Re: Hello I'm new

February 10, 2005

Welcome to the group Cari. I've had rsd for almost 3 years. It started in my hand and now has is in my arm and legs. My ortho diagnosed me and started treatment immediately. Fire away with the questions.

Hi, my name is Cari. I was diagnosed in October 2004 in my leg. Now I am beginning the process of two major lawsuits, filing for SSD, and the process of treatment. I was kinda lucky in that my injury happened in Oct 03, so although I went a year w/o being treated and went to various docs when my ortho did diagnose me and put me on meds I went to a neuro and he immeadiatly agreed and is agressively treating me. I am on 4800mg Neurotin, darvocet and percocet (which dont work) ambien to sleep, cymbalta, and lidocaine patches(also dont work). I have lots of questions so hopefully I can find my answers with people who also go through what I am. Thanks C

February 10, 2005

Cari - Welcome to the group. I hope that we'll be able to answer your questions and offer you the support that you're seeking. My best - Barbaracari_lamb wrote:

Hi, my name is Cari. I was diagnosed in October 2004 in my leg. Now I am beginning the process of two major lawsuits, filing for SSD, and the process of treatment. I was kinda lucky in that my injury happened in Oct 03, so although I went a year w/o being treated and went to various docs when my ortho did diagnose me and put me on meds I went to a neuro and he immeadiatly agreed and is agressively treating me. I am on 4800mg Neurotin, darvocet and percocet (which dont work) ambien to sleep, cymbalta, and lidocaine patches(also dont work). I have lots of questions so hopefully I can find my answers with people who also go through what I am. Thanks C

February 10, 2005

Hi Cari,

Welcome! I am also a relative newby. You’ll

find this group to be incredibly warm and friendly and helpful. You’re in

the right place. J

I was just diagnosed, in fact I am just

starting drug treatment today, just 900 mg per day Neurontin along with the 1000

mg of Naproxen I’ve been taking to take the edge off. I’m a little

stoned from the Neurontin, but in a pleasant way. My rsd/crps is in both feet,

but I do not have a very bad case of it compared to what I have read about on

this board. That being said, I spend most of my time outside of work in a

wheelchair, so it’s had a major impact on my life nonetheless. Doctors

are still hopeful they can reverse it – I have my fingers crossed.

There are also a few people here who are

well versed in the legal aspects of this disease and are going through cases

too – perhaps they can offer advice…

good luck to you!

Aly

Hello

I'm new

February 10, 2005

Welcome, Cari,

I'm sure you'll find everyone here to be wonderfully caring and supportive. If

you have questions, all you need to do is ask them, anyone that has any info

will surely answer you!

Let us know a little more about yourself when you're comfortable doing so!

Hugs,

Jo

February 10, 2005

>

> Hi, my name is Cari. I was diagnosed in October 2004 in my leg.

Hi Cari, Welcome to this awesome group. I just wanted to say

something about your workmens comp case. My husband was hurt on the

job and he settled after he was diagnosed with RSD fortunately! So

his claim was settled under the agreement that all future medical

cost which pertained to his accident and injuries would be covered.

Which has worked out very well so far. So make sure your workmens

comp lawyer looks into all future problems and medical cost that

this horrible desease will incure! And there are many! I welcome you

and know that you have great support here. God Bless, Janet M

February 10, 2005

> >

> > Hi, my name is Cari. I was diagnosed in October 2004 in my

leg.

>

> Hi Cari, Welcome to this awesome group. I just wanted to say

> something about your workmens comp case. My husband was hurt on

the

> job and he settled after he was diagnosed with RSD fortunately! So

> his claim was settled under the agreement that all future medical

> cost which pertained to his accident and injuries would be

covered.

> Which has worked out very well so far. So make sure your workmens

> comp lawyer looks into all future problems and medical cost that

> this horrible desease will incure! And there are many! I welcome

you

> and know that you have great support here. God Bless, Janet M

OMG!! I just reread your post and you said nothing about workmans

comp!! I hate when that happens1 LOL Well, maybe one of your

lawsuits is comp and I won't look too stupid! Sorry about that.

Welcome to this awesome group anyways. Not many here that are

alzheimered-chalanged as I am! God Bless, Janet M

February 10, 2005

>

>Well actually my initial injury happened at a resturant, Red Robin.

I didnt work there, they paid the first $5,0000 of medical bills and

now we enter negatiations. I am also going after the docter who did

my first surgery. The RSD is in my right leg and was showing up in

Feb. and was in my report by my first docter who worked with the

surgen. Both did nothing and the surgery was in March. The surgen

fixed torn tendons but also cut my achilles tendon without permission

and the surgery insision was over my sciatic nerve ending. So not a

workmans comp case. I dont know if that is good or bad. I guess we

will see. My lawyer is my husbands godfather, a really good lawyer in

Denver so he is doing everything for free. We just really started so

I have no idea what is coming down the road or how much I will get if

I get anything. I also have reations every time they increase my

neurotin, except I am " drunk " on it. In fact I just increased and am

definatly not feeling like myself. We think that the neuro anf

cymbalta are bottoming out my blood pressure because I am not felling

right. If anyone has any advice about the legal stuff or disability

info, I just filed for SSD.

Thanks, Cari

February 10, 2005

Welcome to the group cali, I am glad that your drs are

now treating you aggressivly. I have had rsd for

almost 3 years and its a battle everyday.. but these

people have helped me in my darkest hour and havbe had

me get my butt in gear and told me things i needed to

hear even if i didnt want to.. but in the end it was

excatly what i needed to here.. they will help you in

so many ways.. make sure you tell us a bit about

yourself.. Im a younging im 22 and sometimes act very

young so when i do dont mind me so much good luck and

glad the meds are helping you

cass

--- cari_lamb slamboards@...> wrote:

>

> Hi, my name is Cari. I was diagnosed in October 2004

> in my leg. Now I

> am beginning the process of two major lawsuits,

> filing for SSD, and

> the process of treatment. I was kinda lucky in that

> my injury

> happened in Oct 03, so although I went a year w/o

> being treated and

> went to various docs when my ortho did diagnose me

> and put me on meds

> I went to a neuro and he immeadiatly agreed and is

> agressively

> treating me. I am on 4800mg Neurotin, darvocet and

> percocet (which

> dont work) ambien to sleep, cymbalta, and lidocaine

> patches(also dont

> work). I have lots of questions so hopefully I can

> find my answers

> with people who also go through what I am. Thanks C

>

__________________________________________________

February 10, 2005

Hi Cari!

Welcome to the RSD-CRPS of America group! Sorry you had to get RSD. My heart goes out to everyone with this. I wouldn't wish this RSD on my worst enemy. Glad you are receiving treatment for the RSD. It took me over 5 years to finally get a diagnosis, and needless to say I was already in the 3rd stage of the process. I have had the RSD since March of 1989, and it has spread some throughout my body.

It is never a good time to get it, but by some of the posts I have been reading, more people are getting the help they need. It is hard to find a decent doctor, but wish the best to you. If you have any questions, please feel free to ask away. Take care and again welcome to the group.

Conniecari_lamb wrote:

Hi, my name is Cari. I was diagnosed in October 2004 in my leg. Now I am beginning the process of two major lawsuits, filing for SSD, and the process of treatment. I was kinda lucky in that my injury happened in Oct 03, so although I went a year w/o being treated and went to various docs when my ortho did diagnose me and put me on meds I went to a neuro and he immeadiatly agreed and is agressively treating me. I am on 4800mg Neurotin, darvocet and percocet (which dont work) ambien to sleep, cymbalta, and lidocaine patches(also dont work). I have lots of questions so hopefully I can find my answers with people who also go through what I am. Thanks C

April 18, 2008

Hi,

I'm glad you found the group so you can vent. I can imagine fibro could be

harder on a man's ego since they are supposed to be the tough one's. It's hard

enough on my ego!

Playing/caring for kids involves a lot of guilt because we can't do what other

parent's do. I don't know the answer to that one since I am struggling with the

same thing with my twins. I think most of us are guilt ridden about our

children and what we can't do for them.

Has your wife researched or educated herself about fibro? She really needs

to.....easier said than done, my husband won't. He runs hot & cold with me on

being supportive. At times it's been so bad that I wanted to leave with my

twins, but I am not able to work right now, so like Phyllis, I'm trapped. I

think some spouses realize that and sometimes they feel they can behave however

they want because there is nothing we can do about it. Does your wife work?

What is it that you do? How supportive is your family?

Your story sounds like mine. I was very athletic, but always was so sore from

everything. Much more than everyone else. I was also so tired all the time.

Deep down, I knew something was wrong, even my mother knew something wasn't

right, but we couldn't figure it out. Now, I look back and can see where it

almost cost me my life a couple of times. It's really hard to feel so old and

crippled when a huge part of our self identity is being the athletic one. I

think the toughest part about fibro is losing your identity and in a way we lose

our future. I'm am having a really hard time coming to terms with having a

chronic illness that has destroyed my life. I've read that many people with

fibro go thru the greiving process until they accept it. Well, I don't want to

freaking accept it! I have too many plans left that I can't do with fibro. I

also read that you have to forgive your body for forsaking your dreams and

goals. I don't think so. I don't want to be this sick person that is a burden

on others. So, I research this disease every second I can to try to figure out

something that will work for me. The more knowlege you can learn about it, the

better you can take care of yourself and maybe even improve. It's also so

important to learn about pacing yourself and figuring out what puts you into a

flare. I have finally figured out that I have to do this because I'm

continually making it harder on myself by pushing too hard only to wind up in

horrible pain and in bed for 2 weeks. You have to make your wife and children

know how important it is for you to stop when your body is telling you. For

years I tried to make my husband happy by doing things I wasn't up for. Now, I

have learned to say no. But, if your spouse, like mine, doesn't get it, it

builds resentment. I'm hoping that your wife, being a woman, will become more

nurturing towards you and willing to educate herself. Also, your kids sound a

little older than mine, so hopefully you can explain it better to them. There

is a children's book about fibro. It is does describe the mother as having it

though. I keep planning on buying it for my twins, but haven't yet. I think

it's called, Why is Mommy in Bed Again? I don't know if you could put a twist on

it so your kids could get it, but I thought I would mention it. Have you

googled men with fibro? Their is probably some good info and you could print it

out and give it to your wife................ok, I'm done blabbing. Welcome to

the group!

Jill

Hello I'm new

I hope I'm doing this right? I read a post by Phyllis and felt very

moved I'm sure many of us feel that way, but I am new and have really

never talked any one about this. I was very athletic in my childhood

but I was always sore, sorer than others. I just contributed it to

working extra hard at sports. I'm in my thirties and have a wife and

two kids. I'm not at all as active as I used to be, but the pain

seems to have gotten worse. I was told I have Fibromyalgia by my

doctor, less than a year ago, and I never even heard of it. I hated

the fact that I have something that is not fixable. I always prided

myself on being a strong health man. Now I feel week, I have pain in

every single joint. It takes so much work getting out of the bed in

the morning. Then the strange indescribable ache, tingle, numb, thing

that just annoys the hell out of me. And I get so bummed, I've think

I've always had some depression, but this does not help. Fibro seems

to be always on my mind, but my wife seems to forget or not

understand that sometimes I just can't do any more. I feel so lazy

and I hate it, she looks at my like I'm just trying to get out of

doing thing but most of the time that is not true. My kids want to

run around and I just have limit that I never thought I would have. I

had kids at age 25 because I want to be able to keep up with them and

now this. I have a job that I need to be very careful what illnesses

I have and I'm very limited in the medication I can take or I will

loss my job. I sorry for rambling on like this. It just feels good to

think there is someone out there that might relate.

April 18, 2008

hey

and i understand your words. I was a street paramedic 25 years until i fell and

broke my shoulder . had to have reconstructive surgery and now can not lift more

than 15-20 lbs with the arm. with in a fews years i started hurting every where.

now i get diagnosed with fibro in Feb and this month diabetes.

life seems to have its practical jokes. if i wasn't feeling so bad tonight i

would just ,,,, well we all know how we may want to finish that.

hang in there man, and start a diary.

Diane

>

> Subject: Hello I'm new

> To: Fibromyalgia_Support_Group

> Date: Friday, April 18, 2008, 12:52 PM

> I hope I'm doing this right? I read a post by Phyllis

> and felt very

> moved I'm sure many of us feel that way, but I am new

> and have really

> never talked any one about this. I was very athletic in my

> childhood

> but I was always sore, sorer than others. I just

> contributed it to

> working extra hard at sports. I'm in my thirties and

> have a wife and

> two kids. I'm not at all as active as I used to be, but

> the pain

> seems to have gotten worse. I was told I have Fibromyalgia

> by my

> doctor, less than a year ago, and I never even heard of it.

> I hated

> the fact that I have something that is not fixable. I

> always prided

> myself on being a strong health man. Now I feel week, I

> have pain in

> every single joint. It takes so much work getting out of

> the bed in

> the morning. Then the strange indescribable ache, tingle,

> numb, thing

> that just annoys the hell out of me. And I get so bummed,

> I've think

> I've always had some depression, but this does not

> help. Fibro seems

> to be always on my mind, but my wife seems to forget or not

>

> understand that sometimes I just can't do any more. I

> feel so lazy

> and I hate it, she looks at my like I'm just trying to

> get out of

> doing thing but most of the time that is not true. My kids

> want to

> run around and I just have limit that I never thought I

> would have. I

> had kids at age 25 because I want to be able to keep up

> with them and

> now this. I have a job that I need to be very careful what

> illnesses

> I have and I'm very limited in the medication I can

> take or I will

> loss my job. I sorry for rambling on like this. It just

> feels good to

> think there is someone out there that might relate.

>

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

>

> 1. While it is wonderful to share our experiences with

> everyone on the list as to what treatments do and don't

> work for us, pls always check with your dr. Some treatments

> are dangerous when given along with other meds as well as to

> certain health conditions or just dangerous in general.

>

> 2. If you are in a difficult situation (doesn't matter

> what it is) pls don't be afraid to ask for help. It is

> the first step to trying to make that situation better.

>

> 3. To unsubscribe the e-mail is:

> Fibromyalgia_Support_Group-unsubscribe

>

> 4. Also, it is not uncommon for more than one member to be

> feeling bad at the same time when it comes to flares and

> b/c of that potentially take something another member says

> the wrong way. And that includes the things that one

> member may find funny (even if it's laughing at fibro

> itself) even though we who deal with illness whether one

> such as fibro or multiple illnesses try to keep a sense of

> humor.

>

> 5. Pls let's be gentle with each other, and if you are

> having a bad day pls let us know so that we can do our best

> to offer our support.

>

> Have a nice day everyone.

>

April 19, 2008

-, so glad you found this group. And I believe you will find

that you are not the only male who posts here. I am fortunate that

my husband usually understands that I am limited in what I do -- and

even remember when I first started having what I now know is fibro,

that my niece who was about 4 or 5 years old once reached up for me

to pick her up and said " I'm sorry, I forgot you can't pick me up any

more! " Don't remember my reaction, but have not forgotten that even

at that age she knew I couldn't always hold her. Probably did seem

different to her in more recent years when I have picked up any of

her three daughters. But there is so much more info than 30 years

ago and I am on meds that do help. And if you think you have some

depression, I would see if I could see a pyschiatrist if medical

insurance will cover it. As much as I hated the one I have seen

since 2001 or so (she thought she should be the one writing the

scripts for meds that my MD had always written for the fibro!),

seeing either a pyschiatrist or someone else in the mental health

field (and preferrably one who understands fibro) can be a big help.

But I also have to say that it took me 4 or 5 tries to find a new one

I could relate to when we moved to Pittsburgh. That's a very

important part of seeing any doctor or therapist --- that they

understand or have some knowledge about fibro. And Jill's comment

about the book for children might even help your wife?

I do commend you on having a doctor who recognized what was causing

all of the pains you were having! I have had doctors tell me that

fibro is not really a disease (prior to it becoming part of the

medical profession's lexion of disorders, that is) --- but there are

still many out there who still don't really believe it to be true.

Have you taken your wife with you when you see your doctor? It might

be helpful for her to hear more info from the doctor, especially if

he/she has the time to explain just what is happening, the treatment

and that you can no longer do what you once did.

I had my first flare when I was in my early 30's, seems that must be

about when so many people first realize there is something going on

that they don't understand.

But welcome and I hope you will find some good advice and also

support that will be beneficial to you here!

>

> Hi,

>

> I'm glad you found the group so you can vent. I can imagine fibro

could be harder on a man's ego since they are supposed to be the

tough one's. It's hard enough on my ego!

>

> Playing/caring for kids involves a lot of guilt because we can't do

what other parent's do. I don't know the answer to that one since I

am struggling with the same thing with my twins. I think most of us

are guilt ridden about our children and what we can't do for them.

>

> Has your wife researched or educated herself about fibro? She

really needs to.....easier said than done, my husband won't. He runs

hot & cold with me on being supportive. At times it's been so bad

that I wanted to leave with my twins, but I am not able to work right

now, so like Phyllis, I'm trapped. I think some spouses realize that

and sometimes they feel they can behave however they want because

there is nothing we can do about it. Does your wife work? What is

it that you do? How supportive is your family?

>

> Your story sounds like mine. I was very athletic, but always was

so sore from everything. Much more than everyone else. I was also

so tired all the time. Deep down, I knew something was wrong, even

my mother knew something wasn't right, but we couldn't figure it

out. Now, I look back and can see where it almost cost me my life a

couple of times. It's really hard to feel so old and crippled when a

huge part of our self identity is being the athletic one. I think

the toughest part about fibro is losing your identity and in a way we

lose our future. I'm am having a really hard time coming to terms

with having a chronic illness that has destroyed my life. I've read

that many people with fibro go thru the greiving process until they

accept it. Well, I don't want to freaking accept it! I have too

many plans left that I can't do with fibro. I also read that you

have to forgive your body for forsaking your dreams and goals. I

don't think so. I don't want to be this sick person that is a burden

on others. So, I research this disease every second I can to try to

figure out something that will work for me. The more knowlege you

can learn about it, the better you can take care of yourself and

maybe even improve. It's also so important to learn about pacing

yourself and figuring out what puts you into a flare. I have finally

figured out that I have to do this because I'm continually making it

harder on myself by pushing too hard only to wind up in horrible pain

and in bed for 2 weeks. You have to make your wife and children know

how important it is for you to stop when your body is telling you.

For years I tried to make my husband happy by doing things I wasn't

up for. Now, I have learned to say no. But, if your spouse, like

mine, doesn't get it, it builds resentment. I'm hoping that your

wife, being a woman, will become more nurturing towards you and

willing to educate herself. Also, your kids sound a little older

than mine, so hopefully you can explain it better to them. There is

a children's book about fibro. It is does describe the mother as

having it though. I keep planning on buying it for my twins, but

haven't yet. I think it's called, Why is Mommy in Bed Again? I don't

know if you could put a twist on it so your kids could get it, but I

thought I would mention it. Have you googled men with fibro? Their

is probably some good info and you could print it out and give it to

your wife................ok, I'm done blabbing. Welcome to the

group!

>

> Jill

> Hello I'm new

>

> I hope I'm doing this right? I read a post by Phyllis and felt

very

> moved I'm sure many of us feel that way, but I am new and have

really

> never talked any one about this. I was very athletic in my

childhood

> but I was always sore, sorer than others. I just contributed it

to

> working extra hard at sports. I'm in my thirties and have a wife

and

> two kids. I'm not at all as active as I used to be, but the pain

> seems to have gotten worse. I was told I have Fibromyalgia by my

> doctor, less than a year ago, and I never even heard of it. I

hated

> the fact that I have something that is not fixable. I always

prided

> myself on being a strong health man. Now I feel week, I have pain

in

> every single joint. It takes so much work getting out of the bed

in

> the morning. Then the strange indescribable ache, tingle, numb,

thing

> that just annoys the hell out of me. And I get so bummed, I've

think

> I've always had some depression, but this does not help. Fibro

seems

> to be always on my mind, but my wife seems to forget or not

> understand that sometimes I just can't do any more. I feel so

lazy

> and I hate it, she looks at my like I'm just trying to get out of

> doing thing but most of the time that is not true. My kids want

to

> run around and I just have limit that I never thought I would

have. I

> had kids at age 25 because I want to be able to keep up with them

and

> now this. I have a job that I need to be very careful what

illnesses

> I have and I'm very limited in the medication I can take or I

will

> loss my job. I sorry for rambling on like this. It just feels

good to

> think there is someone out there that might relate.

>

April 19, 2008

Welcome ?

I never thought of a man having fibro in the sense that you are supposed to be

" the man, strong, bullets bouncing off your chest, etc. " ...not to make light of

it at all, but I see your point. The first thing I would suggest would be to buy

the book Fibromyalgia for Dummies. It explains in laymans terms the ins and

outs, with sections for family members to read. It is very good and may help

your wife to understand this fun disease we have. I think you will be so glad

you found this list. The things you learn on here are amazing. And the support

is unbelievable. And you can whine, rant and rave and these people stay your

friends!!! Also, learn as much about your disease as you can. You need to

empower yourself with knowledge as you will come across doctors that don't get

it. If you feel you have depression, get it treated there are some

antidepressants that actually help with pain. Keep in touch...we are always

here!

Hugs,

/Mi