Re: new and glad to find you

[Guest guest]

Hi Natasha, nice to meet you.

It sounds like you have had a very difficult last 8 yrs. I'm so sorry

that you have had to go through all of that.

It's awful to have fm so young and it makes you feel so old. I

started with my symptoms at age 22 and am now 32. Some days I feel

90. I used to think (and have doctors tell me) that it was all in my

head. Not a nice thought to be carrying around with you.

Post anytime with your questions, ranting, or just updates. We are

all pretty friendly (though occasionally cranky <g>).

God Bless,

a

> Hello,

> my name is Natasha i live in the UK I am 28( but feel as if i

should

> be old)and i have just last Friday been dx with FMS.

>

> After a big trauma 8 years ago i have been suffering many symptoms

> and have been tested for and seen so many people and illness.

> I have for a long time out the pain and all my other symptoms down

to

> post trauma things.

>

> Over the next 8 years i noticed many different symptoims some are

> there all the time and some come and go (ie flare ups).But never

knew

> why i had them or what it was.

>

> About 4 years after my trauma I got dx with Vit B12 def which

covered

> lots of the symptoms i have so there everyone thought i had my dx.

>

> But some of my symptoms stayed the same or even got worse and a few

> got better once i started treatment for that.

>

> For the last 8 years i have had one thing after another wrong with

me

> with no real answers as to why.

>

> Everyone just kept saying you have had a Huge trauma and will prob

> never be the same as you where before the accident.But my symptoms

> etc carried on and i had more that just pain.(will go into my

> symptoms in another post)

>

> I have been in the past under a pain cliic and been having

treatment

> for cronic back pain and had very sucessful Root blocks but about 4

> years ago i decide i was going to have to live with the pain and

> stoped having them.

>

> Last year i was pregnant and some of my symptoms got alot worse

> during and after my daughters birth. Sadly I lost my daughter Carys

> after she was born as she had a congenital condition and she only

> live 14 hours.

>

> I seen my GP and asked to be refereed to someone about my B12

> symptoms so she referred me to a neuro guy.

>

> It has taken a over 8 months to get to see him and finally i seen

him

> last week. After going through my history of my B12 def he then

asked

> me some other questions examined me and then tried to look through

my

> notes (which are huge). then said some of my symptoms where my B12

> but that he felt i had another condition called Neuro Fibromyalgia.

I

> was in hosp at the time and today is the first time i have been

able

> to try and find out more about the condition etc.

>

> I am currently pregnant again and can not start any form of

treatment

> until this baby is born.

>

> The reason i was in hospital was unexplained left sided pain which

> again the have put it down to my surgery etc from 8 years ago and i

> know think the FMS is making it worse.

>

> It has been so good to get a dx,after 8 years of thinking it was

> either in my mind or well i don't know just post trauma pain

etc.Over

> the last 8 years i thought i was going made and imagining all the

> pain fatigue etc.When i get flare ups i feel so C*@$.I feel as if i

> am old before my time.

>

> I had got the the point where i was so sick of feeling ill and in

> pain etc and know i know why.

>

> the neuro guy feels my accident is what has brought The Fms on.

> I have so many questions etc but i have no been sat at the comp

> researching this condition i am to much pain to write them all.

>

> One day at a time.

>

> I hope i can find some friends and support here in my road to

> learning more about this condition and how to cope and deal with

all

> that comes with it.

> I have bought some books to try and learn more and i am seeing my

gp

> next week to talk about where i go from here.

> I am sure i will have plenty of questions to ask you all over the

> next few weeks .

>

> Natasha

[Guest guest]

Natasha,

Hi and welcome to the group. I just have to say, WOW have you been

through a lot in the past 8 years, and to have all of this happen to

you when you were so young....you've been through the mill!

It must have been hard for you to go from doctor to doctor and place

to place just trying to find an answer to what was going on with

you, and to have it drag out for 8 years! I hear that so many

times, and I feel so fortunate that my doctor made a dx right away.

Not that it makes much of a difference, since there's no cure or

treatment that's guaranteed to work, but at least I have answers,

and some means of relief. I've also been granted intermittent

medical leave at work, so I can take time off when I have flares,

and my job is protected.

I can really understand and sympathize when you say that it's just

been one thing after another for years. I've had that going on

too. I feel like my body is just slowly falling apart, and being

put back together one piece at a time. Since 1998, I've had 4

surgeries, and in June of 2002, I had a very severe adverse reaction

to an antibiotic that was so traumatic to my body, and caused so

much damage, that it caused me to develop Fibromyalgia, as well as

chronic, full body tendonitis, which my doctor dx'ed in April of

last year. It's very comforting to know that something that was

supposed to make me feel better caused me to develop a lifelong,

very painful illness....NOT!

I'm so very sorry for the loss of your precious daughter. I had a

miscarriage in between the births of my daughters, which cannot

compare to what you went through, but the pathology report they

performed said that the baby would have been born with severe and

multiple birth defects and brobably would have been stillborn or

lived only hours as well. I know this child you are carrying now

cannot take Carys's place, but I hope it comes into the world

healthy and beautiful. Children are such a wonderful gift! I just

became a great aunt again today, and I'm only 33! How many months

are you?

I've never heard of Neuro Fibromyalgia, so I am looking forward to

learning along with you, as well as getting to know you better. You

take care of yourself, and keep us posted on what your doctors have

to say.

Hugs,

Jen

[Guest guest]

Hello Jan

thank you for your lovly post.

As far as i know Neuro Fibromyalgia is the same as fibromyalgia & I

think the neruroligest i seen added that on to the front of it.Dont

Know why though it maybe what they say in the UK or just what that

perticuler doc called it.

As everything i have found when i have serech Neuro Fibromyalgia has

been the same if i sereched Fibromyalgia, They all seem to come up

with the same thing symptoms etc.

So really i just have the same as you all.

As you say every type of loss is different , but loss is all the same

sometimes in the way it is delt with after it happens.I know people

who have had m/c and they still think about them as a child.And have

the what ifs etc. No one can never compare any type of baby loss(if

they did they prob have not had it happen to them). Everyone deals

with it differently but it i know from other people m/c is a hard

loss to go through aswell and can be just as painful.And i wish no

loss like this had to happen to anyone.

I miss my daughter Carys terriable and long to hold her again I know

that this will never happen until i join her.I just at the mo cant

settle with that and the pain and the longing to have her here some

times is just very painful but i know that will never go but i do

hope it get easier.Carys showed me so much love in her short life and

still does and that will always be with me.She is with me all the

time and i think about her all the time.She will never leave my

heart,mind and soul.

I am 24 weeks today The Condition Carys had was dx before she was

born so we knew she only had a 25-50% chance of surviving after her

birth.We gave her every possiable chance we could. She was just very

ill right away.

So far this baby is showing no signs of the same condition but i am

being scanned every 4 weeks.

Will post more later as i have only just got up and need to have

breakfast.

Thanks again Natasha

> Natasha,

>

> Hi and welcome to the group. I just have to say, WOW have you been

> through a lot in the past 8 years, and to have all of this happen

to

> you when you were so young....you've been through the mill!

>

> It must have been hard for you to go from doctor to doctor and

place

> to place just trying to find an answer to what was going on with

> you, and to have it drag out for 8 years! I hear that so many

> times, and I feel so fortunate that my doctor made a dx right

away.

> Not that it makes much of a difference, since there's no cure or

> treatment that's guaranteed to work, but at least I have answers,

> and some means of relief. I've also been granted intermittent

> medical leave at work, so I can take time off when I have flares,

> and my job is protected.

>

> I can really understand and sympathize when you say that it's just

> been one thing after another for years. I've had that going on

> too. I feel like my body is just slowly falling apart, and being

> put back together one piece at a time. Since 1998, I've had 4

> surgeries, and in June of 2002, I had a very severe adverse

reaction

> to an antibiotic that was so traumatic to my body, and caused so

> much damage, that it caused me to develop Fibromyalgia, as well as

> chronic, full body tendonitis, which my doctor dx'ed in April of

> last year. It's very comforting to know that something that was

> supposed to make me feel better caused me to develop a lifelong,

> very painful illness....NOT!

>

> I'm so very sorry for the loss of your precious daughter. I had a

> miscarriage in between the births of my daughters, which cannot

> compare to what you went through, but the pathology report they

> performed said that the baby would have been born with severe and

> multiple birth defects and brobably would have been stillborn or

> lived only hours as well. I know this child you are carrying now

> cannot take Carys's place, but I hope it comes into the world

> healthy and beautiful. Children are such a wonderful gift! I just

> became a great aunt again today, and I'm only 33! How many months

> are you?

>

> I've never heard of Neuro Fibromyalgia, so I am looking forward to

> learning along with you, as well as getting to know you better.

You

> take care of yourself, and keep us posted on what your doctors have

> to say.

>

> Hugs,

> Jen

[Guest guest]

a

thank you for welcoming me it is nice to know i am not alone,

I dont know what i would do without my comp.

I use it for so much support for all sorts of things.

Natasha

> > Hello,

> > my name is Natasha i live in the UK I am 28( but feel as if i

> should

> > be old)and i have just last Friday been dx with FMS.

> >

> > After a big trauma 8 years ago i have been suffering many

symptoms

> > and have been tested for and seen so many people and illness.

> > I have for a long time out the pain and all my other symptoms

down

> to

> > post trauma things.

> >

> > Over the next 8 years i noticed many different symptoims some are

> > there all the time and some come and go (ie flare ups).But never

> knew

> > why i had them or what it was.

> >

> > About 4 years after my trauma I got dx with Vit B12 def which

> covered

> > lots of the symptoms i have so there everyone thought i had my dx.

> >

> > But some of my symptoms stayed the same or even got worse and a

few

> > got better once i started treatment for that.

> >

> > For the last 8 years i have had one thing after another wrong

with

> me

> > with no real answers as to why.

> >

> > Everyone just kept saying you have had a Huge trauma and will

prob

> > never be the same as you where before the accident.But my

symptoms

> > etc carried on and i had more that just pain.(will go into my

> > symptoms in another post)

> >

> > I have been in the past under a pain cliic and been having

> treatment

> > for cronic back pain and had very sucessful Root blocks but about

4

> > years ago i decide i was going to have to live with the pain and

> > stoped having them.

> >

> > Last year i was pregnant and some of my symptoms got alot worse

> > during and after my daughters birth. Sadly I lost my daughter

Carys

> > after she was born as she had a congenital condition and she only

> > live 14 hours.

> >

> > I seen my GP and asked to be refereed to someone about my B12

> > symptoms so she referred me to a neuro guy.

> >

> > It has taken a over 8 months to get to see him and finally i seen

> him

> > last week. After going through my history of my B12 def he then

> asked

> > me some other questions examined me and then tried to look

through

> my

> > notes (which are huge). then said some of my symptoms where my

B12

> > but that he felt i had another condition called Neuro

Fibromyalgia.

> I

> > was in hosp at the time and today is the first time i have been

> able

> > to try and find out more about the condition etc.

> >

> > I am currently pregnant again and can not start any form of

> treatment

> > until this baby is born.

> >

> > The reason i was in hospital was unexplained left sided pain

which

> > again the have put it down to my surgery etc from 8 years ago and

i

> > know think the FMS is making it worse.

> >

> > It has been so good to get a dx,after 8 years of thinking it was

> > either in my mind or well i don't know just post trauma pain

> etc.Over

> > the last 8 years i thought i was going made and imagining all the

> > pain fatigue etc.When i get flare ups i feel so C*@$.I feel as if

i

> > am old before my time.

> >

> > I had got the the point where i was so sick of feeling ill and in

> > pain etc and know i know why.

> >

> > the neuro guy feels my accident is what has brought The Fms on.

> > I have so many questions etc but i have no been sat at the comp

> > researching this condition i am to much pain to write them all.

> >

> > One day at a time.

> >

> > I hope i can find some friends and support here in my road to

> > learning more about this condition and how to cope and deal with

> all

> > that comes with it.

> > I have bought some books to try and learn more and i am seeing my

> gp

> > next week to talk about where i go from here.

> > I am sure i will have plenty of questions to ask you all over the

> > next few weeks .

> >

> > Natasha