New member

[Guest guest]

Welcome welcome Robin! I am glad that you are part of the family!

Jill

[Guest guest]

hi lyn and welcome,

I ws dx with RSD in July of this year..i got it form an injury to my neck from a car accident and the RSD affects most of my upper body...including my scalp and face. Just jump in and give advice and support when someone asks and you feel you can help...and ask away and hopefully one of us can help you...and feel free to vent. Everyone here is very supportive, friendly, informative and non judgemntal. Glad you have joined this wonderful group...Hugs..Ginnylynlorraine wrote:

Hello to all,I have just signed up in my attempt to handle the fact that the RSD has returned after some years of being completely free of pain and symptoms. I was called a classic case in 1994. It only took several months of debilitating pain after a crush and fracture of my left ankle for a second doctor to diagnose RSD and then the struggle of pain as you all know was life changing plus losing the ability to walk for years. My story of recovery after years of extreme pain and disability is to me and others a miracle and I have been grateful everyday. Now I face the challenge one again. On one hand I am armed with information from my experience and know that I am not crazy. On the other hand I know very well what may be my future and I am frightened. I hope to make some contact via

internet that I didn't have access to in the 90's. Any suggestions for how to best use this group would be appreciated and is there anyway I may contribute my experience. Thank you for your time, Lyn

[Guest guest]

hi lyn and welcome,

I ws dx with RSD in July of this year..i got it form an injury to my neck from a car accident and the RSD affects most of my upper body...including my scalp and face. Just jump in and give advice and support when someone asks and you feel you can help...and ask away and hopefully one of us can help you...and feel free to vent. Everyone here is very supportive, friendly, informative and non judgemntal. Glad you have joined this wonderful group...Hugs..Ginnylynlorraine wrote:

Hello to all,I have just signed up in my attempt to handle the fact that the RSD has returned after some years of being completely free of pain and symptoms. I was called a classic case in 1994. It only took several months of debilitating pain after a crush and fracture of my left ankle for a second doctor to diagnose RSD and then the struggle of pain as you all know was life changing plus losing the ability to walk for years. My story of recovery after years of extreme pain and disability is to me and others a miracle and I have been grateful everyday. Now I face the challenge one again. On one hand I am armed with information from my experience and know that I am not crazy. On the other hand I know very well what may be my future and I am frightened. I hope to make some contact via

internet that I didn't have access to in the 90's. Any suggestions for how to best use this group would be appreciated and is there anyway I may contribute my experience. Thank you for your time, Lyn

[Guest guest]

hi lyn and welcome,

I ws dx with RSD in July of this year..i got it form an injury to my neck from a car accident and the RSD affects most of my upper body...including my scalp and face. Just jump in and give advice and support when someone asks and you feel you can help...and ask away and hopefully one of us can help you...and feel free to vent. Everyone here is very supportive, friendly, informative and non judgemntal. Glad you have joined this wonderful group...Hugs..Ginnylynlorraine wrote:

Hello to all,I have just signed up in my attempt to handle the fact that the RSD has returned after some years of being completely free of pain and symptoms. I was called a classic case in 1994. It only took several months of debilitating pain after a crush and fracture of my left ankle for a second doctor to diagnose RSD and then the struggle of pain as you all know was life changing plus losing the ability to walk for years. My story of recovery after years of extreme pain and disability is to me and others a miracle and I have been grateful everyday. Now I face the challenge one again. On one hand I am armed with information from my experience and know that I am not crazy. On the other hand I know very well what may be my future and I am frightened. I hope to make some contact via

internet that I didn't have access to in the 90's. Any suggestions for how to best use this group would be appreciated and is there anyway I may contribute my experience. Thank you for your time, Lyn

[Guest guest]

Welcome to the group. I hope that you'll find it to be a good source of support and information. I too was diagnosed many years ago and so little information was available back then. There's a terrific group of folks here and I think that you will find that it helps to be able to communicate with others that have RSD. Barbaralynlorraine wrote:

Hello to all,I have just signed up in my attempt to handle the fact that the RSD has returned after some years of being completely free of pain and symptoms. I was called a classic case in 1994. It only took several months of debilitating pain after a crush and fracture of my left ankle for a second doctor to diagnose RSD and then the struggle of pain as you all know was life changing plus losing the ability to walk for years. My story of recovery after years of extreme pain and disability is to me and others a miracle and I have been grateful everyday. Now I face the challenge one again. On one hand I am armed with information from my experience and know that I am not crazy. On the other hand I know very well what may be my future and I am frightened. I hope to make some contact via internet that I didn't have access to

in the 90's. Any suggestions for how to best use this group would be appreciated and is there anyway I may contribute my experience. Thank you for your time, Lyn

[Guest guest]

Welcome to the group. I hope that you'll find it to be a good source of support and information. I too was diagnosed many years ago and so little information was available back then. There's a terrific group of folks here and I think that you will find that it helps to be able to communicate with others that have RSD. Barbaralynlorraine wrote:

Hello to all,I have just signed up in my attempt to handle the fact that the RSD has returned after some years of being completely free of pain and symptoms. I was called a classic case in 1994. It only took several months of debilitating pain after a crush and fracture of my left ankle for a second doctor to diagnose RSD and then the struggle of pain as you all know was life changing plus losing the ability to walk for years. My story of recovery after years of extreme pain and disability is to me and others a miracle and I have been grateful everyday. Now I face the challenge one again. On one hand I am armed with information from my experience and know that I am not crazy. On the other hand I know very well what may be my future and I am frightened. I hope to make some contact via internet that I didn't have access to

in the 90's. Any suggestions for how to best use this group would be appreciated and is there anyway I may contribute my experience. Thank you for your time, Lyn

[Guest guest]

Welcome to the group. I hope that you'll find it to be a good source of support and information. I too was diagnosed many years ago and so little information was available back then. There's a terrific group of folks here and I think that you will find that it helps to be able to communicate with others that have RSD. Barbaralynlorraine wrote:

Hello to all,I have just signed up in my attempt to handle the fact that the RSD has returned after some years of being completely free of pain and symptoms. I was called a classic case in 1994. It only took several months of debilitating pain after a crush and fracture of my left ankle for a second doctor to diagnose RSD and then the struggle of pain as you all know was life changing plus losing the ability to walk for years. My story of recovery after years of extreme pain and disability is to me and others a miracle and I have been grateful everyday. Now I face the challenge one again. On one hand I am armed with information from my experience and know that I am not crazy. On the other hand I know very well what may be my future and I am frightened. I hope to make some contact via internet that I didn't have access to

in the 90's. Any suggestions for how to best use this group would be appreciated and is there anyway I may contribute my experience. Thank you for your time, Lyn

[Guest guest]

Hello Lyn,

I don't think that I've welcomed you yet...

Was there a new injury that has brought your RSD symptoms back? Have you seen your pain mgmt Dr, and will you be getting aggressive treatments? I see by one of your posts that you've been through the gamut of treatments, and know which works best for you.

About how to deal with it, I think that since you've been in remission already, you've got to hope and believe that you will do so again. I always think that dealing with this for "eternity" is too overwhelming. Believe in remission or a cure!

Hugs,

Jo

[Guest guest]

Hello Lyn,

I don't think that I've welcomed you yet...

Was there a new injury that has brought your RSD symptoms back? Have you seen your pain mgmt Dr, and will you be getting aggressive treatments? I see by one of your posts that you've been through the gamut of treatments, and know which works best for you.

About how to deal with it, I think that since you've been in remission already, you've got to hope and believe that you will do so again. I always think that dealing with this for "eternity" is too overwhelming. Believe in remission or a cure!

Hugs,

Jo

[Guest guest]

Lyn,

Just curious.... did anything happen that made the RSD start again..

i.e. an injury??

Carla

> Hello to all,

> I have just signed up in my attempt to handle the fact that the RSD

> has returned after some years of being completely free of pain and

> symptoms. I was called a classic case in 1994. It only took

> several months of debilitating pain after a crush and fracture of my

> left ankle for a second doctor to diagnose RSD and then the struggle

> of pain as you all know was life changing plus losing the ability to

> walk for years. My story of recovery after years of extreme pain

> and disability is to me and others a miracle and I have been

> grateful everyday. Now I face the challenge one again. On one hand

> I am armed with information from my experience and know that I am

> not crazy. On the other hand I know very well what may be my future

> and I am frightened. I hope to make some contact via internet that I

> didn't have access to in the 90's. Any suggestions for how to best

> use this group would be appreciated and is there anyway I may

> contribute my experience. Thank you for your time, Lyn

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Lyn,

Just curious.... did anything happen that made the RSD start again..

i.e. an injury??

Carla

> Hello to all,

> I have just signed up in my attempt to handle the fact that the RSD

> has returned after some years of being completely free of pain and

> symptoms. I was called a classic case in 1994. It only took

> several months of debilitating pain after a crush and fracture of my

> left ankle for a second doctor to diagnose RSD and then the struggle

> of pain as you all know was life changing plus losing the ability to

> walk for years. My story of recovery after years of extreme pain

> and disability is to me and others a miracle and I have been

> grateful everyday. Now I face the challenge one again. On one hand

> I am armed with information from my experience and know that I am

> not crazy. On the other hand I know very well what may be my future

> and I am frightened. I hope to make some contact via internet that I

> didn't have access to in the 90's. Any suggestions for how to best

> use this group would be appreciated and is there anyway I may

> contribute my experience. Thank you for your time, Lyn

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Lyn,

Just curious.... did anything happen that made the RSD start again..

i.e. an injury??

Carla

> Hello to all,

> I have just signed up in my attempt to handle the fact that the RSD

> has returned after some years of being completely free of pain and

> symptoms. I was called a classic case in 1994. It only took

> several months of debilitating pain after a crush and fracture of my

> left ankle for a second doctor to diagnose RSD and then the struggle

> of pain as you all know was life changing plus losing the ability to

> walk for years. My story of recovery after years of extreme pain

> and disability is to me and others a miracle and I have been

> grateful everyday. Now I face the challenge one again. On one hand

> I am armed with information from my experience and know that I am

> not crazy. On the other hand I know very well what may be my future

> and I am frightened. I hope to make some contact via internet that I

> didn't have access to in the 90's. Any suggestions for how to best

> use this group would be appreciated and is there anyway I may

> contribute my experience. Thank you for your time, Lyn

>

>

>

>

>

>

>

>

>

>

[Guest guest]

> Hello Lyn,

> I don't think that I've welcomed you yet...

> Was there a new injury that has brought your RSD symptoms back?

Have you

> seen your pain mgmt Dr, and will you be getting aggressive

treatments? I see

> by one of your posts that you've been through the gamut of

treatments, and

> know which works best for you.

>

> About how to deal with it, I think that since you've been in

remission

> already, you've got to hope and believe that you will do so

again. I always think

> that dealing with this for " eternity " is too overwhelming.

Believe in

> remission or a cure!

>

> Hugs,

> Jo

Hello Jo,

I am not sure but in July I started very careful exercising with a

PT and added a little more each month. I've been thinking about

getting in shape. I had been afraid to do anything too strenuous

with my foot. So I took a chance.... Recently I started to feel a

stress/strain in my arch and then it developed a pain in the outside

ankle bone for about a week. My guess is something happened to

inflame nerves in that area and then the well worn pathways of RSD

woke up, screaming the alarm.

In my inner world of the body I picture a bunch of little people

running around in every direction yelling fire in the hole! and

nobody doing anything to put it out! There was a study in the

Netherlands of 829 patients over a 8 or 10 year period that

described RSD as an exaggerated inflammatory response and that has

always stuck in my visual mind.

I am seeing my doctor this afternoon to discuss my options. I

dislike the thought of prednisone because over the long haul it can

do so much damage but I don't think thiere is anything better that

worked to knock down the inflammatory response in the past. Maybe

I'll try something else first to see if it calms down the troops

until the commander returns.

And you have similar thoughts...remission is real even after years

of what is called by some as irreversible. I'm proof. I remember

the day the switch was thrown and it just turned off. Amazing. I

had 4 fantastic painfree years after an equal amount of constant

disability.

I hope to find all your stories here in these threads. I encourage

anyone to email me if you want to share your history and story with

me. Or give me the post numbers and I'll search to read your posted

stories. Thank you so much.

[Guest guest]

> Hello Lyn,

> I don't think that I've welcomed you yet...

> Was there a new injury that has brought your RSD symptoms back?

Have you

> seen your pain mgmt Dr, and will you be getting aggressive

treatments? I see

> by one of your posts that you've been through the gamut of

treatments, and

> know which works best for you.

>

> About how to deal with it, I think that since you've been in

remission

> already, you've got to hope and believe that you will do so

again. I always think

> that dealing with this for " eternity " is too overwhelming.

Believe in

> remission or a cure!

>

> Hugs,

> Jo

Hello Jo,

I am not sure but in July I started very careful exercising with a

PT and added a little more each month. I've been thinking about

getting in shape. I had been afraid to do anything too strenuous

with my foot. So I took a chance.... Recently I started to feel a

stress/strain in my arch and then it developed a pain in the outside

ankle bone for about a week. My guess is something happened to

inflame nerves in that area and then the well worn pathways of RSD

woke up, screaming the alarm.

In my inner world of the body I picture a bunch of little people

running around in every direction yelling fire in the hole! and

nobody doing anything to put it out! There was a study in the

Netherlands of 829 patients over a 8 or 10 year period that

described RSD as an exaggerated inflammatory response and that has

always stuck in my visual mind.

I am seeing my doctor this afternoon to discuss my options. I

dislike the thought of prednisone because over the long haul it can

do so much damage but I don't think thiere is anything better that

worked to knock down the inflammatory response in the past. Maybe

I'll try something else first to see if it calms down the troops

until the commander returns.

And you have similar thoughts...remission is real even after years

of what is called by some as irreversible. I'm proof. I remember

the day the switch was thrown and it just turned off. Amazing. I

had 4 fantastic painfree years after an equal amount of constant

disability.

I hope to find all your stories here in these threads. I encourage

anyone to email me if you want to share your history and story with

me. Or give me the post numbers and I'll search to read your posted

stories. Thank you so much.

[Guest guest]

> Hello Lyn,

> I don't think that I've welcomed you yet...

> Was there a new injury that has brought your RSD symptoms back?

Have you

> seen your pain mgmt Dr, and will you be getting aggressive

treatments? I see

> by one of your posts that you've been through the gamut of

treatments, and

> know which works best for you.

>

> About how to deal with it, I think that since you've been in

remission

> already, you've got to hope and believe that you will do so

again. I always think

> that dealing with this for " eternity " is too overwhelming.

Believe in

> remission or a cure!

>

> Hugs,

> Jo

Hello Jo,

I am not sure but in July I started very careful exercising with a

PT and added a little more each month. I've been thinking about

getting in shape. I had been afraid to do anything too strenuous

with my foot. So I took a chance.... Recently I started to feel a

stress/strain in my arch and then it developed a pain in the outside

ankle bone for about a week. My guess is something happened to

inflame nerves in that area and then the well worn pathways of RSD

woke up, screaming the alarm.

In my inner world of the body I picture a bunch of little people

running around in every direction yelling fire in the hole! and

nobody doing anything to put it out! There was a study in the

Netherlands of 829 patients over a 8 or 10 year period that

described RSD as an exaggerated inflammatory response and that has

always stuck in my visual mind.

I am seeing my doctor this afternoon to discuss my options. I

dislike the thought of prednisone because over the long haul it can

do so much damage but I don't think thiere is anything better that

worked to knock down the inflammatory response in the past. Maybe

I'll try something else first to see if it calms down the troops

until the commander returns.

And you have similar thoughts...remission is real even after years

of what is called by some as irreversible. I'm proof. I remember

the day the switch was thrown and it just turned off. Amazing. I

had 4 fantastic painfree years after an equal amount of constant

disability.

I hope to find all your stories here in these threads. I encourage

anyone to email me if you want to share your history and story with

me. Or give me the post numbers and I'll search to read your posted

stories. Thank you so much.

[Guest guest]

I think you are right. I can only imagine how it would have

helped to have some kind of confirmation that I wasn't just a

neurotic as my first doctor implied when he said, " I'm not going to

be your pill pusher! " I was shocked. He was the biggest jerk.

Because he told me I was so lucky to have come in to emergency on

his shift and that he was a specialist that he had at least saved my

foot. It took me three months of his abuse to finally refuse to see

him and ask for another doctor. I am embarassed that it took me

that long to cut him loose. He had me thinking I was a baby. He

even said he was sending me to physical therapy because I " refused "

to walk on my foot. Good grief, when I look back it makes me want

to find him and punch him in the nose all over again! Have you had

continuous pain all these years? How were you diagnosed? THank you

for the welcome. Lyn

>

>

> Hello to all,

> I have just signed up in my attempt to handle the fact that the

RSD

> has returned after some years of being completely free of pain and

> symptoms. I was called a classic case in 1994. It only

took.........

>

[Guest guest]

I think you are right. I can only imagine how it would have

helped to have some kind of confirmation that I wasn't just a

neurotic as my first doctor implied when he said, " I'm not going to

be your pill pusher! " I was shocked. He was the biggest jerk.

Because he told me I was so lucky to have come in to emergency on

his shift and that he was a specialist that he had at least saved my

foot. It took me three months of his abuse to finally refuse to see

him and ask for another doctor. I am embarassed that it took me

that long to cut him loose. He had me thinking I was a baby. He

even said he was sending me to physical therapy because I " refused "

to walk on my foot. Good grief, when I look back it makes me want

to find him and punch him in the nose all over again! Have you had

continuous pain all these years? How were you diagnosed? THank you

for the welcome. Lyn

>

>

> Hello to all,

> I have just signed up in my attempt to handle the fact that the

RSD

> has returned after some years of being completely free of pain and

> symptoms. I was called a classic case in 1994. It only

took.........

>

[Guest guest]

I think you are right. I can only imagine how it would have

helped to have some kind of confirmation that I wasn't just a

neurotic as my first doctor implied when he said, " I'm not going to

be your pill pusher! " I was shocked. He was the biggest jerk.

Because he told me I was so lucky to have come in to emergency on

his shift and that he was a specialist that he had at least saved my

foot. It took me three months of his abuse to finally refuse to see

him and ask for another doctor. I am embarassed that it took me

that long to cut him loose. He had me thinking I was a baby. He

even said he was sending me to physical therapy because I " refused "

to walk on my foot. Good grief, when I look back it makes me want

to find him and punch him in the nose all over again! Have you had

continuous pain all these years? How were you diagnosed? THank you

for the welcome. Lyn

>

>

> Hello to all,

> I have just signed up in my attempt to handle the fact that the

RSD

> has returned after some years of being completely free of pain and

> symptoms. I was called a classic case in 1994. It only

took.........

>

[Guest guest]

Gees, Lyn. Things sure were different back then, but sadly they haven't gotten a heck of a lot better since then. With me, they spent over a year and a half attributing my pain and symptoms to "how severe" the injury was. There was only one doc who mentioned "dystrophic changes." a guy I went to for a second opinion before having heavy duty surgery. Looking back, I wish that I had known what that meant. I even repeated his words to the doc who was going to do the surgery and his words were "God, I hope not." Well that didn't give me much to go on. It was a long time before someone finally gave the additional RSD diagnosis and "dystrophic changes" took on meaning. I can't say that any of the docs back then were unkind to me, just pretty ignorant I guess. Still. there are so many docs out there even now who either know nothing of RSD or poo-poo the diagnosis as a catch-all garbage pail thing. Silly. I can't think of

anything else out there in the books that causes the symptoms that we have....What's their issue?

As I write this, I hope that you and everyone else has hit the hay. I stayed up to watch the first half of the Angels in America video with my neighbor not realizing that the first DVD was hours long. Weird but very poignant movie. We'll watch the other half later but start out much earlier in the evening, I hope. Just plum tired here and have an erarly doctor appointment for me and a car-doctor appointment for my car. Ugh. G'Night. Barbaralynlorraine wrote:

I think you are right. I can only imagine how it would have helped to have some kind of confirmation that I wasn't just a neurotic as my first doctor implied when he said, " I'm not going to be your pill pusher!" I was shocked. He was the biggest jerk. Because he told me I was so lucky to have come in to emergency on his shift and that he was a specialist that he had at least saved my foot. It took me three months of his abuse to finally refuse to see him and ask for another doctor. I am embarassed that it took me that long to cut him loose. He had me thinking I was a baby. He even said he was sending me to physical therapy because I "refused" to walk on my foot. Good grief, when I look back it makes me want to find him and punch him in the nose all over again! Have you had continuous pain all these years? How were you diagnosed?

THank you for the welcome. Lyn> > > Hello to all,> I have just signed up in my attempt to handle the fact that the RSD > has returned after some years of being completely free of pain and > symptoms. I was called a classic case in 1994. It only took......... >

[Guest guest]

Gees, Lyn. Things sure were different back then, but sadly they haven't gotten a heck of a lot better since then. With me, they spent over a year and a half attributing my pain and symptoms to "how severe" the injury was. There was only one doc who mentioned "dystrophic changes." a guy I went to for a second opinion before having heavy duty surgery. Looking back, I wish that I had known what that meant. I even repeated his words to the doc who was going to do the surgery and his words were "God, I hope not." Well that didn't give me much to go on. It was a long time before someone finally gave the additional RSD diagnosis and "dystrophic changes" took on meaning. I can't say that any of the docs back then were unkind to me, just pretty ignorant I guess. Still. there are so many docs out there even now who either know nothing of RSD or poo-poo the diagnosis as a catch-all garbage pail thing. Silly. I can't think of

anything else out there in the books that causes the symptoms that we have....What's their issue?

As I write this, I hope that you and everyone else has hit the hay. I stayed up to watch the first half of the Angels in America video with my neighbor not realizing that the first DVD was hours long. Weird but very poignant movie. We'll watch the other half later but start out much earlier in the evening, I hope. Just plum tired here and have an erarly doctor appointment for me and a car-doctor appointment for my car. Ugh. G'Night. Barbaralynlorraine wrote:

I think you are right. I can only imagine how it would have helped to have some kind of confirmation that I wasn't just a neurotic as my first doctor implied when he said, " I'm not going to be your pill pusher!" I was shocked. He was the biggest jerk. Because he told me I was so lucky to have come in to emergency on his shift and that he was a specialist that he had at least saved my foot. It took me three months of his abuse to finally refuse to see him and ask for another doctor. I am embarassed that it took me that long to cut him loose. He had me thinking I was a baby. He even said he was sending me to physical therapy because I "refused" to walk on my foot. Good grief, when I look back it makes me want to find him and punch him in the nose all over again! Have you had continuous pain all these years? How were you diagnosed?

THank you for the welcome. Lyn> > > Hello to all,> I have just signed up in my attempt to handle the fact that the RSD > has returned after some years of being completely free of pain and > symptoms. I was called a classic case in 1994. It only took......... >

[Guest guest]

Gees, Lyn. Things sure were different back then, but sadly they haven't gotten a heck of a lot better since then. With me, they spent over a year and a half attributing my pain and symptoms to "how severe" the injury was. There was only one doc who mentioned "dystrophic changes." a guy I went to for a second opinion before having heavy duty surgery. Looking back, I wish that I had known what that meant. I even repeated his words to the doc who was going to do the surgery and his words were "God, I hope not." Well that didn't give me much to go on. It was a long time before someone finally gave the additional RSD diagnosis and "dystrophic changes" took on meaning. I can't say that any of the docs back then were unkind to me, just pretty ignorant I guess. Still. there are so many docs out there even now who either know nothing of RSD or poo-poo the diagnosis as a catch-all garbage pail thing. Silly. I can't think of

anything else out there in the books that causes the symptoms that we have....What's their issue?

As I write this, I hope that you and everyone else has hit the hay. I stayed up to watch the first half of the Angels in America video with my neighbor not realizing that the first DVD was hours long. Weird but very poignant movie. We'll watch the other half later but start out much earlier in the evening, I hope. Just plum tired here and have an erarly doctor appointment for me and a car-doctor appointment for my car. Ugh. G'Night. Barbaralynlorraine wrote:

I think you are right. I can only imagine how it would have helped to have some kind of confirmation that I wasn't just a neurotic as my first doctor implied when he said, " I'm not going to be your pill pusher!" I was shocked. He was the biggest jerk. Because he told me I was so lucky to have come in to emergency on his shift and that he was a specialist that he had at least saved my foot. It took me three months of his abuse to finally refuse to see him and ask for another doctor. I am embarassed that it took me that long to cut him loose. He had me thinking I was a baby. He even said he was sending me to physical therapy because I "refused" to walk on my foot. Good grief, when I look back it makes me want to find him and punch him in the nose all over again! Have you had continuous pain all these years? How were you diagnosed?

THank you for the welcome. Lyn> > > Hello to all,> I have just signed up in my attempt to handle the fact that the RSD > has returned after some years of being completely free of pain and > symptoms. I was called a classic case in 1994. It only took......... >

[Guest guest]

Lyn - First off, I don't think that I've ever seen a rule about how long a post can be. Hmmm, not even sure who would win the award for that one. Not to worry, if it's too long I don't think anyone would say anything at all (they just might read the whole thing ).

Let me see if I can try for the record here !! Re my original injury....I shattered my left elbow (7+ places) 13 years ago by falling over a baby gate. I propelled myself down an entire flight of stairs without hitting narry a one until I hit the landing. Being a skier, I instinctively did not put my had out to brace my fall and, instead, went into a tuck position. Unfortunately, I ended up taking the full brunt of the fall on my elbow. Not wanting to have some doc just say that I had sprained it, I went to work, did 4 sessions back to back and then starting vomiting as the pain set in. Saw the doc who was substituting for my own who, in his zeroing in on the ulnar break near the elbow, totally missed that the radial head and neck were shattered. He called the ortho who said not to cast it, have me start physical therapy the next day (!!!) and that he'd see me a week later.

At that point, my arm was in full contracture and it was too late to do the surgery that was required which would have involved removing a good section of the bone and putting in a permanent spacer. We opted to see how it would heal on its own and kept the PT going. Within 6/8 weeks it was clear that many of the pieces were not going to be team players. I saw another doc for a second opinion who agreed that surg was needed and observed "dystrophic changes," which of course meant nothing to me. Post-op (removed radial head and part of the neck) I had major pain and continued to have major pain for a year and a half. Looking back, I had all of the signs of RSD but the docs attributed all of the symptoms to how severe the break, tendon/muscle/nerve damage had been. Finally my GP got fed up with the other docs and sent me to pain management. Blocks and meds were aggressively started but, unfortunately, not soon enough.

I stopped going to pain mgmt. after getting a spinal fluid leak from my nose that resulted in bacterial meningitis and subsequent brain surgery. Sick of docs and decided to just get by on my own. ALthough not conclusive, no proof, it's believed that the hole in my skull was likely due to RSD (long story). Also had major female issues and subsequent also, although no-proof not conclusive, have also been attributed to RSD. Also have RSD in left foot and halfway up the calf (resulted in my having to have part of my achilles tendon removed "length-wise" after it became necrotic).....but not nearly as severe as in my arm and hand. All of this stuff has been "same side."

What brought me back into the pain management clinic was that about two years ago I started having an gradual increase in pain and symptoms in my left hand and arm. For a time, I chalked it up to the RSD and tried to breathe through it but then slowly realized that it was a bit "different," quite intense than the rest of my arm, and localized. Opened my mouth and was quickly sent for EMG/NCV studies that confirmed ulnar nerve entrapment at the elbow in several places where the bones had essentially "collapsed" because they had been unable to put in a spacer. The surgeon poo-pooed any prophylactic blocks before the surgery and convinced me that the RSD wouldn't worsen. Wrong. Two days post-op I was rehospitalized with major flare Dr. Bozo attributed to the extensive surgery (turns out ulnar nerve was trapped in three places and all but destroyed). I weathered through the pain again for six months before my GP again went

ballistic and sent me back to the pain clinic in July 2003. CRPS I was now also CRPS II. Blocks, meds, two SCS (not successful for me...long story) and now due to unavoidable circumstances (main doc involved in my care at the clinic had to leave for emergency 3 month medical leave for himself) my treatment plan has been thrown up in the air.

I've managed until three weeks ago to work full-time, consult to area fire departments, and write the first and second draft of a a book. Due to having to at least temporarily go the narcotics route (fought this for the whole 13 years), I am now on what will hopefully be just a temporary leave of absence from work until they can get be stabilized on the meds. It also got complicated because we also learned at the same time that I have a sister syndrome to RSD, called SAME, that involves mysositis and precludes my taking man of the meds that I had been on. So I'm simlutaneously going quickly off numerous meds while also trying to get used to several new pretty heavy duty meds. Body is in roulette mode and I've been told that I can't drive (pfffft) due to vision issues, absence of grip strength in bad hand/arm, etc. I'm scheduled for a driving assessment for this coming Wednesday (say a prayer) at a rehab here and deperately

hoping that I'll get the go ahead to start driving again. WIthout that okay, I will have to stop working. If all of that goes well, it will only be a matter of me getting stabilized on the meds so that I can stay awake and alert enough to be able to return to work. It also looks like I will be part of clinical study involving thalidomide that will commence probably in January. Not a sure thing in terms of it being successful, but it is thought that it may help push folks into remission or at least a reduction in symptoms.

Okay......If you're still reading...This is all probably a heck of a lot more than what you wanted or needed to know but I figured maybe I could win the award for the longest post. (Can I, JoAnn? Please? PLEASE?) If your'e still reading this.....I'm not pregnant and I have a tiny little freckle on the side of my nose. I have a cat too and I live on a llama farm. That's my life. So, Lyn.....a challenge.....Can you write a longer one? Barblynlorraine wrote:

Hello Barbara, May I ask what injury and surgery you had and How long ago? I appreciate your sharing....... About one year after my remission I was asked by a local instructor to speak to his massage therapy class at the local junior college. It was an experience to get up before 20 women and try to describe what RSD was like and how to recognize the symptoms. Later after the class I had to cry. IAre there any rules about how long our posts can be! Lyn

[Guest guest]

Lyn - First off, I don't think that I've ever seen a rule about how long a post can be. Hmmm, not even sure who would win the award for that one. Not to worry, if it's too long I don't think anyone would say anything at all (they just might read the whole thing ).

Let me see if I can try for the record here !! Re my original injury....I shattered my left elbow (7+ places) 13 years ago by falling over a baby gate. I propelled myself down an entire flight of stairs without hitting narry a one until I hit the landing. Being a skier, I instinctively did not put my had out to brace my fall and, instead, went into a tuck position. Unfortunately, I ended up taking the full brunt of the fall on my elbow. Not wanting to have some doc just say that I had sprained it, I went to work, did 4 sessions back to back and then starting vomiting as the pain set in. Saw the doc who was substituting for my own who, in his zeroing in on the ulnar break near the elbow, totally missed that the radial head and neck were shattered. He called the ortho who said not to cast it, have me start physical therapy the next day (!!!) and that he'd see me a week later.

At that point, my arm was in full contracture and it was too late to do the surgery that was required which would have involved removing a good section of the bone and putting in a permanent spacer. We opted to see how it would heal on its own and kept the PT going. Within 6/8 weeks it was clear that many of the pieces were not going to be team players. I saw another doc for a second opinion who agreed that surg was needed and observed "dystrophic changes," which of course meant nothing to me. Post-op (removed radial head and part of the neck) I had major pain and continued to have major pain for a year and a half. Looking back, I had all of the signs of RSD but the docs attributed all of the symptoms to how severe the break, tendon/muscle/nerve damage had been. Finally my GP got fed up with the other docs and sent me to pain management. Blocks and meds were aggressively started but, unfortunately, not soon enough.

I stopped going to pain mgmt. after getting a spinal fluid leak from my nose that resulted in bacterial meningitis and subsequent brain surgery. Sick of docs and decided to just get by on my own. ALthough not conclusive, no proof, it's believed that the hole in my skull was likely due to RSD (long story). Also had major female issues and subsequent also, although no-proof not conclusive, have also been attributed to RSD. Also have RSD in left foot and halfway up the calf (resulted in my having to have part of my achilles tendon removed "length-wise" after it became necrotic).....but not nearly as severe as in my arm and hand. All of this stuff has been "same side."

What brought me back into the pain management clinic was that about two years ago I started having an gradual increase in pain and symptoms in my left hand and arm. For a time, I chalked it up to the RSD and tried to breathe through it but then slowly realized that it was a bit "different," quite intense than the rest of my arm, and localized. Opened my mouth and was quickly sent for EMG/NCV studies that confirmed ulnar nerve entrapment at the elbow in several places where the bones had essentially "collapsed" because they had been unable to put in a spacer. The surgeon poo-pooed any prophylactic blocks before the surgery and convinced me that the RSD wouldn't worsen. Wrong. Two days post-op I was rehospitalized with major flare Dr. Bozo attributed to the extensive surgery (turns out ulnar nerve was trapped in three places and all but destroyed). I weathered through the pain again for six months before my GP again went

ballistic and sent me back to the pain clinic in July 2003. CRPS I was now also CRPS II. Blocks, meds, two SCS (not successful for me...long story) and now due to unavoidable circumstances (main doc involved in my care at the clinic had to leave for emergency 3 month medical leave for himself) my treatment plan has been thrown up in the air.

I've managed until three weeks ago to work full-time, consult to area fire departments, and write the first and second draft of a a book. Due to having to at least temporarily go the narcotics route (fought this for the whole 13 years), I am now on what will hopefully be just a temporary leave of absence from work until they can get be stabilized on the meds. It also got complicated because we also learned at the same time that I have a sister syndrome to RSD, called SAME, that involves mysositis and precludes my taking man of the meds that I had been on. So I'm simlutaneously going quickly off numerous meds while also trying to get used to several new pretty heavy duty meds. Body is in roulette mode and I've been told that I can't drive (pfffft) due to vision issues, absence of grip strength in bad hand/arm, etc. I'm scheduled for a driving assessment for this coming Wednesday (say a prayer) at a rehab here and deperately

hoping that I'll get the go ahead to start driving again. WIthout that okay, I will have to stop working. If all of that goes well, it will only be a matter of me getting stabilized on the meds so that I can stay awake and alert enough to be able to return to work. It also looks like I will be part of clinical study involving thalidomide that will commence probably in January. Not a sure thing in terms of it being successful, but it is thought that it may help push folks into remission or at least a reduction in symptoms.

Okay......If you're still reading...This is all probably a heck of a lot more than what you wanted or needed to know but I figured maybe I could win the award for the longest post. (Can I, JoAnn? Please? PLEASE?) If your'e still reading this.....I'm not pregnant and I have a tiny little freckle on the side of my nose. I have a cat too and I live on a llama farm. That's my life. So, Lyn.....a challenge.....Can you write a longer one? Barblynlorraine wrote:

Hello Barbara, May I ask what injury and surgery you had and How long ago? I appreciate your sharing....... About one year after my remission I was asked by a local instructor to speak to his massage therapy class at the local junior college. It was an experience to get up before 20 women and try to describe what RSD was like and how to recognize the symptoms. Later after the class I had to cry. IAre there any rules about how long our posts can be! Lyn

[Guest guest]

In a message dated 1/11/2006 1:53:46 P.M. Eastern Standard Time,

k123@... writes:

I wake up, go make coffee, go back to bed for 10 minutes, then go get the

first cup, take it back to bed, then go get second cup and stay up.

Hi Kitty,

You need a programmable coffee maker, then you would not have to get up,

then go back to bed. gave me a programmable one for Christmas. I program

it to come on around 8:15 AM. If I get up earlier, I can always switch it to

on and have coffee in 5 minutes.

hugs

Eunice

[Guest guest]

In a message dated 1/11/2006 1:53:46 P.M. Eastern Standard Time,

k123@... writes:

I wake up, go make coffee, go back to bed for 10 minutes, then go get the

first cup, take it back to bed, then go get second cup and stay up.

Hi Kitty,

You need a programmable coffee maker, then you would not have to get up,

then go back to bed. gave me a programmable one for Christmas. I program

it to come on around 8:15 AM. If I get up earlier, I can always switch it to

on and have coffee in 5 minutes.

hugs

Eunice