Re: I am new to this group and feel very much alone

[Guest guest]

Thanks for all the kind words.

I live Galt, California. It is in between Sacramento & Stockton.

My doctors are all at Kaiser, which can be both good and bad. My

biggest frustration is the financial part. My employer, the big X,

refusing to accept my carpal tunnel as work comp really hurts. I

worked there for 20 years and feel like I was thrown out with the

garbage. I wonder each month if my disability check will come. Next

July, the policy runs out but another kicks in. I am just tired of

having to prove myself all the time. I have accepted this condition

as a part of my life. That has actully helped. Instead of running

around trying to find the magic cure, I find it easier to treat my

RSD as a 2-year old. I discipline it when it gets out of control

and relish it when it behaves. I was offered the blocks after I had

been diagnosed 8 months. But my doctors don't agree on this course

of treatment. Some say that it is too late and some say give it a

try. I am afraid of the potential side effects, spinal headaches &

paraylsis. With my luck the last 2 years, I would rather live with

what I have now and can handle, then risk it getting worse. I also

have seen conflicting opinions of the blocks via the internet. My

doctors also can't agree if I even have RSD. I don't have abnormal

hair/nail growth, leisions, color changes or other symptoms I have

read about. What I do have is the severe burning, stabbing pain,

electrical shock pain, muscle spamas, arm feels cold, almost frozen

at times, very poor sleep and fatigue. My poor concentration

bothers me alot. I use to be so on top of everything. It also

worries my husband the most. I have also had vision problems where

my vision all of a sudden blurs and then slowly clears up. That is

scary. Of course, the concentratin and vision problems are in my

head, nothing to do with the RSD - that is what the doctors say when

I ask. As for working with the pain, I can tolerate it with meds

but I can have some really bad days. Who is going to let me rest

when I want or put up with calling in sick alot? Legally I am not

suppose to be even driving with the amount of meds I take. What

happens if I get in an accident? My lack of concentration is also a

big problem. I am currently seeing a therapist and she believes

that I could not handle the job stress. I am barely handling my

daily life stress. She encourages me to concentrate on the postive

things in my life - friends and family. I joined a Red Hat Soceity

and we do something once a month. I actually have a great social

life - mostly visiting with friends and I belong to an RV club. We

go at least once a month and I look forward to that. Being social

keeps me off the couch and keeps me from fallng into a further

depression. My friends make sure I don't overdue and make me rest.

They take better care of me then I do myself. Since I can't control

the doctors, the lawyers, the disability people and social security,

I control the good things. This has actually brought my husband and

me closer. His cancer and my RSD makes us lean on each other. We

have both come to appreciate the other because we both know that we

need each other. Reading all this makes me think, my life ain't so

bad and it really isn't. I just don't like the lack of control I

have in my life. Waiting for doctors, lawyers and disability people

to decide my whole future sucks.

> Gale, this is JoAnn, I sign with s Momma under name as

is my

> daughter and she was diagnosed with RSD 8 years ago and was in

very bad

> shape for long time. She is still not very well. But I have the

Fibro so

> severe that it alone makes me permantly disabled, then thought

what the

> heck, and 2 years ago was told have rsd now in right foot/ankle

and try with

> blocks to keep it from moving up which does enjoy making my leg

numb to see

> how scared I get and must admit I do get scared when that happens.

> I do not get on much anymore as where computer is hurts to

much to be

> on anymore so very frustrated as want to know how all are doing

and be part

> of the conversations. It is a big plus of getting my mind off

and

> myself.

> You are one of the rare ones you know having family and plenty

of

> friends all this time. Alot loose the majority of their friends

with not

> being able to get out with them, and over time the calls slow down

and the

> asking if want to get together stops, so you are doing great

having that

> large a support system and very happy for you, know this must be

such a

> grand blessing you have each day.

> Where do you live Gale? Always like to know, seems most on

here that

> write anyway, are in upper East Coast, so do we add you to that

group also?

> Fixing computers is a career would think you had to really

keep up with

> new changes made all the time, or did the components stay

basically the

> same? Have you had the blocks Gale, I do not know if you wrote

about that

> as at this time have 560 emails and wish the heck would take the

time to get

> them deleted.

> My home email is

> 2xhawks@s...

> in case you would care to write me direct. Those I catch fairly

quick and

> if you have Fibro, heart troubles, Chronic Fatigue along with rsd,

can help

> you with those as the Fibro had now over 14 years. Hope you do

not have it.

> Last thing in my normal novels, the forgetting things is so

normal. Do

> not know any on here that do not find they are forgetful. Some is

the

> disease, some is meds on. So you are very normal in this, don't

kick

> yourself about it, it just is part of all your going through.

Sorry my new

> friend your having to experience this, but am thankful you found

this group

> as will have great support from those who understand, and that way

not

> having to try and explain the why's etc to family and friends.

> Please take care and hope your day goes well.

> JoAnn

> s Momma

> I am new to this group and feel very

much alone

>

>

> >

> >

> >

> > I am sitting here at 4 AM reading some of these posts and

crying. I

> > have felt so alone. I haved been living this nightmare for over

2

> > yrs. I was diagnosed with RSDS 6 months after carpal tunnel

> > surgery. My symptoms appeared about a month after the surgery

and I

> > spent the next 5 months going from doc to doc trying to find out

> > what was wrong with me. One doc got so frustrated with me that

he

> > tried to make me feel like this was all in my head. But it

isn't, I

> > hurt! I am currently on disability, a policy I bought thru my

> > benefits at work. My carpal tunnel was work related. I fixed

> > office equipment for 20 years using various hand tools. Now my

> > employer is fighting the work comp. Their doctors are saying

that I

> > never had carpal tunnel in the first place. Apparently I had my

> > wrist sliced open for the hell of it. My docs are the ones who

> > diagnosed my carpal tunnel and recommended surgery. My life has

> > been hell since then. I don't blame the doc who did the surgery

for

> > this. I understand that RSDS is just something that happened. I

am a

> > little upset that it took them 6 months to figure it out and yet

> > they are still not agreeing on it. I have concentration

problems,

> > which the docs say it not RSDS yet I read from these posts that

it

> > is common among the people here. I don't sleep, can't fall

asleep

> > sometimes, or wake up all the time. I manage my pain with

Vicodin,

> > it helps some but it never goes completely away. I have constant

> > severe burning, electrical jolts, stabbing pain and spasms. I

find

> > that I mentally cut my right arm off and set it aside. I have

tried

> > various other meds but Vicodin seems to work the best. I have

taken

> > behavioral classes which have taught relaxation, physical therapy

> > and coping skills. That has really helped. I see a therapist

once a

> > month, just to vent. I am fighting to keep my disability and am

> > also trying to get SS. I have lost my job and don't see how I

can

> > even work at all. I have a 10lb weight restriction and limited

use

> > of my right arm. I am right hand dominate, so that makes it real

> > tuff. I get tired very easy. If I have a decent day, then I

overdo

> > it and then down for a couple of days. My husband is very

> > supportive but he is worried about the monies. We don't know

month

> > to month if I will get a check. During all of this my husband

had

> > surgery for prostate cancer and retired. My step-son was

diagnosed

> > bi-polar. My blood pressure is high and my stress is right up

there

> > also. I know that I am rambling, but I feel like I am wearing

out

> > my friends and family with this and really need to communicate

with

> > people who know what I am going thru. People look at me, I don't

> > have missing limbs or any obvious problem. How can I be disabled?

> > People don't understand what they can't see and they don't know

how

> > much I hurt, both physically and emotionally. I am so tired of

> > this. I am stuck in the middle of the doctors and lawyers.I keep

> > thinking I should go out and find a job. But who is going to

give me

> > a job where I can work when I want and not get upset if I am too

> > tired and call in sick? I can't go back to my old job and I don't

> > have a college degree to get something else. What I would like to

> > do, I am not able to do. I would like to do something with

computers

> > but even trying this post is causing a flare-up in my arm. My

lack

> > of concentration is a real big problem. I leave the sotve and

oven

> > on. I am not comfortable driving somewhere I haven't been

before. I

> > tell my husband right when I mean left. I can't remember what I

did

> > yesterday. I use to have an excellent memory for numbers, no

more.

> > I got a PDA just to keep phone numbers, appointments and shopping

> > lists. If I don't write it down, I will never remember it. My

life

> > is a mess. The one good thing is that I have many good friends.

I

> > can count on them for anything. They have been there for both my

> > husband and myself. I know I am not alone, but it feels like it

> > when they don't really know what it is like to walk in my shoes.

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Thanks for all the kind words.

I live Galt, California. It is in between Sacramento & Stockton.

My doctors are all at Kaiser, which can be both good and bad. My

biggest frustration is the financial part. My employer, the big X,

refusing to accept my carpal tunnel as work comp really hurts. I

worked there for 20 years and feel like I was thrown out with the

garbage. I wonder each month if my disability check will come. Next

July, the policy runs out but another kicks in. I am just tired of

having to prove myself all the time. I have accepted this condition

as a part of my life. That has actully helped. Instead of running

around trying to find the magic cure, I find it easier to treat my

RSD as a 2-year old. I discipline it when it gets out of control

and relish it when it behaves. I was offered the blocks after I had

been diagnosed 8 months. But my doctors don't agree on this course

of treatment. Some say that it is too late and some say give it a

try. I am afraid of the potential side effects, spinal headaches &

paraylsis. With my luck the last 2 years, I would rather live with

what I have now and can handle, then risk it getting worse. I also

have seen conflicting opinions of the blocks via the internet. My

doctors also can't agree if I even have RSD. I don't have abnormal

hair/nail growth, leisions, color changes or other symptoms I have

read about. What I do have is the severe burning, stabbing pain,

electrical shock pain, muscle spamas, arm feels cold, almost frozen

at times, very poor sleep and fatigue. My poor concentration

bothers me alot. I use to be so on top of everything. It also

worries my husband the most. I have also had vision problems where

my vision all of a sudden blurs and then slowly clears up. That is

scary. Of course, the concentratin and vision problems are in my

head, nothing to do with the RSD - that is what the doctors say when

I ask. As for working with the pain, I can tolerate it with meds

but I can have some really bad days. Who is going to let me rest

when I want or put up with calling in sick alot? Legally I am not

suppose to be even driving with the amount of meds I take. What

happens if I get in an accident? My lack of concentration is also a

big problem. I am currently seeing a therapist and she believes

that I could not handle the job stress. I am barely handling my

daily life stress. She encourages me to concentrate on the postive

things in my life - friends and family. I joined a Red Hat Soceity

and we do something once a month. I actually have a great social

life - mostly visiting with friends and I belong to an RV club. We

go at least once a month and I look forward to that. Being social

keeps me off the couch and keeps me from fallng into a further

depression. My friends make sure I don't overdue and make me rest.

They take better care of me then I do myself. Since I can't control

the doctors, the lawyers, the disability people and social security,

I control the good things. This has actually brought my husband and

me closer. His cancer and my RSD makes us lean on each other. We

have both come to appreciate the other because we both know that we

need each other. Reading all this makes me think, my life ain't so

bad and it really isn't. I just don't like the lack of control I

have in my life. Waiting for doctors, lawyers and disability people

to decide my whole future sucks.

> Gale, this is JoAnn, I sign with s Momma under name as

is my

> daughter and she was diagnosed with RSD 8 years ago and was in

very bad

> shape for long time. She is still not very well. But I have the

Fibro so

> severe that it alone makes me permantly disabled, then thought

what the

> heck, and 2 years ago was told have rsd now in right foot/ankle

and try with

> blocks to keep it from moving up which does enjoy making my leg

numb to see

> how scared I get and must admit I do get scared when that happens.

> I do not get on much anymore as where computer is hurts to

much to be

> on anymore so very frustrated as want to know how all are doing

and be part

> of the conversations. It is a big plus of getting my mind off

and

> myself.

> You are one of the rare ones you know having family and plenty

of

> friends all this time. Alot loose the majority of their friends

with not

> being able to get out with them, and over time the calls slow down

and the

> asking if want to get together stops, so you are doing great

having that

> large a support system and very happy for you, know this must be

such a

> grand blessing you have each day.

> Where do you live Gale? Always like to know, seems most on

here that

> write anyway, are in upper East Coast, so do we add you to that

group also?

> Fixing computers is a career would think you had to really

keep up with

> new changes made all the time, or did the components stay

basically the

> same? Have you had the blocks Gale, I do not know if you wrote

about that

> as at this time have 560 emails and wish the heck would take the

time to get

> them deleted.

> My home email is

> 2xhawks@s...

> in case you would care to write me direct. Those I catch fairly

quick and

> if you have Fibro, heart troubles, Chronic Fatigue along with rsd,

can help

> you with those as the Fibro had now over 14 years. Hope you do

not have it.

> Last thing in my normal novels, the forgetting things is so

normal. Do

> not know any on here that do not find they are forgetful. Some is

the

> disease, some is meds on. So you are very normal in this, don't

kick

> yourself about it, it just is part of all your going through.

Sorry my new

> friend your having to experience this, but am thankful you found

this group

> as will have great support from those who understand, and that way

not

> having to try and explain the why's etc to family and friends.

> Please take care and hope your day goes well.

> JoAnn

> s Momma

> I am new to this group and feel very

much alone

>

>

> >

> >

> >

> > I am sitting here at 4 AM reading some of these posts and

crying. I

> > have felt so alone. I haved been living this nightmare for over

2

> > yrs. I was diagnosed with RSDS 6 months after carpal tunnel

> > surgery. My symptoms appeared about a month after the surgery

and I

> > spent the next 5 months going from doc to doc trying to find out

> > what was wrong with me. One doc got so frustrated with me that

he

> > tried to make me feel like this was all in my head. But it

isn't, I

> > hurt! I am currently on disability, a policy I bought thru my

> > benefits at work. My carpal tunnel was work related. I fixed

> > office equipment for 20 years using various hand tools. Now my

> > employer is fighting the work comp. Their doctors are saying

that I

> > never had carpal tunnel in the first place. Apparently I had my

> > wrist sliced open for the hell of it. My docs are the ones who

> > diagnosed my carpal tunnel and recommended surgery. My life has

> > been hell since then. I don't blame the doc who did the surgery

for

> > this. I understand that RSDS is just something that happened. I

am a

> > little upset that it took them 6 months to figure it out and yet

> > they are still not agreeing on it. I have concentration

problems,

> > which the docs say it not RSDS yet I read from these posts that

it

> > is common among the people here. I don't sleep, can't fall

asleep

> > sometimes, or wake up all the time. I manage my pain with

Vicodin,

> > it helps some but it never goes completely away. I have constant

> > severe burning, electrical jolts, stabbing pain and spasms. I

find

> > that I mentally cut my right arm off and set it aside. I have

tried

> > various other meds but Vicodin seems to work the best. I have

taken

> > behavioral classes which have taught relaxation, physical therapy

> > and coping skills. That has really helped. I see a therapist

once a

> > month, just to vent. I am fighting to keep my disability and am

> > also trying to get SS. I have lost my job and don't see how I

can

> > even work at all. I have a 10lb weight restriction and limited

use

> > of my right arm. I am right hand dominate, so that makes it real

> > tuff. I get tired very easy. If I have a decent day, then I

overdo

> > it and then down for a couple of days. My husband is very

> > supportive but he is worried about the monies. We don't know

month

> > to month if I will get a check. During all of this my husband

had

> > surgery for prostate cancer and retired. My step-son was

diagnosed

> > bi-polar. My blood pressure is high and my stress is right up

there

> > also. I know that I am rambling, but I feel like I am wearing

out

> > my friends and family with this and really need to communicate

with

> > people who know what I am going thru. People look at me, I don't

> > have missing limbs or any obvious problem. How can I be disabled?

> > People don't understand what they can't see and they don't know

how

> > much I hurt, both physically and emotionally. I am so tired of

> > this. I am stuck in the middle of the doctors and lawyers.I keep

> > thinking I should go out and find a job. But who is going to

give me

> > a job where I can work when I want and not get upset if I am too

> > tired and call in sick? I can't go back to my old job and I don't

> > have a college degree to get something else. What I would like to

> > do, I am not able to do. I would like to do something with

computers

> > but even trying this post is causing a flare-up in my arm. My

lack

> > of concentration is a real big problem. I leave the sotve and

oven

> > on. I am not comfortable driving somewhere I haven't been

before. I

> > tell my husband right when I mean left. I can't remember what I

did

> > yesterday. I use to have an excellent memory for numbers, no

more.

> > I got a PDA just to keep phone numbers, appointments and shopping

> > lists. If I don't write it down, I will never remember it. My

life

> > is a mess. The one good thing is that I have many good friends.

I

> > can count on them for anything. They have been there for both my

> > husband and myself. I know I am not alone, but it feels like it

> > when they don't really know what it is like to walk in my shoes.

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Gale,

My family is from the Bay Area. I now live in Central Oregon. I can

relate to your fears about the various methods used to treat RSD and

that you don't want to make it any worse than it is. That is

unthinkable. You sound like you have a good handle on your support

system and I can't think of anything more important than that. Now

if you could find better medical support that would be a big plus.

Do they have a RSD specialist at ?

Glad you found this site it can be very helpful to you.

Lyn

" galeweb " <galeweb@d...> wrote:

>

>

> Thanks for all the kind words.

>

> I live Galt, California. It is in between Sacramento & Stockton.

I have accepted this condition

> as a part of my life. That has actully helped. Instead of

running

> around trying to find the magic cure, I find it easier to treat my

> RSD as a 2-year old. I discipline it when it gets out of control

> and relish it when it behaves. I was offered the blocks after I

had

> been diagnosed 8 months. But my doctors don't agree on this

course

> of treatment. Some say that it is too late and some say give it a

> try. I am afraid of the potential side effects, spinal headaches

&

> paraylsis. With my luck the last 2 years, I would rather live

with what I have now and can handle, then risk it getting worse. I

also have seen conflicting opinions of the blocks via the

internet. My

doctors also can't agree if I even have RSD. I don't have abnormal

> hair/nail growth, leisions, color changes or other symptoms I have

> read about. What I do have is the severe burning, stabbing pain,

> electrical shock pain, muscle spamas, arm feels cold, almost

frozen

> at times, very poor sleep and fatigue. > > >

> > >

> > >

> > >

> > >

> > >