Re: Hoping the group can help with my question

April 11, 2008

What sent me to the dr. and I got a dx. was very bad cramps all over my back

and I couldn't stand. I was lucky on the day that I went to the dr. that I

saw someone who was very well knowledgeable about fibro. He ran some tests

to rule out other possible diseases and concluded it was fibro and from my

history, he dx's that I had had it for about most of my life. How I got it,

though, is unknown. I don't think that they have really hit on an explanation

of how we get it.

Love and gentle hugs,

Debi/Central Cal.-55

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April 12, 2008

Meachelle,

HI & welcome to the group! I'll try to give you a brief explanation of

how fibro hit me...I was perfectly fine a few years ago. I worked full

time, exercised, had a lot of energy, I even smoked. Then I got

pregnant & I almost immediately started feeling crappy. Throughout my

whole pregnancy I was extremely fatigued, couldn't work, gained 60

pounds, started having really bad aches in my hips & arms, & started

having a problem sleeping. At the time I just thought that was just

what being pregnant was like for me & my dr.'s thought the same. After

being a week overdue & my uterus overextended, they tried to induce me

for 2 days, but my body just wouldn't do it. I had a rather difficult

c-section, the details of which I won't go into, but it was a long,

hard recovery (if you could call it that at all). Then when my

daughter was about 9-10 months old, strange things started happening

to me. It started with what felt like a lump in my throat, then chest

pains, heart palpitations, pain, numbness & tingling in my hands, arms

& upper back, & just some general fuzzyheadedness. After 3 trips to

the ER, multiple x-rays, CT's, an MRI, tons of blood work, they

couldn't really find anything out of the ordinary & thought maybe it

was costochondritis (inflammation of the tissues/tendons surrounding

the ribs/breastbone...which I found out later a lot of people w/fibro

get). The chest pain eventually went away, well actually it moved to

my left shoulder, then to my right hand & forearm, so I was then

diagnosed w/carpal tunnel. All the while, I'm having a really

difficult time just doing all the normal things that need to be done

while taking care of a baby & household. My PCP finally referred me to

a rheumatologist & she's the one that diagnosed me. I've since

developed other symptoms like myofascial pain, but I won't go into all

of that. As far as making sense of all of your symptoms...well, I

remember that part. It's really scary & frustrating having all of

these weird things happening to you & not knowing why. I personally

found some relief in my diagnosis because then I didn't worry so much

about each & every pain or strange feeling. For a while before I was

diagnosed, I was a wreck & thought I was dying! Now I know, it's just

the fibro...

I hope you get a speedy diagnosis. And no matter what the dr.'s tell

you, do your own research! Educate yourself as much as you can because

unfortunately most dr.'s aren't as educated on fibro as they should

be...at least here in the US. Speaking of, what are UK dr.'s general

opinions on fibro? Here, as you might know, a lot of them still don't

believe it's real & even the ones that do don't really know what to do

with it! It's crazy...

Good luck to you,

~Kandi

> Hi all,

>

> I have been with the group about 3 weeks now and read your messages,

> many that show great support of each other.

>

> I am in the process of being diagnosed ( my GP suspects I do have

> fibro) but I am waiting on appointment to see the rheumo dept (

> which can take awhile here in the UK). I do have a question that I

> am hoping that some of you might be able to help me with.

>

> My question is how did the fibro start for you?

>

> For me it started with pain in the ribs especially to touch and

> hugging was a nightmare. Over time it seemed to get worse and

> affected lots of areas including my shoulders, arms, face, right

> hip, knees ankles just to name a few. I find these areas painful but

> it waxes and wanes, no two days are alike. I also find these areas

> very tender to the touch and all my bloods show no inflammation of

> the muscles or bones. My calcium levels are ok and there was only a

> little high reading on my phosphorus level. I sweat in cold weather

> which is weird and cannot walk further than my kitchen without pain.

> I do try to exercise my legs so I don't get muscle problems.

>

> I also suffer with sleep problems, getting up at least twice a night

> on days I can sleep. I do also have problems with urination at night

> and this is another reason for disturbed sleep. I do nap and

> sometimes find that I can fall asleep mid sentence, which of course

> might be down to my medication ( MST, Lrica & Baclofen) I get

> restless leg problems along with severe cramps that wake me

> screaming and kick out loads ( much to my hubbys distress). I do

> have both cervical and lumbar spondylosis along with what my

> neurologist thinks is arachnoiditis.

>

> I guess my reason for asking is through one of confusion, I have

> researched fibro but found no where that describes how it all

> starts. I guess it does start different for everyone but I am stuck

> in a rut not knowing if I have fibro or not. Also difficult do to

> the other problems I have to work out what sympton belongs to what

> problem. I have not listed all my problems would be much longer

> email if I did.

>

> To be honest the reason I have not contributed to the group so far

> is a feeling of if I should really be here or not. My family tries

> to understand but like the topic on friends understanding my husband

> can be unsupportive and quite cruel at time. I guess I just need to

> talk to others that do understand.

>

> Thanks in advance to all that reply

>

> Hoping you all have a good pain free day

>

> Meachelle

>

April 12, 2008

I first started having pain when I was working as a nanny. I was living

in a basement appartment and careing for my 2 kids and his 3 kids(his

lived up stairs). One morning I woke up and I could not bend my right

leg. I have had pain in it since. A few years later I was helping a

friend pack his house to move to another state and he had 3 dogs one

was a large shepard on a running line. I was walking across his yard

when the dog took off after a little dog on the street and being he was

on a line the chain hit me on the back of my neck everything went down

hill from there. Over the years things got worse from the pain in my

neck I was on a very low pain killer and a mussel relaxer (I am alergic

to NSIDS). In 1999 my apendix went after the surgery I could not get

better. Several doctors sent me to other doctors cause they thought it

was there department. The pain in my stomic was the worst so they

eventualy did a hysterectomy then 3 doctors and 6 surgerys later when

there was nothing left to be causeing the pain the doctor finaly

diagnosed me as fibro.

April 12, 2008

Hi Meachelle,

I do think Fibro starts differently for everyone. I was dx in 1990 after a

lot of testing and other stuff, ruling out everything they could think of. So I

had it for at least two years before I was dx, which I think is a lot of

people's experience. I think you should be here whether it has be officially dx

or not.

It was a long time ago and it's hard for me to remember exactly how it

started. I think for me I first noticed pain in my ankles and up the outside of

my shins while I was playing tennis. (like a lot of people in the group, I was

extremely active and fit before I got fibro). Then I think it progressed to my

neck, shoulders and upper back. It could be the other way around, but those

were my first symptoms along with the terrible exhaustion, which is so different

from being tired, and the fog in my mind.

Most of the symptoms you have described sound like Fibro. There are no

definitive blood tests or Xrays or anything else that indicate you have Fibro.

Fibro doesn't cause inflammation, even though it feels like it does, so that

wouldn't show up. It seems you are going through the process of elimination

that many of us went through.

I don't know where it comes from or how you get it and don't think the reasons

have been discovered yet. I hope for research to find out soon so maybe we can

know how to get rid of it or prevent it.

I hope you feel better and welcome to the group,

Marti

meachelleb meachelleb@...> wrote:

Hi all,

I have been with the group about 3 weeks now and read your messages,

many that show great support of each other.

I am in the process of being diagnosed ( my GP suspects I do have

fibro) but I am waiting on appointment to see the rheumo dept (

which can take awhile here in the UK). I do have a question that I

am hoping that some of you might be able to help me with.

My question is how did the fibro start for you?

For me it started with pain in the ribs especially to touch and

hugging was a nightmare. Over time it seemed to get worse and

affected lots of areas including my shoulders, arms, face, right

hip, knees ankles just to name a few. I find these areas painful but

it waxes and wanes, no two days are alike. I also find these areas

very tender to the touch and all my bloods show no inflammation of

the muscles or bones. My calcium levels are ok and there was only a

little high reading on my phosphorus level. I sweat in cold weather

which is weird and cannot walk further than my kitchen without pain.

I do try to exercise my legs so I don't get muscle problems.

I also suffer with sleep problems, getting up at least twice a night

on days I can sleep. I do also have problems with urination at night

and this is another reason for disturbed sleep. I do nap and

sometimes find that I can fall asleep mid sentence, which of course

might be down to my medication ( MST, Lrica & Baclofen) I get

restless leg problems along with severe cramps that wake me

screaming and kick out loads ( much to my hubbys distress). I do

have both cervical and lumbar spondylosis along with what my

neurologist thinks is arachnoiditis.

I guess my reason for asking is through one of confusion, I have

researched fibro but found no where that describes how it all

starts. I guess it does start different for everyone but I am stuck

in a rut not knowing if I have fibro or not. Also difficult do to

the other problems I have to work out what sympton belongs to what

problem. I have not listed all my problems would be much longer

email if I did.

To be honest the reason I have not contributed to the group so far

is a feeling of if I should really be here or not. My family tries

to understand but like the topic on friends understanding my husband

can be unsupportive and quite cruel at time. I guess I just need to

talk to others that do understand.

Thanks in advance to all that reply

Hoping you all have a good pain free day

Meachelle

__________________________________________________

April 12, 2008

Hi, Meachelle. I don't think I showed any signs of trouble until

after I had my first child. The pregancy went great, physically. I

was under a lot of mental/emotional stress during it though. I was

18 and the father wasn't in the picture. Anyway, after Nic was

born. I had massive chest pain. It let up eventually but would come

back in spurts. Started seeing doctors when it got bad but they

couldn't figure it out. Eventually they just settled on

costrochondrtis (ok not good at spelling). That all began in 1990,

in 2000 I went through another really bad time and then my father

passed in 2002 a year later I was dxed. It was a relief in many ways

and a disappointment. You hope it is something that they can " fix. "

In 2002 my son also started having trouble and about 2 to 3 years

later he joined me at the rheummy. I am one of the different ones

here. I don't have any other conditions and I also have a " milder "

form. Nic is right now off all meds even though he has pain it is

not so high they want to put him on much as a teen. Now my daughter

who in 15 is showing the same signs. Rib pain seems to be it for

us. Makes me wonder some. Sad though that I and both children may

end up having it. I wish you luck with getting dxed.

Tammi

April 13, 2008

Hi Meachelle,

Glad you are here, it has been very helpful to me. It's hard to say how my fibro

started, it was a very gradual thing. I had a major family crisis a little over

4 years ago, and I started having migraines, various aches and pains all over.

My neck shoulders and back were especially painful. Then my arm muscles got in

on the act, then my legs. I finally realized that I was always in pain. I went

to my pcp and told her I couldn't take it anymore. She referred me to a rheumy

who diagnosed me...however, she also said there was nothing to be done for it

and learn to live with it. Well, my doctor was not happy when I told her that.

She started me on Lyrica and it has made a huge difference to me. The pain is so

much better. Doesn't do a thing for the exhaustion or brain fog, but I'm happy

with the results of the pain being reduced.

Hope you get the diagnosis soon so you can figure out what the heck to do next!!

Take care,

/Mi

Hoping the group can help with my question