New to the Group

[Guest guest]

Hi Jeannine,

Welcome to the group! Nice to meet you. Everyone is nice here and I also try

and post when I can. It depends on what kind of day I'm having. Feel free to

email me anytime. Take care and God Bless.

Hugs,

Annie C.

a/k/a " Kittikat "

[Guest guest]

amazinggracepst wrote:

> Hi Everyone,

> I'm Jeannine and I'm 32. I suffer from RSD in my arm/hands and

> feet, carpal tunnel syndrome.

Jeannine: Welcome to this group. This group is a great source of

support and information! I also suffer from RSD primarily of my right

upper extremity after having numerous surgeries for Carpal, Gyans and

Cubital tunnel. I am here for the group. You are now part of the

group. I am here for you, too! Wishing you good days! Ken - Colorado

Springs

[Guest guest]

Welcome Jeannine,

You have found the right group for support. I can suggest a good web site for

you to gain a better understanding...http//www.rsdrx.com Read the " puzzles " .

It is written in laymen's terms and easy to understand. This doctor makes more

sense than some I have seen...too bad I don't live in Vero Beach Fl.

Warm fuzzy hugs,

" Lady Di "

amazinggracepst wrote:

> Hi Everyone,

> I'm Jeannine and I'm 32. I suffer from RSD in my arm/hands and

> feet, carpal tunnel syndrome, Brachial Plexopathy, Thoracic Outlet

> Syndrome, Insomnia and Hellsh Migranes. I'm probably missing

> something in the ailment list but it doesn't really make a

> difference. My conditions were caused by a " minor " car accident,

> ie:no major damage to the car.

>

> I joined this group so I can talk to people who understand what I'm

> living with day after day. I get really depressed sometimes and I

> get angry a lot. I get tired of people's stupid questions. Here's

> the thing that bothers me the most: My injury/damage starts at the

> back of my head and goes down both arms and spreads down to the

> middle of my back (around the bra strap area). This injury occured

> 3+years ago and people that say they are my friends will come up,

> pat me on the back, etc.and then say " oh, sorry, I forgot!! " That

> does me not good at all. That person just turned a fair day into

> hell on earth..Thanks, you jerk. I even had one acquaintence think

> it would

> be funny to yank my right arm (the side with the most severe damage)

> up and behind my back. He realized that that was not a good idea

> when I kicked in the shin, he's just lucky I didn't follow through

> with the kick or I could have hyperextended his knee. Because of my

> injuries/damage my personal space has gotten a lot larger and I am

> viciously protective of it. The guy that yanked my arm set off a

> neurological chain reaction that ended with me going home early from

> work because of pain, swelling and a migraine from hell. Don't

> people think.. Obviously not or I would not have be rear ended when

> I was stopped at a light.

>

> I was really down earlier but I'm doing a little better now. I just

> miss how my life use to be and I know that it will never be like

> that again. Not having to worry about doctors and pain meds, etc. I

> feel like I've aged 100 years in the last 3 years.

>

> Take Care Everyone. I'll be dropping a note as often as I can. I'm

> actually getting tired (those of you with RSD know that's a rarity)

> so I'm gonna try to get some ZZZ's.

>

> Jeannine

>

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>

[Guest guest]

Thanks!! Having bad pain day.. Not much energy..And dealing with

the " fun naueaous feeling " . See my neurologist on Monday.. Hope he

has some new and improved ideas for me. Really tired of hurting and

being tired. Sleep deprevation sucks. Don't mean to bring anyone

down if you're having a good day. I'm going to try and take a nap,

maybe that will help..

Hope to be more chipper next time.

TTFN,

Jeannine

> > Hi Everyone,

> > I'm Jeannine and I'm 32. I suffer from RSD in my arm/hands and

> > feet, carpal tunnel syndrome.

>

>

>

> Jeannine: Welcome to this group. This group is a great source of

> support and information! I also suffer from RSD primarily of my

right

> upper extremity after having numerous surgeries for Carpal, Gyans

and

> Cubital tunnel. I am here for the group. You are now part of the

> group. I am here for you, too! Wishing you good days! Ken -

Colorado

> Springs

>

>

>

>

>

>

>

>

[Guest guest]

Moderator's note: Content of previous message removed

Hi Jeannine, I'm new here myself. I'm 32 yrs. and a mother of

two. I do not have RSD, but I have a friend who has it, who

suffers terribly. I myslef had an L5-S1 fusion almost 3 years ago

that has left me with terrible back pain, muscle spasms, chronic

migraines, radiculopathy, neuropathy, and nerve damage in both

of my legs and feet. I can't stand it when things touch my feet

anymore, and I have alot of searing hot burning pain, too. I feel

bad for you that people constantly feel the need to touch you

when you tell them " No " . People that have never experienced any

type of chronic pain have not a clue as to how difficult it is for us

to function, and simply make it through the day. I've been talking

with others on boards like this since my failed surgery, and I find

some comfort in it myself. Perhaps if you could hand out to your

friends some type of printed info or research you've printed on

RSD, so they could read it, and see the effects it has on the

body, and read about what it is, and how it affects the areas

affected, they could better understand why you need your space.

Welcome here. Take care. wired_one

[Guest guest]

Good Morning Everyone,

I wanted to introduce myself. My name is . We live 15miles north of

Boston. I am a mom to four children. My youngest, Brigitte (6 in August) has

Noonan Syndrome, Mitochondrial Disease and has a very abnormal brain MRI. We

just learned yesterday that she tested positive for the TUBB2B gene. Several

features of Brigitte's MRI fit with this gene not working, including an abnormal

corpus callosum, the smaller than usual vermis of the cerebellum and smaller

than usual pons (part of the brain stem) and abnormal basal ganglia as well as

the asymmetric polymicrogyria that is worse on the right than left side.

I found this group last night and am so glad to have some other people to share

with.

Brigitte has had a rough start. She has had multiple open heart surgeries, many

GI surgeries including malrotation, fundoplication, gtube, bowel obstructions

etc, as well as having seizures, severe constipation, failure to thrive (just

came off of TPN after 3yrs) and many, many other issues. In her short 6 years,

she has spent over 300 nights inpatient at Boston Childrens. She is currently

in a self-contained SPED class and is struggling. We have some neuropsych

tesing scheduled for the summer. It will be interesting to see how that goes.

She is globally developmentally delayed.

Thanks for allowing me to join the group. Looks like I have alot of reading to

do!