Re: Re: I wish I knew more, Bobbi

[Guest guest]

Dear Bobbi,

The truth is I don't think anyone really knows what

fibromyalgia is. It certainly seems a mystery to the

dozen doctors I've seen since waking up one morning in

severe pain almost two years ago and never fully

recovering. I once made a chart that listed the

medical professionals I've seen and what they told me

in answer to about ten questions I've been

asking--like how damaging is it to be on pain

meds?--and there wasn't a single question where two

doctors didn't directly contradict each other. One

said I couldn't have fibro because I didn't have

tender points, and another one said I certainly could.

One doctor said pain meds were devasting and another

said that they really weren't dangerous at all. One

said it couldn't be fibromyalgia and had to be RA

because I responded to prednisone and another said

sometimes fibro does respond to prednisone. One told

me it was a pychological problem and another said it

was definitely an organic illness.

All I know is that the longer I'm still, the more I

hurt. I have severe vaginal pain on and off, general

muscle aches and pains, overwhelming fatigue, numbness

in my limbs if they're still for too long and any part

of my body that I put pressure on for more than a few

minutes starts to hurt. If I sleep on one side for

more than an hour, I wake up with 9-10 out of 10 level

pain. I sleep like one of those hot dogs at the Seven

Eleven that go round and around in that metal thingy.

Sometimes it feels like someone is sawing off my

limbs.

I was first diagnosed with spinal stenosis because of

the numbness, but the surgery just made the pain

spread to my whole body. I'm sorry if I'm not very

encouraging or informative. I'm still struggling to

understand it all myself.

Although there have been times where I wanted to end

it all, I have discovered many things that help me get

through it. I certainly have learned to live in prayer

a good deal of the time. I did finally find a doctor

to prescribe some stronger pain pills, although those

will run out one day and I'll be out of luck again. I

discovered that ice packs help my joints sometimes and

sometimes I sit on a vibrating pad in a chair which

helps my whole body pain. This group has really,

really helped because I stopped questioning my own

sanity when I found so many others with similar

problems. When I'm really bad I take whatever pills I

have available, sit on the vibrating pad and put on my

headphones and escape in music.

I'm sorry if this is no help to you personally. I

wish I had answers. Some day they'll discover the

true underlying organic problem that is causing our

nightmare and then we will be vindicated and hopefully

treated. Until then, we have to stick together and

share information.

Hopefully, a or can give you some real info.

I wish you all the best and hope that you will find

answers soon.

laura

--- Bobbi <mom2triplets@...> wrote:

> :

> Can you explain Fibromyalgia to me in Layman terms?

> I had an RF

> blood test done and it came back high, haven't been

> to the

> Rheumotologist yet (Dec. 5th). But, when I was

> getting a massage

> the other day the lady asked if I was diagnosed with

> Fibromyalgia.

> Of course at that time I had never heard of it

> before. Now I know

> that it is also an autoimmune disease like RA. She

> said that the

> two hard knots on my neck (one on each side)

> resembled

> Fibromyalgia.

>

> Also, if that IS what the knots were....could she

> have done more

> damage by rubbing the CRAP out of them to get them

> to go away?

> Because my neck is still not any better after a week

> on muscle

> relaxers. I know you are not a dr., just asking for

> your 2 cents.

> Thanks

> Bobbi

>

>

> >

> > > Hi, I am a 34 yr old mother of two and a wife.

> I

> > > also work full

> > > timein the internatl banking industry. I was

> > > diagnosed (finally!)

> > > with RA a little over a year ago and the disease

> has

> > > steadily

> > > progressed. I am having a hardtime finding a

> > > support group because of

> > > my age (it seems like everyone else is older and

> I

> > > feel out of

> > > place). I have been out of work for approx 2

> wks

> > > now because of my

> > > flare up. I seem to have a pharmacy in my

> medicine

> > > cabinet and i go

> > > for remicade treatments which do not seem to be

> > > helping. Is there

> > > someone I could talk to? I really need all the

> > > advice I can get in

> > > regards to coping with the disease and how I can

> > > help myself. Please

> > > don't think I am a whiner I am just very

> frustrated

> > > and need to find

> > > some alternative ways to help myself.

> > >

> > > Thanks,

> > >

> > > Ruthie

> > >

> > >

> > >

> > >

> > >

> > >

> >

> >

> >

> >

> > __________________________________

> > FareChase: Search multiple travel sites in

> one click.

> > http://farechase.

> >

>

>

>

>

>

>

>

__________________________________

- PC Magazine Editors' Choice 2005

http://mail.

[Guest guest]

Dear Bobbi,

The truth is I don't think anyone really knows what

fibromyalgia is. It certainly seems a mystery to the

dozen doctors I've seen since waking up one morning in

severe pain almost two years ago and never fully

recovering. I once made a chart that listed the

medical professionals I've seen and what they told me

in answer to about ten questions I've been

asking--like how damaging is it to be on pain

meds?--and there wasn't a single question where two

doctors didn't directly contradict each other. One

said I couldn't have fibro because I didn't have

tender points, and another one said I certainly could.

One doctor said pain meds were devasting and another

said that they really weren't dangerous at all. One

said it couldn't be fibromyalgia and had to be RA

because I responded to prednisone and another said

sometimes fibro does respond to prednisone. One told

me it was a pychological problem and another said it

was definitely an organic illness.

All I know is that the longer I'm still, the more I

hurt. I have severe vaginal pain on and off, general

muscle aches and pains, overwhelming fatigue, numbness

in my limbs if they're still for too long and any part

of my body that I put pressure on for more than a few

minutes starts to hurt. If I sleep on one side for

more than an hour, I wake up with 9-10 out of 10 level

pain. I sleep like one of those hot dogs at the Seven

Eleven that go round and around in that metal thingy.

Sometimes it feels like someone is sawing off my

limbs.

I was first diagnosed with spinal stenosis because of

the numbness, but the surgery just made the pain

spread to my whole body. I'm sorry if I'm not very

encouraging or informative. I'm still struggling to

understand it all myself.

Although there have been times where I wanted to end

it all, I have discovered many things that help me get

through it. I certainly have learned to live in prayer

a good deal of the time. I did finally find a doctor

to prescribe some stronger pain pills, although those

will run out one day and I'll be out of luck again. I

discovered that ice packs help my joints sometimes and

sometimes I sit on a vibrating pad in a chair which

helps my whole body pain. This group has really,

really helped because I stopped questioning my own

sanity when I found so many others with similar

problems. When I'm really bad I take whatever pills I

have available, sit on the vibrating pad and put on my

headphones and escape in music.

I'm sorry if this is no help to you personally. I

wish I had answers. Some day they'll discover the

true underlying organic problem that is causing our

nightmare and then we will be vindicated and hopefully

treated. Until then, we have to stick together and

share information.

Hopefully, a or can give you some real info.

I wish you all the best and hope that you will find

answers soon.

laura

--- Bobbi <mom2triplets@...> wrote:

> :

> Can you explain Fibromyalgia to me in Layman terms?

> I had an RF

> blood test done and it came back high, haven't been

> to the

> Rheumotologist yet (Dec. 5th). But, when I was

> getting a massage

> the other day the lady asked if I was diagnosed with

> Fibromyalgia.

> Of course at that time I had never heard of it

> before. Now I know

> that it is also an autoimmune disease like RA. She

> said that the

> two hard knots on my neck (one on each side)

> resembled

> Fibromyalgia.

>

> Also, if that IS what the knots were....could she

> have done more

> damage by rubbing the CRAP out of them to get them

> to go away?

> Because my neck is still not any better after a week

> on muscle

> relaxers. I know you are not a dr., just asking for

> your 2 cents.

> Thanks

> Bobbi

>

>

> >

> > > Hi, I am a 34 yr old mother of two and a wife.

> I

> > > also work full

> > > timein the internatl banking industry. I was

> > > diagnosed (finally!)

> > > with RA a little over a year ago and the disease

> has

> > > steadily

> > > progressed. I am having a hardtime finding a

> > > support group because of

> > > my age (it seems like everyone else is older and

> I

> > > feel out of

> > > place). I have been out of work for approx 2

> wks

> > > now because of my

> > > flare up. I seem to have a pharmacy in my

> medicine

> > > cabinet and i go

> > > for remicade treatments which do not seem to be

> > > helping. Is there

> > > someone I could talk to? I really need all the

> > > advice I can get in

> > > regards to coping with the disease and how I can

> > > help myself. Please

> > > don't think I am a whiner I am just very

> frustrated

> > > and need to find

> > > some alternative ways to help myself.

> > >

> > > Thanks,

> > >

> > > Ruthie

> > >

> > >

> > >

> > >

> > >

> > >

> >

> >

> >

> >

> > __________________________________

> > FareChase: Search multiple travel sites in

> one click.

> > http://farechase.

> >

>

>

>

>

>

>

>

__________________________________

- PC Magazine Editors' Choice 2005

http://mail.