Re: [CRPS]rsd

[Guest guest]

Hi Tracey,

Your friend will be in my prayers. Let me know how she makes out.

It is so hard so see someone we love die. If you need to talk just e-mail me.

I am sending you a 'snail-mail.'

Hope you make chat tomorrow night, along with everyone else.

Tell your friend to come.

Hugs,

Deb

[Guest guest]

In a message dated 3/3/00 8:14:36 PM Eastern Standard Time,

tnhkrieg@... writes:

<< Who's Dave???? >>

Hi Guys,

Tracey,

Dave is monkeynut, Tiny Tashas fiance. His intro. is in the 3/2/posts.

Felice,

I am wishing I did go to chat tonight. Lol you guys were having fun huh?

Anyway the chat is fun, and WE WILL DO IT. Hopefully we will try tomorrow

okay.

The people who covered chat for me thanks even if business was slow.lol

I have had quite a few people ask me about my lidocaine treatments.

Well, I think it is like anything with c.r.p.s. in that what works for one

may not work for the other. I happened to be receptive to the first lidocaine

IV I received so that made me a candidate for the pill form. In order to

maintain that cycle that is broken by the lidocaine pill form, you have to go

for a booster IV. Some people don't go for a booster, they maintain the cycle

on the pill form alone.

I heard a story of a man who was in such an episode while in the hospital,

they did not know what else to do for the poor man. So the Doctor suggested

milligrams of valium to be put in his IV. That broke his pain cycle to where

mine is, maintaining and tolerable with medication.

My episodes are virtually gone. I believe the lidocaine is helping me, but

that is just me. It is not, by any stretch of the imagination a'cure.'

Have a good night sleep all?

Hugs,

Deb

***********************

Look before you leap

***********************

[Guest guest]

Deb,

Think you sent this to the wrong person.

Hugs, Tracey

Re: rsd

> From: debgena@...

>

> Hi Tracey,

> Your friend will be in my prayers. Let me know how she makes out.

> It is so hard so see someone we love die. If you need to talk just e-mail

me.

>

> I am sending you a 'snail-mail.'

> Hope you make chat tomorrow night, along with everyone else.

> Tell your friend to come.

> Hugs,

> Deb

>

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

> DON'T HATE YOUR RATE!

> Get a NextCard Visa, in 30 seconds! Get rates as low as

> 0.0% Intro or 9.9% Fixed APR and no hidden fees.

> Apply NOW!

> http://click./1/2120/0/_/706883/_/952057066/

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

>

>

[Guest guest]

Deb,

Rereading through the posts? Who's Dave???? Herb is asking me the same

question?? I think this message might have been meant for Tasha, not me.

Maybe I'm wrong. Let me know?

Hugs, Tracey

Re: rsd

> From: debgena@...

>

> Hi Tracey,

> Your friend will be in my prayers. Let me know how she makes out.

> It is so hard so see someone we love die. If you need to talk just e-mail

me.

>

> I am sending you a 'snail-mail.'

> Hope you make chat tomorrow night, along with everyone else.

> Tell your friend to come.

> Hugs,

> Deb

>

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

> DON'T HATE YOUR RATE!

> Get a NextCard Visa, in 30 seconds! Get rates as low as

> 0.0% Intro or 9.9% Fixed APR and no hidden fees.

> Apply NOW!

> http://click./1/2120/0/_/706883/_/952057066/

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

>

>

[Guest guest]

Deb,

I asked my new doctor about lidocaine. He said that when I get the morphine

pump they can add lidocaine into it.

Felice

[Guest guest]

In a message dated 3/4/00 9:17:40 AM Eastern Standard Time, felicet867@...

writes:

<< I asked my new doctor about lidocaine. He said that when I get the

morphine

pump they can add lidocaine into it.

Felice >>

Hi Felice,

I was wondering if you might want to try the lidocaine before the pump.

Your Doctor did not suggest this, ask him.

It is so much less invasive and the lidocaine may be just the ticket to stop

the cycle.

Hugs,

Deb

[Guest guest]

In a message dated 3/16/00 12:24:06 AM Eastern Standard Time,

djhslim@... writes:

<< Has anyone on this list ever had varicose

veins stripped in a limb affected by RSD? I have heard a lot of negative

things from doctors and I really am at a point where I feel I need to

have these veins stripped but at the same time I am afraid to >>

Hi DJ,

I don't know about varicose veins, but I am not having my foot reconstructed,

because the doctors say my CRPS will spread. I don't know what else to say.

I have such a deformed foot, the knuckle to the second to last toe grew down

so I walk on it, and the main bone in my foot is grown to the right so all my

bones are being pushed to the side. It hurts. They did say once the rsd was

better. they may be able to put some type of catheter in for the surgery that

would fool the sympathetic system, then remove it after the surgery. I have

never heard of surgery not being affected by CRPS.

That's all I know.

Hugs,

Deb

[Guest guest]

Tracey,

Thanks for the welcome. I am at a point where I need support like this

as I am not in a relationship at this time and don't really have anyone

to talk to except my psychologist. It makes me feel better to know there

are others out there with the same problems. It sounds like you are

managing your pain pretty well and that you are not letting it run your

life. I am working on that but haven't gotten there yet. Maybe it is

harder this time because this is the second time around this maze for me.

At least I have found 2 doctors who are offering hope as far as

relieving some of this pain. Has anyone on this list ever had varicose

veins stripped in a limb affected by RSD? I have heard a lot of negative

things from doctors and I really am at a point where I feel I need to

have these veins stripped but at the same time I am afraid to. I am

ready to proceed but I want to feel more confident that it is the right

thing to do. I sure don't want to make things any worse. Thanks again

for the welcome,

DJ

________________________________________________________________

YOU'RE PAYING TOO MUCH FOR THE INTERNET!

Juno now offers FREE Internet Access!

Try it today - there's no risk! For your FREE software, visit:

http://dl.www.juno.com/get/tagj.

[Guest guest]

Hi Deb,

How are you? Hope all is well. I am recovering from the nerve block to

the peroneal nerve at the knee yesterday. The doctor hit the nerve with

the needle and really set it off. I am waiting for it to get better and

trying not to take too much medication so I can see how much the

injection helps (if at all). He told me it would feel worse today so

maybe tomorrow will be better. At least it is sunny and not too cold. I

think I will call a friend and see if he wants to meet us at the Park for

some bike riding and fishing this weekend. My son has a friend who will

be staying with us as his parents will be out of town so they can ride

the trails through the woods and fish while us " OLD " folks ride the paths

and rest! LOL I hope this weather stays like it is or warms up just a

bit. Well, better get going. I have to read 2 Chapters in about Managing

Pain tonight and get started on using my biofeedback tape again. I know

the end result will be worth it but it takes soooo much WORK! And I am

soooo tired of this whole mess. Anyway, I promised my psychologist I

would so here I go. Take care,

DJ

________________________________________________________________

YOU'RE PAYING TOO MUCH FOR THE INTERNET!

Juno now offers FREE Internet Access!

Try it today - there's no risk! For your FREE software, visit:

http://dl.www.juno.com/get/tagj.

[Guest guest]

Hi DJ!

I'm glad you found us, you now have lots of people to talk to. I find the

best thing about this list is the caring people that are on it.

I read your query about stripping the veins, and, quite frankly, wonder if

such a procedure would be good for you. I've never heard of anyone with RSD

doing that, and I don't understand what the Dr. thinks the benefit might be.

Have you spoken with a vascular specialist? I know how you feel about the

need to do something, anything to try and change the pain you're in. I can't

begin to tell you how many Drs. offices I've left in tears because they just

weren't DOING anything.

Please, if you can find them, speak with other people who have done this

prior to your decision.

Hugs to you!

Jo

[Guest guest]

DJ,

To be honest, I am not handling things as well as I'd like. It's a big

adjustment having this RSD. I really miss the " old me. " Thankfully I have

a man who loves me so very much and helps me get through each day. This RSD

scares me so. Thank God I have antidepressants to take because without them

I couldn't get through the day. We all have our good days but have several

bad days, too.

Friends here help so much. I want you to know we are all here for you.

Hugs, Tracey

[Guest guest]

Deb,

Thanks for the info. I know that every little bump, cut or scrape may

increase the risk of spreading RSD/CRPS but at the same time I know the

achiness I feel from the veins will not go away until they are stripped.

Before I ever had surgery on my ankle, about 20 doctors told me " NO

SURGERY " as it could make the RSD worse. They were not willing to take

the risk. Well, after feeling my foot slip out of place while I was

standing completely still several times, I finally found a surgeon who

was willing to take the risk with my insistence. Two surgeries later I

was 50 percent better and after extensive PT and biofeedback training I

was able to return to a somewhat " normal " life i.e. worked full time and

had a social life. I will never be able to run again, or play tennis or

racquetball but I could survive a day of work and dinner and an

occasional outing with friends. Now all that has been taken away again

and I am sure there is some instability that needs to be corrected

surgically. I am willing to take the risk but my surgeon refuses to

operate anymore as he cannot pinpoint the instability. I wish I could

convince him to perform exploratory surgery to just look at the spot,

about the size of a quarter, where I felt it tear. I know he could find

and fix the problem and I would get better but he refuses. So, I am

getting ready to have the veins stripped, not the main problem but at

least it is something I can do to alleviate the pain a little. I am also

seeing a new surgeon who is willing to operate on the peroneal nerve once

he has finished all other options first and I am going to a new Pain

Management Doc next week to see what he has to say. I have to keep

searching for a Doc who has the intelligence and skill to fix the

instability and is willing to take the risk. In the meantime, I have to

get the worker's comp case settled so they will pick up the bills and I

can proceed with treatments and docs not accepting medicaid. The most

frustrating thing about all this is knowing that if I was that boxer who

bit off someone's ear or some other sports hero I would not be suffering

as I am. I would have had the best doctors working 24 hours a day until

this is resolved. It isn't fair and things should be equal for everyone

but that is our great country. I have pretty much decided to go ahead

with the stripping as I have been thinking about it for 9 years now.

Last time I had it all set up and due to my doctor's advice, I let them

talk me out of it. The surgeon who was going to do it was also going to

take a look at my ankle and see if he could notice anything out of the

ordinary. Maybe if I had gone ahead he would have seen the severed

ligaments and tendons and I would not have suffered for so long the first

time around. This time I am not spending 3 1/2 years in pain waiting to

find someone who is willing to help. This doc has said he will " keep his

eyes open " and look but that he is not qualified to do any kind of ortho

repair. I said I understand, I just want him to notice if anything is

awry. I have to do this or else I will not be able to face the pain. I

have to decrease it any way I can and this is my only option at this

point. I will put it off if the other surgeon says to wait until he

takes care of the peroneal nerve, but I will get it done soon. I feel as

though I have to take charge of my medical decisions instead of relying

on my doctors so much. I am not the average patient by any stretch of

the imagination. My family doc has created 3 new codes for my " symptoms "

since last September with my unusual side effects. Anyway, I hope you

find a way to make your pain easier to live with, I wish I could make it

go away! Wouldn't it be great to twitch your nose (on purpose) and make

everything okay or to be an Immortal and regenerate? Maybe some day they

will figure this thing called RSD out and be able to help us. Take care,

DJ

________________________________________________________________

YOU'RE PAYING TOO MUCH FOR THE INTERNET!

Juno now offers FREE Internet Access!

Try it today - there's no risk! For your FREE software, visit:

http://dl.www.juno.com/get/tagj.

[Guest guest]

Jo,

Thanks for the response. I have consulted 3 vascular surgeons and they

all have said they don't think the surgery itself will make the RSD

worse. They don't think I will have a problem with swelling or anything

after the surgery. The biggest problem will be having to wear a

compression stocking for a while until the leg heals. It is unbearable

to even wear socks so I know this will be my biggest challenge. They

will give me a block during the surgery for pain and pain meds afterward

so that will not be a big deal. I find a combination of valium,

oxycontin, vistaril and ibuprofen to be the best post surgery " cocktail "

for pain control. Morphine works but makes me terribly ill. Methadone

is much better as long as it is taken with vistaril for nausea. I can't

find anyone who has RSD who has had veins stripped so I am making my

decision based on what the doctors are saying and based on my response to

other surgeries. The last surgery did not help the pain at all but it

did not make it worse either. I don't think surgery in and of itself has

ever contributed to my pain. I have always gotten better eventually

after surgery. It takes a lot of hard work, but I have the best PT team

around. I have 2 weeks to think about this before I go back to the

Vascular Surgeon and I will be seeing 3 other surgeons before then and my

family doc so I will keep asking questions. If anyone has had this done,

please let me know how it affected you. I really would like to know.

Take care,

DJ

________________________________________________________________

YOU'RE PAYING TOO MUCH FOR THE INTERNET!

Juno now offers FREE Internet Access!

Try it today - there's no risk! For your FREE software, visit:

http://dl.www.juno.com/get/tagj.

[Guest guest]

In a message dated 3/17/00 12:54:39 AM Eastern Standard Time,

djhslim@... writes:

<< I feel as

though I have to take charge of my medical decisions instead of relying >>

DJ,

I agree with you that we need to take charge, and I can't say if my foot goes

for 9 years I wouldn't just go get it fixed either. You know what is what,

and I hope they find a Doctor for you. If you come to Boston they have great

doctors, but then you have the expenses involved with getting to and from.

I do wish that we could be on bewitched, that was one of my favorite

shows by the way.

I hope the added ex-hubby aggravation gets fixed soon too. You do not need to

be in any more stressful situations!

Bye for now.

Hugs,

Deb

[Guest guest]

In a message dated 3/17/00 11:32:56 AM Eastern Standard Time,

djhslim@... writes:

<< I just want someone to " fix " it so I can get

back to being me, if that is possible. Sometimes I get the feeling I

don't even know who I am anymore. But we all have to do what we feel is

right for us. I could be wrong about needing surgery but I feel that is

what is right for me. >>

DJ,

I had numerous problems with ovaries and tubes etc. I had just had my right

tube removed and a complete hysterectomy. When I was about 3 weeks post op. I

NEW something was wrong. I ended up at pain clinics from Boston to New Jersey

and nothing was helping. I finally went to this specialist in gynecology and

sat on her table and cried. I finally was able to convince her. She in turn

called her friend and colleague and he performed an exploratory lap. This is

the best part. He removed foreign objects that had been imbedded in my

peritoneum. I just was so happy to be out of pain, and know I wasn't crazy.

So I say do what YOU feel is right.

Hugs,

Deb

[Guest guest]

Hi DJ!

Sounds like you've made your decision after thoroughly checking it out. My

last surgeon, who actually DX my RSD, kept me in the hospital for several

days after my last surgery on an epidural, hoping to " trick " my body into

believing no additional pain. It didn't work too well for me, but may for

you, as it sounds like you have had some relief in the past.

Of course, I'm hoping that this will ease your pain some. We all need that!

Hugs!

Jo

[Guest guest]

Hi Deb,

Bewitched was one of my favorite shows too. It still comes on

Nickelodeon but my son doesn't watch it. Sometimes I catch an episode

late at night when I can't sleep. It would be great to have her talent!

As far as my physical condition goes, I " think " I know I need surgery to

stabilize my ankle. I have thought and rethought this issue so many

times the past few months. I really feel and think I am in the same

predicament I was in 10 years ago when all the specialists said

everything was fine and it was just the RSD causing all the pain. I

knew then that there was a physical problem and it took so long to get to

a doctor who could and was willing to operate. I just don't want to be

going through this again. I just want someone to " fix " it so I can get

back to being me, if that is possible. Sometimes I get the feeling I

don't even know who I am anymore. But we all have to do what we feel is

right for us. I could be wrong about needing surgery but I feel that is

what is right for me. That doesn't mean surgery is right for you, that

is your decision and only you know whether you think it will help or not.

I, too, am always afraid that the surgery I am going into might make

things worse and have a panic attack right before being wheeled to the

OR. One time, right before a Lumbar Sympathetic Block, I had an anxiety

attack and my blood pressure shot way up. The nurses came and talked to

me, the anesthesiologist came and talked to me and they were all very

compassionate and understanding. This was my 7th series of blocks and I

guess it just all of a sudden hit me that I might never walk again. That

smell got to me to, you know that hospital smell. With the series I had

last February 1999 I came out of the 3rd block with a lump the size of a

tennis ball at the injection site and could not move anything from the

waist down. I panicked and thought I would never be able to move either

leg again. Talk about being scared! That was the 3rd time I had that

reaction but it was because the meds they injected overflowed to

surrounding nerves. Luckily it went away and I can move fine. Then

there was the spinal fluid leak and spinal headache that kept me on the

couch for 2 days until they realized I needed a blood patch. After they

did that I was okay. There was some humor in that one as they usually do

blood patches after an epidural when someone is pregnant and has a leak.

All the nurses who know me came over to see how I was and when they saw I

had a blood patch they all got a puzzled look on their faces and said

" Did you just have a baby? You were just here 2 days ago and you weren't

pregnant? " They got a little confused! We all got a good laugh out of

it. I have been to the OR so many times in that hospital that most of

the nurses and docs think I work there! They keep asking me what

department I work in. Everyone is very friendly and they make me feel

right at home. Well, I hope things get better for you soon with the

springtime upon us and summer to look forward to. Summer is usually my

best time of year and I look forward to it every year. Last summer was

not good but I know this one will be better. Take care,

Debbie

________________________________________________________________

YOU'RE PAYING TOO MUCH FOR THE INTERNET!

Juno now offers FREE Internet Access!

Try it today - there's no risk! For your FREE software, visit:

http://dl.www.juno.com/get/tagj.

[Guest guest]

Hi Deb,

What a terrible thing to have happen! That must have been a terrible

time for you. I know when I felt sure I needed surgery and my treating

physician kept insisting nothing was wrong that I started having

nightmares. I dreamed this same dream over and over where I broke my

leg, you could see the bone sticking out and blood gushing everywhere. I

would go to the ER and they stuck a bandage on it and told me I was fine.

Then they sent me home, no X-rays or anything and it was still gushing

blood! When I told my psychologist about it he just said that was how

strong the inner feelings I had were and they were manifesting themselves

through the dream. He didn't say it meant I needed surgery, just that I

could be wrong. He got really frustrated with me and almost wrote me

off. I am glad you got to a doctor who would listen and take care of

you. Follow your feelings and instincts because you know " YOU " better

than anyone else. Take care,

DJ

________________________________________________________________

YOU'RE PAYING TOO MUCH FOR THE INTERNET!

Juno now offers FREE Internet Access!

Try it today - there's no risk! For your FREE software, visit:

http://dl.www.juno.com/get/tagj.

[Guest guest]

Jo,

Thanks for the support. I am going to get this done sometime soon but I

do feel I should check with the other 2 doctors first. Guess a few more

weeks won't make much difference. Maybe I should get the problem with

the peroneal nerve taken care of first and that would lessen the risk of

aggravation of RSD symptoms. I will check before I proceed. I will also

ask the vascular surgeon the make sure I get an epidural during the

procedure as I have had in the past and that will help too. Take care,

Debbie

________________________________________________________________

YOU'RE PAYING TOO MUCH FOR THE INTERNET!

Juno now offers FREE Internet Access!

Try it today - there's no risk! For your FREE software, visit:

http://dl.www.juno.com/get/tagj.

[Guest guest]

DJ,

I know what you mean about living the next 40 years in pain. I am hoping and

praying they will come up with a cure. I don't always seem positive believe

me. I have cried. I hate R.S.D. I have learned to look ahead at what I can do

and not dwell on what I can't.

Believe me DJ, I am sometimes in so much pain, like last night. I couldn't go

to Mass or to my daughters soccer game. I try to remember that a good day

will come again, like the one I had a few days ago. I will have to remember

if I do get a good day, not to try and do everything all at once.

I find it hard to accept too, and my case is getting to a close and I know I

will be treated poorly by the attorney for MY insurance co. and that stinks.

I cant imagine being alone, and dealing with a comp. case though. I give you

all credit. I have it easy in comparison I guess.

I don't know what else to say. It is a horrible monster, but if you remember

the days with your son, and the beach they will be here soon.

Hugs,

Deb

[Guest guest]

Hi Deb,

How are you? I was reading the letters about being positive and

wondering how, in the face of all this pain and legal battles and doubt

by everyone about one's pain, one can remain positive? I have been

struggling for the past year to bring this pain under control again and

just can't get a handle on it. As a result, I have gotten so depressed I

just don't feel like doing anything. I go outside and say it's warm and

sunny and so what. It seems I just don't care anymore. I have been

seeing a psychologist and am reading a book titled " Managing Pain Before

It Manages You " but I just can't seem to get motivated. What's the

point? To live the next 40 years with this pain and no end in sight? I

just can't figure it out. Take care,

DJ

________________________________________________________________

YOU'RE PAYING TOO MUCH FOR THE INTERNET!

Juno now offers FREE Internet Access!

Try it today - there's no risk! For your FREE software, visit:

http://dl.www.juno.com/get/tagj.

[Guest guest]

In a message dated 3/19/00 7:29:03 PM Eastern Standard Time,

tnhkrieg@... writes:

<< I miss the old so much. I

miss my clothes, my job, my so called friends, my shoes, my tanning, my

walking, etc....What have I gained from this terrible disease? >>

Hi Guys,

I cried Tracey and read this to . I just finished saying exactly the

same things to him today.

I miss as you all must know by now jogging, playing on the trampoline with my

children. Hiking, horseback riding and biking. I miss body surfing, and shell

hunting.

Wearing normal shoes.

It is amazing how much I miss shoes. I always wore nice leather shoes with a

good size heel. I miss my full face, and breasts that don't sag. I miss being

at least a size 4, I am now a size 1.

I miss gardening, but I plan on building a greenhouse, with my husband and

children's help. That is a positive.

And yes, I plan on getting a scooter.( I refuse to use it unless I can't

walk.)

If I finally accept this I guess I will be better off mentally. I don't know.

Thanks for listening, again.

Hugs,

Deb

[Guest guest]

DJ,

Yes, it is the most difficult thing trying to be positive when you live

with RSD and all the effects it has on your life. It's one thing we all

share. I think we each have to find it in ourselves our own reasons to

fight and not give up. You have your son who loves you so much. He loves

you even though you have the RSD. I have to fight because of my kids and my

fiance. But, I have to fight for myself, too. I miss the old so much. I

miss my clothes, my job, my so called friends, my shoes, my tanning, my

walking, etc....What have I gained from this terrible disease? I have

gained some very special friends who accept me as I am where my other

friends dropped me. I have others who care now and listen when I need to

talk. I see all that so many people take for granted that I now see in a

different light; such as the geese flying overhead to the river; the fun I

have feeding them, the warmth of the sun, the flowers fighting to come up

out of the ground......so many things people just pass by and don't even

notice. No, it's not a replacement of any sort but it is a new experience.

I don't know how to get through it all myself, I just know I have to. God

put me here for a reason and he is allowing me to suffer from this disease.

He has His purpose and that I have to believe in.

DJ don't give up the fight!!

Hugs, Tracey

[Guest guest]

Tracey,

Thanks for the gentle reminders. My son is my motivation for hanging in

there and I really would be lost without him as an anchor. I know from

the past it would be easy for me to become an alcoholic and let life slip

by. I, too, have learned to enjoy the simpler things in life. The last

few years when the RSD was at it's best I " forgot " how bad it had been.

Now, it is even worse than I remember and I just get really bogged down

in trying to figure out how to make it better again. I am going to have

to face the fact that I have done everything I can possibly do to control

the pain and now I have to rely on these new physicians to do what they

can to help me. I have always been a strong person (oldest of 7 kids)

and have been one to help others solve their dilemmas. Now I can't solve

my own and I don't know how to deal with it. I feel really lost

sometimes. I guess I need to try focusing on what is important outside

of the pain to make things better. Maybe with the summer coming and warm

weather on the way my spirits will brighten. Thanks again for caring,

DJ

________________________________________________________________

YOU'RE PAYING TOO MUCH FOR THE INTERNET!

Juno now offers FREE Internet Access!

Try it today - there's no risk! For your FREE software, visit:

http://dl.www.juno.com/get/tagj.

[Guest guest]

Deb,

I don't have a comp case but a lawsuit. The deposition isn't

until May so I am trying not to worry about it yet. But, I had to sign 48

medical releases for the opposition and they are going back in my medical

history to when I was 9 years old. What they are trying to prove from when I

was 9 is beyond me but that seems to me that they are going to really fight

dirty and hard.

My accident was only a minor fender bender so they say I couldn't have been

hurt that bad. But I already had arthritis in my back and when you slam on

the brakes with enough force that the seatbelt cracked my rib what do you

expect? It has been downhill since then.

Oh well, I guess I leave that to my lawyer to worry about. After all that's

why he gets 25%

Felice