Re: My pain and function, fibro, Lignocaine - To Bethann

[Guest guest]

Bethann, thanks so much for sharing. I have missed you here. I am glad you are

still with us.

love and hugs,

Debra V.

Bethann wrote:

This post is just to explain my baseline, so you can nderstand how

much the treatment helps. I did it this way to shorten the post.

I read all the posts, but rarely post myself because I have been

demonised because I because some of my beliefs differ from those that

are popular on the group, but I get a treatment that makes my life

more tolerable and less obstructive than many I read about on here. I

don't know how I would survive without this treatment. Even if you

don't like me, give this a read because there may be a chance it will

help you too. I give links to the research, as well as info on

metformin in polycystic ovarian syndrome.

I don't know the availability in the US, but the research shows that

ligonocaine (we call it lignocaine here, you call it lidocaine there)

works very VERY well for some people, not at all for a few, and the

majority of people get at least some help.

My back is the worst part of my pain- I have fibro after not getting

any pain relief for 4 months when they all thought I was faking...

then they found a serious problem and fell over themselves trying to

give me pain relief, but too late to stop fibro from happening.. I

have what the medics call allodinia and hyperalgesia, developed after

the infection in intrevertebral disks and surgery to repair it by

putting in new disks in t4-5 and t5-6, repairing/ cleaning disks in

t1-2, 2-3, 3-4,and putting in two vertical rods plus 6 cross pieces,

left " loose " nerves (nerves that leave the spine but don't go

anywhere, small nerves that should have just reconnected), pressure

from damaged foramen (the holes through which the nerves leave the

spinal cord and go to the tissues) and scar tissue which is diffuse

throughout the spinal column in my neck back but not below the bottom

of the thorax. Physio has been unsuccessul, but I go to the gym and

try to walk in the water, as I cannot swim laps anymore.

The allodinia means that the pain is perceived as outside my

body- it's weird, like I have backpack made of nettles and hot

molten glass with thorns in it. It is right over the area between and

over my shoulder blades, from my neck to my mid back- it feels heavy,

sharp, hot, and inescapable, Everything makes it worse- spray from a

shower, my hair touching it, clothing, changes in temperature,

pressure, flying makes it worse. When it flares, there is nothing I

can take save morphine infusion, but even that just makes me not care

more than not hurt. Hyperalgesia means that everything, even a gentle

touch, is perceived as pain, many of you have that too- even a gentle

stroke hurts and makes the central pain worse. My whole back has this

sensation... and I also have the fibro symptoms, in my chest, face,

hands, feet, neck and thighs. One of my thighs is always on pins and

needles, and cramps so badly that I wake up screaming and poor

husband has to cope, as he does. He does everythin for me, as I

cannot raise my arms up, and have so little energy.

meds: I take, 30 to 120mg MST (oral sustained release morphine)

twice a day , 200mg pregabalyn/ Lyrica 3 x day (although it drops to

100 twice a day after treatment), oramporph as much as I need when I

need it, codeine 30-60mg plus paracetamol/acetaminophen when I need

it (but it makes me sleepy), and a 100mcg Fentanyl patch- the flat

not the bubble kind- covered with a tegaderm, every 3 days. The

fentanyl provides the threshold pain management- it's fab. This is

the lowest dose I can go to- although before the treatments started I

was on 200mcg. I tried 75mcg but the pain was too intense. If you use

it, try to get the " flat " rather than the " bubble " patches- I found a

huge difference, in relief and in damage to skin.

((-))I also take metformin 850 twice a day- not because I am diabetic

but because I have Polycystic ovarian syndrome(PCOS), and metformin

can help with carbohydrate binges, and insulin resistance in women

with PCOS: if you have PCOS< get your Doc to use metformin- you will

feel better, have more energy and lose weight

http://www.endo-

society.org/publications/periodicals/endo_news/tri_point/upload/3%

20Perspectives%20on%20PCOS.pdf

About the hospital:

There are three toilets shared by two 4 bed wards. One is a

small loo only, one is a huge loo with storage for

wheelchair/commodes, the third is a shower room. There is a tubroom

with the most wonderful tub in the world- its huge, there is a lift

to get you in and out, the water is oh so hot and no matter how tall

you are you can lie down in it, and have a good soak. The first

question I ask when admitted is when can I have a bath? They know it

helps, so every night they try to get me in the tub... I wish I could

have one of those tubs.

There is one small telly in the ward, so no one really watches

it except those addicted to soaps, which are mainly in the early

evening

Although not recommended to get up too much as the lignocaine/

lidocaine can make you dizzy and weak, I have to get up. The day room

has a huge telly, stereo, CD/DVD player, books, games... t's a good

escape as some of the people admitted really get a lot of self esteem

from their pain and illness, and do nothing all day except talk about

their limitations, drugs, surgeries, doctor's visits, etc and it

makes me crazy. All I think about it work, getting back to work, my

husband, and enjoying life with him- I don't want to be sick, but

have no choice. Some of the others absolutely love being sick and act

all pathetic when visitors come and then are fine when they leave.

Anyway. I don't tell people when I go in because I don't like people

seeing me in piggies (pajamas in " English " ) and stuck in bed. We are

allowed to kep our mobile phones as long as they are on silent, and I

have a mobile internet connection on my laptop and DVD player to keep

me busy

Part 2 will explain the treatment and how much it helps.

Bethann

---------------------------------

Never miss a thing. Make Yahoo your homepage.

[Guest guest]

debra van ness wrote: Bethann, thanks so much

for sharing. I have missed you here. I am glad you are still with us.

love and hugs,

Debra V.

Bethann wrote:

This post is just to explain my baseline, so you can nderstand how

much the treatment helps. I did it this way to shorten the post.

I read all the posts, but rarely post myself because I have been

demonised because I because some of my beliefs differ from those that

are popular on the group, but I get a treatment that makes my life

more tolerable and less obstructive than many I read about on here. I

don't know how I would survive without this treatment. Even if you

don't like me, give this a read because there may be a chance it will

help you too. I give links to the research, as well as info on

metformin in polycystic ovarian syndrome.

I don't know the availability in the US, but the research shows that

ligonocaine (we call it lignocaine here, you call it lidocaine there)

works very VERY well for some people, not at all for a few, and the

majority of people get at least some help.

My back is the worst part of my pain- I have fibro after not getting

any pain relief for 4 months when they all thought I was faking...

then they found a serious problem and fell over themselves trying to

give me pain relief, but too late to stop fibro from happening.. I

have what the medics call allodinia and hyperalgesia, developed after

the infection in intrevertebral disks and surgery to repair it by

putting in new disks in t4-5 and t5-6, repairing/ cleaning disks in

t1-2, 2-3, 3-4,and putting in two vertical rods plus 6 cross pieces,

left " loose " nerves (nerves that leave the spine but don't go

anywhere, small nerves that should have just reconnected), pressure

from damaged foramen (the holes through which the nerves leave the

spinal cord and go to the tissues) and scar tissue which is diffuse

throughout the spinal column in my neck back but not below the bottom

of the thorax. Physio has been unsuccessul, but I go to the gym and

try to walk in the water, as I cannot swim laps anymore.

The allodinia means that the pain is perceived as outside my

body- it's weird, like I have backpack made of nettles and hot

molten glass with thorns in it. It is right over the area between and

over my shoulder blades, from my neck to my mid back- it feels heavy,

sharp, hot, and inescapable, Everything makes it worse- spray from a

shower, my hair touching it, clothing, changes in temperature,

pressure, flying makes it worse. When it flares, there is nothing I

can take save morphine infusion, but even that just makes me not care

more than not hurt. Hyperalgesia means that everything, even a gentle

touch, is perceived as pain, many of you have that too- even a gentle

stroke hurts and makes the central pain worse. My whole back has this

sensation... and I also have the fibro symptoms, in my chest, face,

hands, feet, neck and thighs. One of my thighs is always on pins and

needles, and cramps so badly that I wake up screaming and poor

husband has to cope, as he does. He does everythin for me, as I

cannot raise my arms up, and have so little energy.

meds: I take, 30 to 120mg MST (oral sustained release morphine)

twice a day , 200mg pregabalyn/ Lyrica 3 x day (although it drops to

100 twice a day after treatment), oramporph as much as I need when I

need it, codeine 30-60mg plus paracetamol/acetaminophen when I need

it (but it makes me sleepy), and a 100mcg Fentanyl patch- the flat

not the bubble kind- covered with a tegaderm, every 3 days. The

fentanyl provides the threshold pain management- it's fab. This is

the lowest dose I can go to- although before the treatments started I

was on 200mcg. I tried 75mcg but the pain was too intense. If you use

it, try to get the " flat " rather than the " bubble " patches- I found a

huge difference, in relief and in damage to skin.

((-))I also take metformin 850 twice a day- not because I am diabetic

but because I have Polycystic ovarian syndrome(PCOS), and metformin

can help with carbohydrate binges, and insulin resistance in women

with PCOS: if you have PCOS< get your Doc to use metformin- you will

feel better, have more energy and lose weight

http://www.endo-

society.org/publications/periodicals/endo_news/tri_point/upload/3%

20Perspectives%20on%20PCOS.pdf

About the hospital:

There are three toilets shared by two 4 bed wards. One is a

small loo only, one is a huge loo with storage for

wheelchair/commodes, the third is a shower room. There is a tubroom

with the most wonderful tub in the world- its huge, there is a lift

to get you in and out, the water is oh so hot and no matter how tall

you are you can lie down in it, and have a good soak. The first

question I ask when admitted is when can I have a bath? They know it

helps, so every night they try to get me in the tub... I wish I could

have one of those tubs.

There is one small telly in the ward, so no one really watches

it except those addicted to soaps, which are mainly in the early

evening

Although not recommended to get up too much as the lignocaine/

lidocaine can make you dizzy and weak, I have to get up. The day room

has a huge telly, stereo, CD/DVD player, books, games... t's a good

escape as some of the people admitted really get a lot of self esteem

from their pain and illness, and do nothing all day except talk about

their limitations, drugs, surgeries, doctor's visits, etc and it

makes me crazy. All I think about it work, getting back to work, my

husband, and enjoying life with him- I don't want to be sick, but

have no choice. Some of the others absolutely love being sick and act

all pathetic when visitors come and then are fine when they leave.

Anyway. I don't tell people when I go in because I don't like people

seeing me in piggies (pajamas in " English " ) and stuck in bed. We are

allowed to kep our mobile phones as long as they are on silent, and I

have a mobile internet connection on my laptop and DVD player to keep

me busy

Part 2 will explain the treatment and how much it helps.

Bethann

---------------------------------

Never miss a thing. Make Yahoo your homepage.

[Guest guest]

debra van ness wrote: Bethann, thanks so much

for sharing. I have missed you here. I am glad you are still with us.

love and hugs,

Debra V.

Bethann wrote:

This post is just to explain my baseline, so you can nderstand how

much the treatment helps. I did it this way to shorten the post.

I read all the posts, but rarely post myself because I have been

demonised because I because some of my beliefs differ from those that

are popular on the group, but I get a treatment that makes my life

more tolerable and less obstructive than many I read about on here. I

don't know how I would survive without this treatment. Even if you

don't like me, give this a read because there may be a chance it will

help you too. I give links to the research, as well as info on

metformin in polycystic ovarian syndrome.

I don't know the availability in the US, but the research shows that

ligonocaine (we call it lignocaine here, you call it lidocaine there)

works very VERY well for some people, not at all for a few, and the

majority of people get at least some help.

My back is the worst part of my pain- I have fibro after not getting

any pain relief for 4 months when they all thought I was faking...

then they found a serious problem and fell over themselves trying to

give me pain relief, but too late to stop fibro from happening.. I

have what the medics call allodinia and hyperalgesia, developed after

the infection in intrevertebral disks and surgery to repair it by

putting in new disks in t4-5 and t5-6, repairing/ cleaning disks in

t1-2, 2-3, 3-4,and putting in two vertical rods plus 6 cross pieces,

left " loose " nerves (nerves that leave the spine but don't go

anywhere, small nerves that should have just reconnected), pressure

from damaged foramen (the holes through which the nerves leave the

spinal cord and go to the tissues) and scar tissue which is diffuse

throughout the spinal column in my neck back but not below the bottom

of the thorax. Physio has been unsuccessul, but I go to the gym and

try to walk in the water, as I cannot swim laps anymore.

The allodinia means that the pain is perceived as outside my

body- it's weird, like I have backpack made of nettles and hot

molten glass with thorns in it. It is right over the area between and

over my shoulder blades, from my neck to my mid back- it feels heavy,

sharp, hot, and inescapable, Everything makes it worse- spray from a

shower, my hair touching it, clothing, changes in temperature,

pressure, flying makes it worse. When it flares, there is nothing I

can take save morphine infusion, but even that just makes me not care

more than not hurt. Hyperalgesia means that everything, even a gentle

touch, is perceived as pain, many of you have that too- even a gentle

stroke hurts and makes the central pain worse. My whole back has this

sensation... and I also have the fibro symptoms, in my chest, face,

hands, feet, neck and thighs. One of my thighs is always on pins and

needles, and cramps so badly that I wake up screaming and poor

husband has to cope, as he does. He does everythin for me, as I

cannot raise my arms up, and have so little energy.

meds: I take, 30 to 120mg MST (oral sustained release morphine)

twice a day , 200mg pregabalyn/ Lyrica 3 x day (although it drops to

100 twice a day after treatment), oramporph as much as I need when I

need it, codeine 30-60mg plus paracetamol/acetaminophen when I need

it (but it makes me sleepy), and a 100mcg Fentanyl patch- the flat

not the bubble kind- covered with a tegaderm, every 3 days. The

fentanyl provides the threshold pain management- it's fab. This is

the lowest dose I can go to- although before the treatments started I

was on 200mcg. I tried 75mcg but the pain was too intense. If you use

it, try to get the " flat " rather than the " bubble " patches- I found a

huge difference, in relief and in damage to skin.

((-))I also take metformin 850 twice a day- not because I am diabetic

but because I have Polycystic ovarian syndrome(PCOS), and metformin

can help with carbohydrate binges, and insulin resistance in women

with PCOS: if you have PCOS< get your Doc to use metformin- you will

feel better, have more energy and lose weight

http://www.endo-

society.org/publications/periodicals/endo_news/tri_point/upload/3%

20Perspectives%20on%20PCOS.pdf

About the hospital:

There are three toilets shared by two 4 bed wards. One is a

small loo only, one is a huge loo with storage for

wheelchair/commodes, the third is a shower room. There is a tubroom

with the most wonderful tub in the world- its huge, there is a lift

to get you in and out, the water is oh so hot and no matter how tall

you are you can lie down in it, and have a good soak. The first

question I ask when admitted is when can I have a bath? They know it

helps, so every night they try to get me in the tub... I wish I could

have one of those tubs.

There is one small telly in the ward, so no one really watches

it except those addicted to soaps, which are mainly in the early

evening

Although not recommended to get up too much as the lignocaine/

lidocaine can make you dizzy and weak, I have to get up. The day room

has a huge telly, stereo, CD/DVD player, books, games... t's a good

escape as some of the people admitted really get a lot of self esteem

from their pain and illness, and do nothing all day except talk about

their limitations, drugs, surgeries, doctor's visits, etc and it

makes me crazy. All I think about it work, getting back to work, my

husband, and enjoying life with him- I don't want to be sick, but

have no choice. Some of the others absolutely love being sick and act

all pathetic when visitors come and then are fine when they leave.

Anyway. I don't tell people when I go in because I don't like people

seeing me in piggies (pajamas in " English " ) and stuck in bed. We are

allowed to kep our mobile phones as long as they are on silent, and I

have a mobile internet connection on my laptop and DVD player to keep

me busy

Part 2 will explain the treatment and how much it helps.

Bethann

---------------------------------

Never miss a thing. Make Yahoo your homepage.

[Guest guest]

debra van ness wrote: Bethann, thanks so much

for sharing. I have missed you here. I am glad you are still with us.

love and hugs,

Debra V.

Bethann wrote:

This post is just to explain my baseline, so you can nderstand how

much the treatment helps. I did it this way to shorten the post.

I read all the posts, but rarely post myself because I have been

demonised because I because some of my beliefs differ from those that

are popular on the group, but I get a treatment that makes my life

more tolerable and less obstructive than many I read about on here. I

don't know how I would survive without this treatment. Even if you

don't like me, give this a read because there may be a chance it will

help you too. I give links to the research, as well as info on

metformin in polycystic ovarian syndrome.

I don't know the availability in the US, but the research shows that

ligonocaine (we call it lignocaine here, you call it lidocaine there)

works very VERY well for some people, not at all for a few, and the

majority of people get at least some help.

My back is the worst part of my pain- I have fibro after not getting

any pain relief for 4 months when they all thought I was faking...

then they found a serious problem and fell over themselves trying to

give me pain relief, but too late to stop fibro from happening.. I

have what the medics call allodinia and hyperalgesia, developed after

the infection in intrevertebral disks and surgery to repair it by

putting in new disks in t4-5 and t5-6, repairing/ cleaning disks in

t1-2, 2-3, 3-4,and putting in two vertical rods plus 6 cross pieces,

left " loose " nerves (nerves that leave the spine but don't go

anywhere, small nerves that should have just reconnected), pressure

from damaged foramen (the holes through which the nerves leave the

spinal cord and go to the tissues) and scar tissue which is diffuse

throughout the spinal column in my neck back but not below the bottom

of the thorax. Physio has been unsuccessul, but I go to the gym and

try to walk in the water, as I cannot swim laps anymore.

The allodinia means that the pain is perceived as outside my

body- it's weird, like I have backpack made of nettles and hot

molten glass with thorns in it. It is right over the area between and

over my shoulder blades, from my neck to my mid back- it feels heavy,

sharp, hot, and inescapable, Everything makes it worse- spray from a

shower, my hair touching it, clothing, changes in temperature,

pressure, flying makes it worse. When it flares, there is nothing I

can take save morphine infusion, but even that just makes me not care

more than not hurt. Hyperalgesia means that everything, even a gentle

touch, is perceived as pain, many of you have that too- even a gentle

stroke hurts and makes the central pain worse. My whole back has this

sensation... and I also have the fibro symptoms, in my chest, face,

hands, feet, neck and thighs. One of my thighs is always on pins and

needles, and cramps so badly that I wake up screaming and poor

husband has to cope, as he does. He does everythin for me, as I

cannot raise my arms up, and have so little energy.

meds: I take, 30 to 120mg MST (oral sustained release morphine)

twice a day , 200mg pregabalyn/ Lyrica 3 x day (although it drops to

100 twice a day after treatment), oramporph as much as I need when I

need it, codeine 30-60mg plus paracetamol/acetaminophen when I need

it (but it makes me sleepy), and a 100mcg Fentanyl patch- the flat

not the bubble kind- covered with a tegaderm, every 3 days. The

fentanyl provides the threshold pain management- it's fab. This is

the lowest dose I can go to- although before the treatments started I

was on 200mcg. I tried 75mcg but the pain was too intense. If you use

it, try to get the " flat " rather than the " bubble " patches- I found a

huge difference, in relief and in damage to skin.

((-))I also take metformin 850 twice a day- not because I am diabetic

but because I have Polycystic ovarian syndrome(PCOS), and metformin

can help with carbohydrate binges, and insulin resistance in women

with PCOS: if you have PCOS< get your Doc to use metformin- you will

feel better, have more energy and lose weight

http://www.endo-

society.org/publications/periodicals/endo_news/tri_point/upload/3%

20Perspectives%20on%20PCOS.pdf

About the hospital:

There are three toilets shared by two 4 bed wards. One is a

small loo only, one is a huge loo with storage for

wheelchair/commodes, the third is a shower room. There is a tubroom

with the most wonderful tub in the world- its huge, there is a lift

to get you in and out, the water is oh so hot and no matter how tall

you are you can lie down in it, and have a good soak. The first

question I ask when admitted is when can I have a bath? They know it

helps, so every night they try to get me in the tub... I wish I could

have one of those tubs.

There is one small telly in the ward, so no one really watches

it except those addicted to soaps, which are mainly in the early

evening

Although not recommended to get up too much as the lignocaine/

lidocaine can make you dizzy and weak, I have to get up. The day room

has a huge telly, stereo, CD/DVD player, books, games... t's a good

escape as some of the people admitted really get a lot of self esteem

from their pain and illness, and do nothing all day except talk about

their limitations, drugs, surgeries, doctor's visits, etc and it

makes me crazy. All I think about it work, getting back to work, my

husband, and enjoying life with him- I don't want to be sick, but

have no choice. Some of the others absolutely love being sick and act

all pathetic when visitors come and then are fine when they leave.

Anyway. I don't tell people when I go in because I don't like people

seeing me in piggies (pajamas in " English " ) and stuck in bed. We are

allowed to kep our mobile phones as long as they are on silent, and I

have a mobile internet connection on my laptop and DVD player to keep

me busy

Part 2 will explain the treatment and how much it helps.

Bethann

---------------------------------

Never miss a thing. Make Yahoo your homepage.