Re: Hi everyone, I'm new to the board....

[Guest guest]

,

All I can say is this: you have come to the right

place!!!

We undrestand what it is like to have no one believe

you!! And to have the Dr's say there is nothing wrong

with you, or it's all in your head!! They are WRONG!!!

You just need to find the right DR. I was lucky, but I

have read on this board where it can take up to 7

years to get diagnosed...I say this not to discourage

you...but so you will see that others have had the

same types of problems with DR's that you have...you

are not alone in this! You have to hang in there and

fight for yourself...no one else is going to do it..it

is up to you..and I know that it is hard to do when

you are feeling so misunderstood and so helpless about

the whole thing. Let us know where you are

located...maybe someone here knows of a Dr in your

area with enough expertise in this area that he can

listen and understand what you are saying. Dr's who do

not know about these auto-immune diseases do a lot of

damage by telling pt's that it is all in their

heads...they then lose valuable time which they could

have used to fight the disease instead of fighting for

care!! But that is the way the system is...you have to

be harder and smarter than those Dr's who say it is

all in your head. Start by looking for a DR. who

specializes in auto-immune disorders...a

rheumtologist. Starting there gives you a few rungs up

the ladder for free..beause he does believe that these

diseases and symptoms exist...he will listen and

believe in you and have a plan for you to fight and

get a handle on your symptoms. And listen to whats

said here...not everything will apply to your

situation..but use what you can from the people

here...some of them have been fighting these diseases

for a very long time....you can learn a lot from

them!!! Opening up to a room full of strangers is not

easy...but we are not really strangers...we are having

the same symptoms and problems that you are!!! We are

all in the same boat!!! SO, welcome, you have come to

the right pleace. Start looking for a rheumatologist

(Rheummy) as fast as you can...you need to get a grip

your speciic diagnosis and what you can be doing to

slow the progression and treat your syptoms!!!No

question is too silly or too stupid to ask....it's

better to ask and find out it is no big deal, than not

ask and miss something really important. Keep checking

the posts here. And feel free to bit*h, complain, and

whine....we know what you are going through! We are

here to be a friend to you! and to help you in any way

we can! You can email me anytime...I am a good listner!!.................jenna

__________________________________________________

[Guest guest]

>

> >

, Sorry to hear all your troubles, Let me tell you It is not in

you head, and you also sound so much like my daughter, she to was just

told she has fribo, and is a mother of two little grils, about the

same age as yours, and too she was in a rear end car acct. but with

her first girl any way you have come to the right place everyone here

is great and they will take care of you here, take care and ask any

thing you need,

Janet IN IL

> My name is and I live in Pennsyvlania. I'm a 23 year old

> mother of 2 beautiful little girls. Kyla just turned 3 and Leah is

16

> months old. They sure do keep me busy.

>

> >

>

>

[Guest guest]

Hi , welcome to the group, and hello to everyone else!

I'm Judi, a 60 YO wife, mom, grandma (to a 6-year old and 3-year old

triplets.) I have Dercum's Disease which was originally dx as

fibromyalgia because the doctors had never heard of it before. It

involves a great deal of pain, and like you, many people still do not

believe that a person could be in so much pain without the outward

appearance. Getting adequate treatment for the pain is one of the

hardest things a person can do, I think. I don't envy you being a

young mother with 2 small children and a family who doesn't

understand how you feel. It has taken my husband and daughter 3

years to get to that point.

One of the things that helped me get the point across to friends and

family was to write a letter which described all my symptoms, and

asked them to be understanding when I could not do things that they

were used to seeing me do. Having my husband along when I went to

the doctor helped. Now that he is dealing with his own health

problems (Parkinson's) we are quite a team, allowing each other our

bad days and enjoying our good ones.

Be persistent, be patient, and above all, don't give up hope.

Judi in Indiana