much

like envisioning a ballon being blown up. By doing this

visualization-- I'm able to allow the muscles to expand and stop the

spasm that wants to strangle my lungs.

> It has taken a long time to learn to do this-- but it truly does

help. Our natural reaction is to suck in-- and hold the muscles

tighter-- unstead of allowing them to relax and expand.

>

> Give it a try, and see if this helps,

> Tracie

> NS Co-owner/moderator

>

>

>

>

> ---------------------------------

> See what's new at AOL.com and Make AOL Your Homepage.

>

>

>

>

>

> __________________________________________________

>

[Guest guest]

, The only thing that helps me is eating small meals and getting plenty of sleep. When I was released from the hospital several months ago I lost 30lbs but my waistline remained the same because of my stomach. No matter how hard I tried I could not pull my stomach in. Neurontin has helped me the most so far, but they just switched me to Lyrica to see if that will reduce the banding. regards, Rickwendy_cidp wrote: Rick, mine feels just like you describe. My stomach

sticks out so muchit looks like I have instantly gained 10 pounds! And it's hard to breathe.I am usually very good at relaxation. Many years of yoga but I can'tcontrol any of this. - > One of athe biggest areas that sarc likes to attack isour muscles and ligaments. For many, this is a choice

that docs liketo biopsy. > When the sarc is in our lungs, it's generally outside the lungsalso. The muscles and ligaments that surround our ribcage harden, andwhen we end up with a cough-- it's like having an elephant on yourchest-- and you're trying to push him off. > I know whenever I get into a flare of my pulmonary symptoms, Ihave a rib that dislocates and pulls up onto the one above it. I havelearned to act as though I'm letting the air come into my lungs muchlike envisioning a ballon being blown up. By doing thisvisualization-- I'm able to allow the muscles to expand and stop thespasm that wants to strangle my lungs. > It has taken a long time to learn to do this-- but it truly doeshelp. Our natural reaction is to suck in-- and hold the musclestighter-- unstead of allowing them to relax and expand. > > Give it a try, and see if this helps,> Tracie> NS

Co-owner/moderator> > > > > ---------------------------------> See what's new at AOL.com and Make AOL Your Homepage.> > > > > > __________________________________________________>

[Guest guest]

Ya know Rick.. I'm on a pretty large amount of neurotin too.. I could be that that's helping rather than the anti-inflammatory.. Just don't know.. but I do know its better.. whichever it is.. I was having horrid muscle spasms in my rib cage as well and of course I had one today.. but its been awhile.. Thanks,

Re: Band feeling around ribs

,

The only thing that helps me is eating small meals and getting plenty of sleep. When I was released from the hospital several months ago I lost 30lbs but my waistline remained the same because of my stomach. No matter how hard I tried I could not pull my stomach in. Neurontin has helped me the most so far, but they just switched me to Lyrica to see if that will reduce the banding.

regards,

Rickwendy_cidp <wendy_cidp (AT) yahoo (DOT) ca> wrote:

Rick, mine feels just like you describe. My stomach sticks out so muchit looks like I have instantly gained 10 pounds! And it's hard to breathe.I am usually very good at relaxation. Many years of yoga but I can'tcontrol any of this. - > One of athe biggest areas that sarc likes to attack isour muscles and ligaments. For many, this is a choice that docs liketo biopsy. > When the sarc is in our lungs, it's generally outside the lungsalso. The muscles and ligaments that surround our ribcage harden, andwhen we end up with a cough-- it's like having an elephant on yourchest-- and you're trying to push him off. > I know whenever I get into a flare of my pulmonary symptoms, Ihave a rib that dislocates and pulls up onto the one above it. I havelearned to act as though I'm letting the air come into my lungs muchlike envisioning a ballon being blown up. By doing thisvisualization-- I'm able to allow the muscles to expand and stop thespasm that wants to strangle my lungs. > It has taken a long time to learn to do this-- but it truly doeshelp. Our natural reaction is to suck in-- and hold the musclestighter-- unstead of allowing them to relax and expand. > > Give it a try, and see if this helps,> Tracie> NS Co-owner/moderator> > > > > ---------------------------------> See what's new at AOL.com and Make AOL Your Homepage.> > > > > > __________________________________________________>

[Guest guest]

Rick, I was on Neurontin for years. Was so grateful when I was able to

get off it. Made me feel quite out-of-it. I'm going to try to put up

with this for a while longer. Don't want more pills just now, but

thanks for the info. Let me know how the Lyrica works.

-

> > One of athe biggest areas that sarc likes to attack is

> our muscles and ligaments. For many, this is a choice that docs like

> to biopsy.

> > When the sarc is in our lungs, it's generally outside the lungs

> also. The muscles and ligaments that surround our ribcage harden, and

> when we end up with a cough-- it's like having an elephant on your

> chest-- and you're trying to push him off.

> > I know whenever I get into a flare of my pulmonary symptoms, I

> have a rib that dislocates and pulls up onto the one above it. I have

> learned to act as though I'm letting the air come into my lungs much

> like envisioning a ballon being blown up. By doing this

> visualization-- I'm able to allow the muscles to expand and stop the

> spasm that wants to strangle my lungs.

> > It has taken a long time to learn to do this-- but it truly does

> help. Our natural reaction is to suck in-- and hold the muscles

> tighter-- unstead of allowing them to relax and expand.

> >

> > Give it a try, and see if this helps,

> > Tracie

> > NS Co-owner/moderator

> >

> >

> >

> >

> > ---------------------------------

> > See what's new at AOL.com and Make AOL Your Homepage.

> >

> >

> >

> >

> >

> > __________________________________________________

> >

[Guest guest]

Hi Rick, I had mentioned that I got that band too and the feeling of the "elephant on my chest" as Tracie mentioned. But my abdomen doesn the same thing. As soon as I start having breathing as well, I have the same problem. I have to undo my pants because it is so uncomfortable!!! Debbie Co ModeratorRick Jack wrote: Tracie, When I get the banding pain I often get a Distended Abdomen as well. The band is pulling me tight while my stomach is going the other direction. I'm also very sensitive to temperature at those times, often feeling cold when everyone else is hot. No one (doctors) have an answer, I'm a case study for my hospital. Your symptoms seem very different than mine, showing the uniqueness of Sarc. best regards, Ricktiodaat@... wrote: One of athe biggest areas that sarc likes to attack is our muscles and ligaments. For many, this is a choice that docs like to biopsy. When the sarc is in our lungs, it's generally outside the lungs

also. The muscles and ligaments that surround our ribcage harden, and when we end up with a cough-- it's like having an elephant on your chest-- and you're trying to push him off. I know whenever I get into a flare of my pulmonary symptoms, I have a rib that dislocates and pulls up onto the one above it. I have learned to act as though I'm letting the air come into my lungs much like envisioning a ballon being blown up. By doing this visualization-- I'm able to allow the muscles to expand and stop the spasm that wants to strangle my lungs. It has taken a long time to learn to do this-- but it truly does help. Our natural reaction is to suck in-- and hold the muscles tighter-- unstead of allowing them to relax and expand. Give it a try, and see if this helps, Tracie NS Co-owner/moderator See what's new at AOL.com and Make AOL Your Homepage. __________________________________________________

[Guest guest]

Hi Rick, I had mentioned that I got that band too and the feeling of the "elephant on my chest" as Tracie mentioned. But my abdomen doesn the same thing. As soon as I start having breathing as well, I have the same problem. I have to undo my pants because it is so uncomfortable!!! Debbie Co ModeratorRick Jack wrote: Tracie, When I get the banding pain I often get a Distended Abdomen as well. The band is pulling me tight while my stomach is going the other direction. I'm also very sensitive to temperature at those times, often feeling cold when everyone else is hot. No one (doctors) have an answer, I'm a case study for my hospital. Your symptoms seem very different than mine, showing the uniqueness of Sarc. best regards, Ricktiodaat@... wrote: One of athe biggest areas that sarc likes to attack is our muscles and ligaments. For many, this is a choice that docs like to biopsy. When the sarc is in our lungs, it's generally outside the lungs

also. The muscles and ligaments that surround our ribcage harden, and when we end up with a cough-- it's like having an elephant on your chest-- and you're trying to push him off. I know whenever I get into a flare of my pulmonary symptoms, I have a rib that dislocates and pulls up onto the one above it. I have learned to act as though I'm letting the air come into my lungs much like envisioning a ballon being blown up. By doing this visualization-- I'm able to allow the muscles to expand and stop the spasm that wants to strangle my lungs. It has taken a long time to learn to do this-- but it truly does help. Our natural reaction is to suck in-- and hold the muscles tighter-- unstead of allowing them to relax and expand. Give it a try, and see if this helps, Tracie NS Co-owner/moderator See what's new at AOL.com and Make AOL Your Homepage. __________________________________________________

[Guest guest]

Hi Rick,

I was on

Neurontin for about 3 years, then I was doing better and went off that lasted

about 6 mos. Then my doctor put me on Lyrica, and it is working great with no

side effects, the neurontin seemed like it gave me a heavy feeling.  Marla

 

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Rick Jack

Sent: Saturday, October 27, 2007

8:52 AM

To: Neurosarcoidosis

Subject: Re:

Band feeling around ribs

,

The only thing that helps me is eating small meals and getting

plenty of sleep. When I was released from the hospital several months ago

I lost 30lbs but my waistline remained the same because of my stomach. No

matter how hard I tried I could not pull my stomach in. Neurontin has helped me

the most so far, but they just switched me to Lyrica to see if that will reduce

the banding.

regards,

Rick

wendy_cidp

<wendy_cidp (AT) yahoo (DOT) ca> wrote:

Rick, mine feels just

like you describe. My stomach sticks out so much

it looks like I have instantly gained 10 pounds! And it's hard to breathe.

I am usually very good at relaxation. Many years of yoga but I can't

control any of this. -

> One of athe biggest areas that sarc likes to attack is

our muscles and ligaments. For many, this is a choice that docs like

to biopsy.

> When the sarc is in our lungs, it's generally outside the lungs

also. The muscles and ligaments that surround our ribcage harden, and

when we end up with a cough-- it's like having an elephant on your

chest-- and you're trying to push him off.

> I know whenever I get into a flare of my pulmonary symptoms, I

have a rib that dislocates and pulls up onto the one above it. I have

learned to act as though I'm letting the air come into my lungs much

like envisioning a ballon being blown up. By doing this

visualization-- I'm able to allow the muscles to expand and stop the

spasm that wants to strangle my lungs.

> It has taken a long time to learn to do this-- but it truly does

help. Our natural reaction is to suck in-- and hold the muscles

tighter-- unstead of allowing them to relax and expand.

>

> Give it a try, and see if this helps,

> Tracie

> NS Co-owner/moderator

>

>

>

>

> ---------------------------------

> See what's new at AOL.com and Make AOL Your Homepage.

>

>

>

>

>

> __________________________________________________

>

[Guest guest]

Hi Rick,

I was on

Neurontin for about 3 years, then I was doing better and went off that lasted

about 6 mos. Then my doctor put me on Lyrica, and it is working great with no

side effects, the neurontin seemed like it gave me a heavy feeling.  Marla

 

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Rick Jack

Sent: Saturday, October 27, 2007

8:52 AM

To: Neurosarcoidosis

Subject: Re:

Band feeling around ribs

,

The only thing that helps me is eating small meals and getting

plenty of sleep. When I was released from the hospital several months ago

I lost 30lbs but my waistline remained the same because of my stomach. No

matter how hard I tried I could not pull my stomach in. Neurontin has helped me

the most so far, but they just switched me to Lyrica to see if that will reduce

the banding.

regards,

Rick

wendy_cidp

<wendy_cidp (AT) yahoo (DOT) ca> wrote:

Rick, mine feels just

like you describe. My stomach sticks out so much

it looks like I have instantly gained 10 pounds! And it's hard to breathe.

I am usually very good at relaxation. Many years of yoga but I can't

control any of this. -

> One of athe biggest areas that sarc likes to attack is

our muscles and ligaments. For many, this is a choice that docs like

to biopsy.

> When the sarc is in our lungs, it's generally outside the lungs

also. The muscles and ligaments that surround our ribcage harden, and

when we end up with a cough-- it's like having an elephant on your

chest-- and you're trying to push him off.

> I know whenever I get into a flare of my pulmonary symptoms, I

have a rib that dislocates and pulls up onto the one above it. I have

learned to act as though I'm letting the air come into my lungs much

like envisioning a ballon being blown up. By doing this

visualization-- I'm able to allow the muscles to expand and stop the

spasm that wants to strangle my lungs.

> It has taken a long time to learn to do this-- but it truly does

help. Our natural reaction is to suck in-- and hold the muscles

tighter-- unstead of allowing them to relax and expand.

>

> Give it a try, and see if this helps,

> Tracie

> NS Co-owner/moderator

>

>

>

>

> ---------------------------------

> See what's new at AOL.com and Make AOL Your Homepage.

>

>

>

>

>

> __________________________________________________

>

[Guest guest]

I'm wondering if there are different mechanisms going on here. I've not had the band feeling around my chest or abdomen, but I used to get it around my thighs & I'm been having it on my feet for a couple of years. It's getting worse in my feet. To me it feels like a blood pressure cuff being pumped up too high & left on. But my feet (and my thighs in the past) look perfectly normal--no swelling or discoloration. I've assumed it's related to the neuropathy in my feet & possibly a nerve root problem in my thighs, because of my disk problems. Does anyone else have something similar to my weird symptoms?

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

"How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these."

~ Washington Carver

To: Neurosarcoidosis From: rozebudz36@...Date: Sun, 28 Oct 2007 06:38:40 -0700Subject: Re: Band feeling around ribs

Hi Rick, I had mentioned that I got that band too and the feeling of the "elephant on my chest" as Tracie mentioned. But my abdomen doesn the same thing. As soon as I start having breathing as well, I have the same problem. I have to undo my pants because it is so uncomfortable!!! Debbie Co ModeratorRick Jack <jack11973 (AT) yahoo (DOT) com> wrote:

Tracie,

When I get the banding pain I often get a Distended Abdomen as well. The band is pulling me tight while my stomach is going the other direction. I'm also very sensitive to temperature at those times, often feeling cold when everyone else is hot. No one (doctors) have an answer, I'm a case study for my hospital. Your symptoms seem very different than mine, showing the uniqueness of Sarc.

best regards,

Ricktiodaat (AT) aol (DOT) com wrote:

One of athe biggest areas that sarc likes to attack is our muscles and ligaments. For many, this is a choice that docs like to biopsy.

When the sarc is in our lungs, it's generally outside the lungs also. The muscles and ligaments that surround our ribcage harden, and when we end up with a cough-- it's like having an elephant on your chest-- and you're trying to push him off.

I know whenever I get into a flare of my pulmonary symptoms, I have a rib that dislocates and pulls up onto the one above it. I have learned to act as though I'm letting the air come into my lungs much like envisioning a ballon being blown up. By doing this visualization-- I'm able to allow the muscles to expand and stop the spasm that wants to strangle my lungs.

It has taken a long time to learn to do this-- but it truly does help. Our natural reaction is to suck in-- and hold the muscles tighter-- unstead of allowing them to relax and expand.

Give it a try, and see if this helps,

Tracie

NS Co-owner/moderator

See what's new at AOL.com and Make AOL Your Homepage.

__________________________________________________

[Guest guest]

I'm wondering if there are different mechanisms going on here. I've not had the band feeling around my chest or abdomen, but I used to get it around my thighs & I'm been having it on my feet for a couple of years. It's getting worse in my feet. To me it feels like a blood pressure cuff being pumped up too high & left on. But my feet (and my thighs in the past) look perfectly normal--no swelling or discoloration. I've assumed it's related to the neuropathy in my feet & possibly a nerve root problem in my thighs, because of my disk problems. Does anyone else have something similar to my weird symptoms?

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

"How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these."

~ Washington Carver

To: Neurosarcoidosis From: rozebudz36@...Date: Sun, 28 Oct 2007 06:38:40 -0700Subject: Re: Band feeling around ribs

Hi Rick, I had mentioned that I got that band too and the feeling of the "elephant on my chest" as Tracie mentioned. But my abdomen doesn the same thing. As soon as I start having breathing as well, I have the same problem. I have to undo my pants because it is so uncomfortable!!! Debbie Co ModeratorRick Jack <jack11973 (AT) yahoo (DOT) com> wrote:

Tracie,

When I get the banding pain I often get a Distended Abdomen as well. The band is pulling me tight while my stomach is going the other direction. I'm also very sensitive to temperature at those times, often feeling cold when everyone else is hot. No one (doctors) have an answer, I'm a case study for my hospital. Your symptoms seem very different than mine, showing the uniqueness of Sarc.

best regards,

Ricktiodaat (AT) aol (DOT) com wrote:

One of athe biggest areas that sarc likes to attack is our muscles and ligaments. For many, this is a choice that docs like to biopsy.

When the sarc is in our lungs, it's generally outside the lungs also. The muscles and ligaments that surround our ribcage harden, and when we end up with a cough-- it's like having an elephant on your chest-- and you're trying to push him off.

I know whenever I get into a flare of my pulmonary symptoms, I have a rib that dislocates and pulls up onto the one above it. I have learned to act as though I'm letting the air come into my lungs much like envisioning a ballon being blown up. By doing this visualization-- I'm able to allow the muscles to expand and stop the spasm that wants to strangle my lungs.

It has taken a long time to learn to do this-- but it truly does help. Our natural reaction is to suck in-- and hold the muscles tighter-- unstead of allowing them to relax and expand.

Give it a try, and see if this helps,

Tracie

NS Co-owner/moderator

See what's new at AOL.com and Make AOL Your Homepage.

__________________________________________________

[Guest guest]

Rose, when I was working I'd come home crying every night with my feet and legs.. I have restless leg syndrome and they would just hurt badly.. Of course 12 hours of being on your feet is enough to make your legs ache and hurt anyway..

Re: Band feeling around ribs

Hi Rick, I had mentioned that I got that band too and the feeling of the "elephant on my chest" as Tracie mentioned. But my abdomen doesn the same thing. As soon as I start having breathing as well, I have the same problem. I have to undo my pants because it is so uncomfortable!!! Debbie Co ModeratorRick Jack <jack11973 (AT) yahoo (DOT) com> wrote:

Tracie,

When I get the banding pain I often get a Distended Abdomen as well. The band is pulling me tight while my stomach is going the other direction. I'm also very sensitive to temperature at those times, often feeling cold when everyone else is hot. No one (doctors) have an answer, I'm a case study for my hospital. Your symptoms seem very different than mine, showing the uniqueness of Sarc.

best regards,

Ricktiodaat (AT) aol (DOT) com wrote:

One of athe biggest areas that sarc likes to attack is our muscles and ligaments. For many, this is a choice that docs like to biopsy.

When the sarc is in our lungs, it's generally outside the lungs also. The muscles and ligaments that surround our ribcage harden, and when we end up with a cough-- it's like having an elephant on your chest-- and you're trying to push him off.

I know whenever I get into a flare of my pulmonary symptoms, I have a rib that dislocates and pulls up onto the one above it. I have learned to act as though I'm letting the air come into my lungs much like envisioning a ballon being blown up. By doing this visualization-- I'm able to allow the muscles to expand and stop the spasm that wants to strangle my lungs.

It has taken a long time to learn to do this-- but it truly does help. Our natural reaction is to suck in-- and hold the muscles tighter-- unstead of allowing them to relax and expand.

Give it a try, and see if this helps,

Tracie

NS Co-owner/moderator

See what's new at AOL.com and Make AOL Your Homepage.

__________________________________________________

[Guest guest]

Rose, when I was working I'd come home crying every night with my feet and legs.. I have restless leg syndrome and they would just hurt badly.. Of course 12 hours of being on your feet is enough to make your legs ache and hurt anyway..

Re: Band feeling around ribs

Hi Rick, I had mentioned that I got that band too and the feeling of the "elephant on my chest" as Tracie mentioned. But my abdomen doesn the same thing. As soon as I start having breathing as well, I have the same problem. I have to undo my pants because it is so uncomfortable!!! Debbie Co ModeratorRick Jack <jack11973 (AT) yahoo (DOT) com> wrote:

Tracie,

When I get the banding pain I often get a Distended Abdomen as well. The band is pulling me tight while my stomach is going the other direction. I'm also very sensitive to temperature at those times, often feeling cold when everyone else is hot. No one (doctors) have an answer, I'm a case study for my hospital. Your symptoms seem very different than mine, showing the uniqueness of Sarc.

best regards,

Ricktiodaat (AT) aol (DOT) com wrote:

One of athe biggest areas that sarc likes to attack is our muscles and ligaments. For many, this is a choice that docs like to biopsy.

When the sarc is in our lungs, it's generally outside the lungs also. The muscles and ligaments that surround our ribcage harden, and when we end up with a cough-- it's like having an elephant on your chest-- and you're trying to push him off.

I know whenever I get into a flare of my pulmonary symptoms, I have a rib that dislocates and pulls up onto the one above it. I have learned to act as though I'm letting the air come into my lungs much like envisioning a ballon being blown up. By doing this visualization-- I'm able to allow the muscles to expand and stop the spasm that wants to strangle my lungs.

It has taken a long time to learn to do this-- but it truly does help. Our natural reaction is to suck in-- and hold the muscles tighter-- unstead of allowing them to relax and expand.

Give it a try, and see if this helps,

Tracie

NS Co-owner/moderator

See what's new at AOL.com and Make AOL Your Homepage.

__________________________________________________

[Guest guest]

I've been meaning to join in on this discussion for awhile but I have been in the midst of a BAD 'banding' flare myself. To me it feels like someone is tightening a vise around my chest and the worst of it is on my left side. Months ago I had the nuclear series of heart tests to rule that out and I am fine in that area. I have to be careful of lifting ANYthing or doing anything with repetitive motion or I'll flare up. Usually I end up on some narcotics in addition to my usual pain regime. I believe the colder weather and lifting some pots(10-12) of plants (to go inside because of possible frost) a month ago brought this last flare

on. From what I've just gone through...next time I'll let the buggers freeze. Or throw old sheets or towels on them and hope for the best. My hands swelling and pain also starts with the colder weather. I have to keep the place pretty warm to stave off a flare-up. When I go through these d*** awful flareups it makes me feel like crawling up in a ball and giving up. The pain is mind-numbing/piercing and then I go on the narcotics and numb out in a different way. The pain is like having pleurisy but it doen't accompany coughing or lung pain for me. Although if I get bronchitis or the like I usually end up with a 'flare', too, because of the coughing/repetitive movement. It all really sucks, doesn't it?... But there is still alot I can do so it could be worse. I leave the house maybe once a month, for a short time, and it often takes three or four days to recover. Well, this is way long enough for now and

I'm gonna go lay down. I've had to skip alot of posts cuz of being so sick. I can't keep up. see ya soon hugs S. Debbie wrote: Hi Rick, I had mentioned that I got that band too and the feeling of the "elephant on my chest" as Tracie mentioned. But my abdomen doesn

the same thing. As soon as I start having breathing as well, I have the same problem. I have to undo my pants because it is so uncomfortable!!! Debbie Co ModeratorRick Jack <jack11973 (AT) yahoo (DOT) com> wrote: Tracie, When I get the banding pain I often get a Distended Abdomen as well. The band is pulling me tight while my stomach is going the other direction. I'm also very sensitive to temperature at those times, often feeling cold when everyone else is hot. No one (doctors) have an answer, I'm a case study for my hospital. Your symptoms seem very different than mine, showing the uniqueness of Sarc. best regards, Ricktiodaat (AT) aol (DOT) com wrote: One of athe biggest areas that sarc likes to attack is our muscles and ligaments. For many, this is a choice that docs like to biopsy. When the sarc is in our lungs, it's generally outside the lungs also. The muscles and ligaments that surround our ribcage harden, and when we end up with a cough-- it's like having an elephant on your chest-- and you're trying to push him off. I know whenever I get into a flare of my pulmonary symptoms, I have a rib that dislocates and pulls up onto the one above it. I have learned to act as though I'm letting the air come into my lungs much like envisioning a ballon being blown up. By doing this visualization-- I'm able to allow the muscles to expand and stop the spasm that wants to strangle my lungs. It has taken a long time to learn to do

this-- but it truly does help. Our natural reaction is to suck in-- and hold the muscles tighter-- unstead of allowing them to relax and expand. Give it a try, and see if this helps, Tracie NS Co-owner/moderator See what's new at AOL.com and Make AOL Your Homepage. __________________________________________________

[Guest guest]

I've been meaning to join in on this discussion for awhile but I have been in the midst of a BAD 'banding' flare myself. To me it feels like someone is tightening a vise around my chest and the worst of it is on my left side. Months ago I had the nuclear series of heart tests to rule that out and I am fine in that area. I have to be careful of lifting ANYthing or doing anything with repetitive motion or I'll flare up. Usually I end up on some narcotics in addition to my usual pain regime. I believe the colder weather and lifting some pots(10-12) of plants (to go inside because of possible frost) a month ago brought this last flare

on. From what I've just gone through...next time I'll let the buggers freeze. Or throw old sheets or towels on them and hope for the best. My hands swelling and pain also starts with the colder weather. I have to keep the place pretty warm to stave off a flare-up. When I go through these d*** awful flareups it makes me feel like crawling up in a ball and giving up. The pain is mind-numbing/piercing and then I go on the narcotics and numb out in a different way. The pain is like having pleurisy but it doen't accompany coughing or lung pain for me. Although if I get bronchitis or the like I usually end up with a 'flare', too, because of the coughing/repetitive movement. It all really sucks, doesn't it?... But there is still alot I can do so it could be worse. I leave the house maybe once a month, for a short time, and it often takes three or four days to recover. Well, this is way long enough for now and

I'm gonna go lay down. I've had to skip alot of posts cuz of being so sick. I can't keep up. see ya soon hugs S. Debbie wrote: Hi Rick, I had mentioned that I got that band too and the feeling of the "elephant on my chest" as Tracie mentioned. But my abdomen doesn

the same thing. As soon as I start having breathing as well, I have the same problem. I have to undo my pants because it is so uncomfortable!!! Debbie Co ModeratorRick Jack <jack11973 (AT) yahoo (DOT) com> wrote: Tracie, When I get the banding pain I often get a Distended Abdomen as well. The band is pulling me tight while my stomach is going the other direction. I'm also very sensitive to temperature at those times, often feeling cold when everyone else is hot. No one (doctors) have an answer, I'm a case study for my hospital. Your symptoms seem very different than mine, showing the uniqueness of Sarc. best regards, Ricktiodaat (AT) aol (DOT) com wrote: One of athe biggest areas that sarc likes to attack is our muscles and ligaments. For many, this is a choice that docs like to biopsy. When the sarc is in our lungs, it's generally outside the lungs also. The muscles and ligaments that surround our ribcage harden, and when we end up with a cough-- it's like having an elephant on your chest-- and you're trying to push him off. I know whenever I get into a flare of my pulmonary symptoms, I have a rib that dislocates and pulls up onto the one above it. I have learned to act as though I'm letting the air come into my lungs much like envisioning a ballon being blown up. By doing this visualization-- I'm able to allow the muscles to expand and stop the spasm that wants to strangle my lungs. It has taken a long time to learn to do

this-- but it truly does help. Our natural reaction is to suck in-- and hold the muscles tighter-- unstead of allowing them to relax and expand. Give it a try, and see if this helps, Tracie NS Co-owner/moderator See what's new at AOL.com and Make AOL Your Homepage. __________________________________________________

[Guest guest]

Marla, As to the heavy feeling that you got, did that mean you gained weight? I have been on it for a year now and have gained weight without changing my eating habits or anything. Anyway, do you think the neurontin results in weight gain? Thanks, DebbieMarla Bramer wrote: Hi Rick, I was on Neurontin for about 3 years, then I was doing better and went off that lasted about 6 mos. Then my doctor put me on Lyrica, and it is working great with no side effects, the neurontin seemed like it gave me a heavy feeling. Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Rick JackSent: Saturday, October 27, 2007 8:52 AMTo:

Neurosarcoidosis Subject: Re: Band feeling around ribs , The only thing that helps me is eating small meals and getting plenty of sleep. When I was released from the hospital several months ago I lost 30lbs but my waistline remained the same because of my stomach. No matter how hard I tried I could not pull my stomach in. Neurontin has helped me the most so

far, but they just switched me to Lyrica to see if that will reduce the banding. regards, Rickwendy_cidp <wendy_cidp (AT) yahoo (DOT) ca> wrote: Rick, mine feels just like you describe. My stomach sticks out so

muchit looks like I have instantly gained 10 pounds! And it's hard to breathe.I am usually very good at relaxation. Many years of yoga but I can'tcontrol any of this. - > One of athe biggest areas that sarc likes to attack isour muscles and ligaments. For many, this is a choice that docs

liketo biopsy. > When the sarc is in our lungs, it's generally outside the lungsalso. The muscles and ligaments that surround our ribcage harden, andwhen we end up with a cough-- it's like having an elephant on yourchest-- and you're trying to push him off. > I know whenever I get into a flare of my pulmonary symptoms, Ihave a rib that dislocates and pulls up onto the one above it. I havelearned to act as though I'm letting the air come into my lungs muchlike envisioning a ballon being blown up. By doing thisvisualization-- I'm able to allow the muscles to expand and stop thespasm that wants to strangle my lungs. > It has taken a long time to learn to do this-- but it truly doeshelp. Our natural reaction is to suck in-- and hold the musclestighter-- unstead of allowing them to relax and expand. > > Give it a try, and see if this helps,> Tracie> NS Co-owner/moderator>

> > > > ---------------------------------> See what's new at AOL.com and Make AOL Your Homepage.> > > > > > __________________________________________________>

[Guest guest]

Hi, Neurontin didn't make me gain weight. I went back to work and keep as active as I can despite the pain. It's important to get to your ideal weight if you want to beat this thing. regards, RickDebbie wrote: Marla, As to the heavy feeling that you got, did that mean you gained weight? I have been on it for a year now and have gained weight without changing my eating habits or anything. Anyway, do you think

the neurontin results in weight gain? Thanks, DebbieMarla Bramer <mebramer (AT) gmail (DOT) com> wrote: Hi Rick, I was on Neurontin for about 3 years, then I was doing better and went off that lasted about 6 mos. Then my doctor put me on Lyrica, and it is working great with no side effects, the neurontin seemed like it gave me a heavy feeling. Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Rick JackSent: Saturday, October 27, 2007 8:52 AMTo: Neurosarcoidosis Subject: Re: Band feeling around ribs , The only thing that helps me is eating small meals and getting plenty of sleep. When I was released from the hospital several months ago I lost 30lbs but my waistline remained the same because of my stomach. No matter how hard I tried I could not pull my stomach in. Neurontin has helped me the most so far, but they just switched me to Lyrica to see

if that will reduce the banding. regards, Rickwendy_cidp <wendy_cidp (AT) yahoo (DOT) ca> wrote: Rick, mine feels just like you describe. My stomach sticks out so muchit looks like I have instantly gained 10 pounds! And it's hard to breathe.I am usually very good at relaxation. Many years of yoga but I can'tcontrol any of this. - > One of athe biggest areas that sarc likes to attack isour muscles and ligaments. For many, this is a choice that docs liketo biopsy. > When the sarc is in our lungs, it's generally outside the lungsalso. The muscles and ligaments that surround our ribcage harden, andwhen we end up with a cough-- it's like

having an elephant on yourchest-- and you're trying to push him off. > I know whenever I get into a flare of my pulmonary symptoms, Ihave a rib that dislocates and pulls up onto the one above it. I havelearned to act as though I'm letting the air come into my lungs muchlike envisioning a ballon being blown up. By doing thisvisualization-- I'm able to allow the muscles to expand and stop thespasm that wants to strangle my lungs. > It has taken a long time to learn to do this-- but it truly doeshelp. Our natural reaction is to suck in-- and hold the musclestighter-- unstead of allowing them to relax and expand. > > Give it a try, and see if this helps,> Tracie> NS Co-owner/moderator> > > > > ---------------------------------> See what's new at AOL.com and Make AOL Your Homepage.> > > > > >

__________________________________________________>

[Guest guest]

Thanks Rick, for the info. I am just on so many meds., I don't know if one of them contributes it or not. (Im not on prednisone or steroids.) DebbieRick Jack wrote: Hi, Neurontin didn't make me gain weight. I went back to work and keep as

active as I can despite the pain. It's important to get to your ideal weight if you want to beat this thing. regards, RickDebbie wrote: Marla, As to the heavy feeling that you got, did that mean you gained weight? I have been on it for a year now and have gained weight without changing my eating habits or anything. Anyway, do you think the neurontin results in weight gain? Thanks, DebbieMarla Bramer <mebramer (AT) gmail (DOT) com> wrote: Hi

Rick, I was on Neurontin for about 3 years, then I was doing better and went off that lasted about 6 mos. Then my doctor put me on Lyrica, and it is working great with no side effects, the neurontin seemed like it gave me a heavy feeling. Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Rick JackSent: Saturday, October 27, 2007 8:52 AMTo: Neurosarcoidosis Subject: Re: Band feeling around ribs , The only thing that helps me is eating small meals and getting plenty of sleep. When I was released from the hospital several months ago I lost 30lbs but my waistline remained the same because of my stomach. No matter how hard I tried I could not pull my stomach in. Neurontin has helped me the most so far, but they just switched me to Lyrica to see if that will reduce the banding. regards, Rickwendy_cidp

<wendy_cidp (AT) yahoo (DOT) ca> wrote: Rick, mine feels just like you describe. My stomach sticks out so muchit looks like I have instantly gained 10 pounds! And it's hard to breathe.I am usually very good at relaxation. Many years of yoga but I can'tcontrol any of this. - > One of athe biggest areas that sarc likes to attack isour muscles and ligaments. For many, this is a choice that docs liketo biopsy. > When the sarc is in our lungs, it's generally outside the lungsalso. The muscles and ligaments that surround our ribcage harden, andwhen we end up with a cough-- it's like having an elephant on yourchest-- and you're trying to push him off. > I know whenever I get into a flare of my pulmonary symptoms, Ihave a rib that dislocates and pulls up onto the one above it. I havelearned to act as though I'm letting the air come into my lungs muchlike envisioning a ballon being blown up. By doing

thisvisualization-- I'm able to allow the muscles to expand and stop thespasm that wants to strangle my lungs. > It has taken a long time to learn to do this-- but it truly doeshelp. Our natural reaction is to suck in-- and hold the musclestighter-- unstead of allowing them to relax and expand. > > Give it a try, and see if this helps,> Tracie> NS Co-owner/moderator> > > > > ---------------------------------> See what's new at AOL.com and Make AOL Your Homepage.> > > > > > __________________________________________________>

[Guest guest]

, you've been missed. I hope the ol' sarc monster hibernates pretty soon so that you can join us more often.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: mary_s777@...Date: Mon, 29 Oct 2007 04:57:44 -0700Subject: Re: Band feeling around ribs

I've been meaning to join in on this discussion for awhile but I have been in the midst of a BAD 'banding' flare myself. To me it feels like someone is tightening a vise around my chest and the worst of it is on my left side. Months ago I had the nuclear series of heart tests to rule that out and I am fine in that area. I have to be careful of lifting ANYthing or doing anything with repetitive motion or I'll flare up. Usually I end up on some narcotics in addition to my usual pain regime. I believe the colder weather and lifting some pots(10-12) of plants (to go inside because of possible frost) a month ago brought this last flare on. From what I've just gone through...next time I'll let the buggers freeze. Or throw old sheets or towels on them and hope for the best. My hands swelling and pain also starts with the colder weather. I have to keep the place pretty warm to stave off a flare-up. When I go through these d*** awful flareups it makes me feel like crawling up in a ball and giving up. The pain is mind-numbing/piercing and then I go on the narcotics and numb out in a different way. The pain is like having pleurisy but it doen't accompany coughing or lung pain for me. Although if I get bronchitis or the like I usually end up with a 'flare', too, because of the coughing/repetitive movement. It all really sucks, doesn't it?... But there is still alot I can do so it could be worse. I leave the house maybe once a month, for a short time, and it often takes three or four days to recover. Well, this is way long enough for now and I'm gonna go lay down. I've had to skip alot of posts cuz of being so sick. I can't keep up. see ya soon hugs S.

Debbie <rozebudz36 (AT) yahoo (DOT) com> wrote:

Hi Rick, I had mentioned that I got that band too and the feeling of the "elephant on my chest" as Tracie mentioned. But my abdomen doesn the same thing. As soon as I start having breathing as well, I have the same problem. I have to undo my pants because it is so uncomfortable!!! Debbie Co ModeratorRick Jack <jack11973 (AT) yahoo (DOT) com> wrote:

Tracie,

When I get the banding pain I often get a Distended Abdomen as well. The band is pulling me tight while my stomach is going the other direction. I'm also very sensitive to temperature at those times, often feeling cold when everyone else is hot. No one (doctors) have an answer, I'm a case study for my hospital. Your symptoms seem very different than mine, showing the uniqueness of Sarc.

best regards,

Ricktiodaat (AT) aol (DOT) com wrote:

One of athe biggest areas that sarc likes to attack is our muscles and ligaments. For many, this is a choice that docs like to biopsy.

When the sarc is in our lungs, it's generally outside the lungs also. The muscles and ligaments that surround our ribcage harden, and when we end up with a cough-- it's like having an elephant on your chest-- and you're trying to push him off.

I know whenever I get into a flare of my pulmonary symptoms, I have a rib that dislocates and pulls up onto the one above it. I have learned to act as though I'm letting the air come into my lungs much like envisioning a ballon being blown up. By doing this visualization-- I'm able to allow the muscles to expand and stop the spasm that wants to strangle my lungs.

It has taken a long time to learn to do this-- but it truly does help. Our natural reaction is to suck in-- and hold the muscles tighter-- unstead of allowing them to relax and expand.

Give it a try, and see if this helps,

Tracie

NS Co-owner/moderator

See what's new at AOL.com and Make AOL Your Homepage.

__________________________________________________

[Guest guest]

Marla, That's good news about Lyrica, I hope it helps me as well. When I first got sarc I had pain in my legs as well. When I would stand for any longer than 30-60 seconds I'd be hit with Charley horse like pains in both legs from my ankles all the way up. My only option was to throw myself onto the bed and lie perfectly still until the pain went away. I couldn't walk for a month not to mention my hands were numb and painful and I was seeing double (not to mention the banding pain). I don't know where the sarc came from, I was in good health up till then. RickMarla Bramer wrote: Hi Rick, not sure if neurontin contributed to the wt gain, maybe some, steroids was my worst time, gained wt, I am still trying to lose 4 years later, I just had a feeling like my legs were tree stumps hard to move, it got better with time, but I always had a little of that feeling until I went off it, now I feel that way when my left leg goes numb and I can’t move it, feels like dead wt. but overall the lyrica is working well for me. Marla Marla Bramer Independent Beauty Consultant Kay cosmetics mbramer (AT) marykay (DOT) com www.marykay.com From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Rick JackSent: Monday, October 29, 2007 5:46 AMTo: Neurosarcoidosis Subject: RE: Band feeling around ribs Hi, Neurontin didn't make me gain weight. I went back to work and keep as active as I can despite the pain. It's important to get to your ideal weight if you want to beat this thing. regards, RickDebbie <rozebudz36 (AT) yahoo (DOT) com> wrote: Marla, As to the heavy feeling that you got, did that mean you gained weight? I have been on it for a year now and have gained weight without changing my eating habits or anything. Anyway, do you think the neurontin results in weight gain? Thanks, DebbieMarla Bramer <mebramer (AT) gmail (DOT) com> wrote: Hi Rick, I was on Neurontin for about 3 years, then I was doing better and went off that lasted about 6 mos. Then my doctor put me on

Lyrica, and it is working great with no side effects, the neurontin seemed like it gave me a heavy feeling. Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Rick JackSent: Saturday, October 27, 2007 8:52 AMTo: Neurosarcoidosis Subject: Re: Band feeling around ribs , The only thing that helps me is eating small meals and getting plenty of sleep. When I was released from the hospital several months ago I lost 30lbs but my waistline remained the same because of my stomach. No matter how hard I tried I could not pull my stomach in. Neurontin has helped me the most so far, but they

just switched me to Lyrica to see if that will reduce the banding. regards, Rickwendy_cidp <wendy_cidp (AT) yahoo (DOT) ca> wrote: Rick, mine feels just like you describe. My stomach sticks out so muchit looks like I have instantly gained 10 pounds! And it's hard to breathe.I am usually very good at relaxation. Many years of yoga but I can'tcontrol any of this. -

> One of athe biggest areas that sarc likes to attack isour muscles and ligaments. For many, this is a choice that docs liketo biopsy. > When the sarc is in our lungs, it's generally outside the lungsalso. The muscles and ligaments that surround our ribcage harden, andwhen we end up

with a cough-- it's like having an elephant on yourchest-- and you're trying to push him off. > I know whenever I get into a flare of my pulmonary symptoms, Ihave a rib that dislocates and pulls up onto the one above it. I havelearned to act as though I'm letting the air come into my lungs muchlike envisioning a ballon being blown up. By doing thisvisualization-- I'm able to allow the muscles to expand and stop thespasm that wants to strangle my lungs. > It has taken a long time to learn to do this-- but it truly doeshelp. Our natural reaction is to suck in-- and hold the musclestighter-- unstead of allowing them to relax and expand. > > Give it a try, and see if this helps,> Tracie> NS Co-owner/moderator> > > > > ---------------------------------> See what's new at AOL.com and Make AOL Your Homepage.> > > >

> > __________________________________________________>

[Guest guest]

Hi Rick,

not sure if neurontin contributed to the wt gain, maybe some, steroids was my

worst time, gained wt, I am still trying to lose 4 years later, I just had a

feeling like my legs were tree stumps hard to move, it got better with time,

but I always had a little of that feeling until I went off it, now I feel that

way when my left leg goes numb and I can’t move it, feels like dead wt. 

but overall the lyrica is working well for me.  Marla

Marla Bramer

Independent Beauty

Consultant

Kay cosmetics

mbramer@...

www.marykay.com

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Rick Jack

Sent: Monday, October 29, 2007

5:46 AM

To: Neurosarcoidosis

Subject: RE:

Band feeling around ribs

Hi,

Neurontin didn't make me gain weight. I went back to

work and keep as active as I can despite the pain. It's important to get to

your ideal weight if you want to beat this thing.

regards,

Rick

Debbie

<rozebudz36 (AT) yahoo (DOT) com> wrote:

Marla, As to the heavy feeling that you got, did that mean you

gained weight? I have been on it for a year now and have gained weight

without changing my eating habits or anything. Anyway, do you think the

neurontin results in weight gain? Thanks, Debbie

Marla Bramer

<mebramer (AT) gmail (DOT) com> wrote:

Hi

Rick,

I was on

Neurontin for about 3 years, then I was doing better and went off that lasted

about 6 mos. Then my doctor put me on Lyrica, and it is working great with no

side effects, the neurontin seemed like it gave me a heavy feeling. Marla

From: Neurosarcoidosis

[mailto:Neurosarcoidosis ]

On Behalf Of Rick Jack

Sent: Saturday, October 27, 2007

8:52 AM

To: Neurosarcoidosis

Subject: Re: Band

feeling around ribs

,

The only thing that helps me is eating small meals and getting

plenty of sleep. When I was released from the hospital several months ago

I lost 30lbs but my waistline remained the same because of my stomach. No

matter how hard I tried I could not pull my stomach in. Neurontin has helped me

the most so far, but they just switched me to Lyrica to see if that will reduce

the banding.

regards,

Rick

wendy_cidp

<wendy_cidp (AT) yahoo (DOT) ca> wrote:

Rick, mine feels just like you describe. My stomach sticks out so much

it looks like I have instantly gained 10 pounds! And it's hard to breathe.

I am usually very good at relaxation. Many years of yoga but I can't

control any of this. -

> One of athe biggest areas that sarc likes to attack is

our muscles and ligaments. For many, this is a choice that docs like

to biopsy.

> When the sarc is in our lungs, it's generally outside the lungs

also. The muscles and ligaments that surround our ribcage harden, and

when we end up with a cough-- it's like having an elephant on your

chest-- and you're trying to push him off.

> I know whenever I get into a flare of my pulmonary symptoms, I

have a rib that dislocates and pulls up onto the one above it. I have

learned to act as though I'm letting the air come into my lungs much

like envisioning a ballon being blown up. By doing this

visualization-- I'm able to allow the muscles to expand and stop the

spasm that wants to strangle my lungs.

> It has taken a long time to learn to do this-- but it truly does

help. Our natural reaction is to suck in-- and hold the muscles

tighter-- unstead of allowing them to relax and expand.

>

> Give it a try, and see if this helps,

> Tracie

> NS Co-owner/moderator

>

>

>

>

> ---------------------------------

> See what's new at AOL.com and Make AOL Your Homepage.

>

>

>

>

>

> __________________________________________________

>

[Guest guest]

I've not had the band feeling around my chest or abdomen, but I used to get it around my thighs & I'm been having it on my feet for a couple of years. It's getting worse in my feet. To me it feels like a blood pressure cuff being pumped up too high & left on. But my feet (and my thighs in the past) look perfectly normal--no swelling or discoloration

Personally I think it's that we have areas of vasculitis of the long vessels and because of the swelling of vessels, you are getting some inpingement of the nerves by the myelin sheath.

I don't know about the rest of you, but I know that as the weather cools down, I am having to really REALLY work at keeping my hydration up. I'm currently looking at having a brain MRI as well as an EEG next week-- and depending on what they find there-- we'll look into endocrine screw-up-ances, to figure out the other parts.

A high or low thyroid can cause nerve pain. So can high blood sugar and so can chronic inflammation and dehydration. The thyroid stuff also causes the body to not be able to handle temperature changes, and is primary to foggy thinking. Hmmm, another component-- aaaaarrrrggghh.

Take care,

Tracie

NS Co-owner/moderatorSee what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

I've not had the band feeling around my chest or abdomen, but I used to get it around my thighs & I'm been having it on my feet for a couple of years. It's getting worse in my feet. To me it feels like a blood pressure cuff being pumped up too high & left on. But my feet (and my thighs in the past) look perfectly normal--no swelling or discoloration

Personally I think it's that we have areas of vasculitis of the long vessels and because of the swelling of vessels, you are getting some inpingement of the nerves by the myelin sheath.

I don't know about the rest of you, but I know that as the weather cools down, I am having to really REALLY work at keeping my hydration up. I'm currently looking at having a brain MRI as well as an EEG next week-- and depending on what they find there-- we'll look into endocrine screw-up-ances, to figure out the other parts.

A high or low thyroid can cause nerve pain. So can high blood sugar and so can chronic inflammation and dehydration. The thyroid stuff also causes the body to not be able to handle temperature changes, and is primary to foggy thinking. Hmmm, another component-- aaaaarrrrggghh.

Take care,

Tracie

NS Co-owner/moderatorSee what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

Rick I’m

sorry to hear you got hit so hard out of the blue, I was eased into this

disease, first in the lungs, then remission, then the lungs again, remission,

then lungs and skin, then neuro, now everything, but this has been over the

past 13 years. But know many get hit hard out the blue too. I hope things get

better for you now. Marla

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Rick Jack

Sent: Monday, October 29, 2007

10:18 AM

To: Neurosarcoidosis

Subject: RE:

Band feeling around ribs

Marla,

That's good news about Lyrica, I hope it helps me as well. When

I first got sarc I had pain in my legs as well. When I would stand for any

longer than 30-60 seconds I'd be hit with Charley horse like pains in both legs

from my ankles all the way up. My only option was to throw myself onto the bed

and lie perfectly still until the pain went away. I couldn't walk for a month

not to mention my hands were numb and painful and I was seeing double (not

to mention the banding pain). I don't know where the sarc came from, I was in

good health up till then.

Rick

Marla Bramer

<mebramer (AT) gmail (DOT) com> wrote:

Hi Rick,

not sure if neurontin contributed to the wt gain, maybe some, steroids was my

worst time, gained wt, I am still trying to lose 4 years later, I just had a feeling

like my legs were tree stumps hard to move, it got better with time, but I

always had a little of that feeling until I went off it, now I feel that way

when my left leg goes numb and I can’t move it, feels like dead wt.

but overall the lyrica is working well for me. Marla

Marla Bramer

Independent Beauty

Consultant

Kay cosmetics

mbramer (AT) marykay (DOT) com

www.marykay.com

From: Neurosarcoidosis

[mailto:Neurosarcoidosis ]

On Behalf Of Rick Jack

Sent: Monday, October 29, 2007

5:46 AM

To: Neurosarcoidosis

Subject: RE: Band

feeling around ribs

Hi,

Neurontin didn't make me gain weight. I went

back to work and keep as active as I can despite the pain. It's important to

get to your ideal weight if you want to beat this thing.

regards,

Rick

Debbie

<rozebudz36 (AT) yahoo (DOT) com> wrote:

Marla, As to the heavy feeling that you got, did that mean you

gained weight? I have been on it for a year now and have gained weight

without changing my eating habits or anything. Anyway, do you think the

neurontin results in weight gain? Thanks, Debbie

Marla Bramer

<mebramer (AT) gmail (DOT) com> wrote:

Hi

Rick,

I was on

Neurontin for about 3 years, then I was doing better and went off that lasted

about 6 mos. Then my doctor put me on Lyrica, and it is working great with no

side effects, the neurontin seemed like it gave me a heavy feeling. Marla

From: Neurosarcoidosis

[mailto:Neurosarcoidosis ]

On Behalf Of Rick Jack

Sent: Saturday, October 27, 2007

8:52 AM

To: Neurosarcoidosis

Subject: Re: Band

feeling around ribs

,

The only thing that helps me is eating small meals and getting

plenty of sleep. When I was released from the hospital several months ago

I lost 30lbs but my waistline remained the same because of my stomach. No

matter how hard I tried I could not pull my stomach in. Neurontin has helped me

the most so far, but they just switched me to Lyrica to see if that will reduce

the banding.

regards,

Rick

wendy_cidp

<wendy_cidp (AT) yahoo (DOT) ca> wrote:

Rick, mine feels just like you describe. My stomach sticks out so much

it looks like I have instantly gained 10 pounds! And it's hard to breathe.

I am usually very good at relaxation. Many years of yoga but I can't

control any of this. -

> One of athe biggest areas that sarc likes to attack is

our muscles and ligaments. For many, this is a choice that docs like

to biopsy.

> When the sarc is in our lungs, it's generally outside the lungs

also. The muscles and ligaments that surround our ribcage harden, and

when we end up with a cough-- it's like having an elephant on your

chest-- and you're trying to push him off.

> I know whenever I get into a flare of my pulmonary symptoms, I

have a rib that dislocates and pulls up onto the one above it. I have

learned to act as though I'm letting the air come into my lungs much

like envisioning a ballon being blown up. By doing this

visualization-- I'm able to allow the muscles to expand and stop the

spasm that wants to strangle my lungs.

> It has taken a long time to learn to do this-- but it truly does

help. Our natural reaction is to suck in-- and hold the muscles

tighter-- unstead of allowing them to relax and expand.

>

> Give it a try, and see if this helps,

> Tracie

> NS Co-owner/moderator

>

>

>

>

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