Questions

[Guest guest]

Someryn wrote:

>

> I've tried to read as much as possible about FMS on the net but I keep coming

up with differing facts-- how can they be 'facts' if they differ... well, maybe

differ isn't the right word... ummm.. sometimes they exclude each >other.

I think the reason the " facts " differ is because different doctors have

different theories as to what is the cause/symptoms, and so they include

different things. I think the " born with it " is probably their way of

saying it may have a genetic component to it.

> Are you born with FMS? or does it manifest itself later in life?

I think it manifests itself later in life for some people (me if you say

mid thirties is later in life), while others have it as young kids.

There does seem to be a genetic component since a parent and a kid may

both have it, or several members of the families have it.

> I just have this gut feeling that I am dealing with FMS. Have any of you ever

had that feeling? That you -know- there's something wrong AND what >you're

dealing with... but you can't get a professional to listen?

I have this one all of the time. I went to my gp and told her a year

before I was diagnosed that I thought I had fibro. She didn't want to

worry about it then " because all you can do for it is make sure you have

enough sleep, and we're already working on that. " I think it's possible

I have several other problems, but because the doctors can't always see

numbers on tests, no one wants to diagnose me with them.

> Well, I'm about to see a new doctor and about to tell one what I think for the

first time and I'm a little egdy about it...

Good luck with your doctor.

Darcy

[Guest guest]

Someryn wrote:

>

> I've tried to read as much as possible about FMS on the net but I keep coming

up with differing facts-- how can they be 'facts' if they differ... well, maybe

differ isn't the right word... ummm.. sometimes they exclude each >other.

I think the reason the " facts " differ is because different doctors have

different theories as to what is the cause/symptoms, and so they include

different things. I think the " born with it " is probably their way of

saying it may have a genetic component to it.

> Are you born with FMS? or does it manifest itself later in life?

I think it manifests itself later in life for some people (me if you say

mid thirties is later in life), while others have it as young kids.

There does seem to be a genetic component since a parent and a kid may

both have it, or several members of the families have it.

> I just have this gut feeling that I am dealing with FMS. Have any of you ever

had that feeling? That you -know- there's something wrong AND what >you're

dealing with... but you can't get a professional to listen?

I have this one all of the time. I went to my gp and told her a year

before I was diagnosed that I thought I had fibro. She didn't want to

worry about it then " because all you can do for it is make sure you have

enough sleep, and we're already working on that. " I think it's possible

I have several other problems, but because the doctors can't always see

numbers on tests, no one wants to diagnose me with them.

> Well, I'm about to see a new doctor and about to tell one what I think for the

first time and I'm a little egdy about it...

Good luck with your doctor.

Darcy

[Guest guest]

Hi Fay,

I have similar symptoms and experience dizziness as well. I also have sharp pain

in ears, thought it was sinus related, but I have no other sinus symptoms. I

figured it may be from the medicine. Good luck at your appointment. Peg

Fay peanut200170570us@...> wrote:

Hugs to everyone

I have several questions. One is has anyone ever expereinced dizziness from

maybe so much pain? I have not been able turn my head certain ways because I get

really dizzy and feel lightheaded. I have stabbing pains in my ears and the back

of my head hurts. I have been have really severe pain in the back of my neck and

it radiates down to my shoulder blades and it burns so bad. Could it be that? I

even though it was the fluid pill causing this but I did not take it today and

it is still bad. I will not go to the doctor till Tuesday so any input would be

helpful. You know you have to go in there and help them to idagnose you with our

problem. I have another question.

About the palpations in your throat what is that?? I also have that there is a

bout six months but it goes and comes and it does not last long. I never told

the doc because I figured it was the fibro. About the dizziness I can't look

down or up I get really dizzy. It is like I have to keep my head very still and

at night it is worst. thanks Fay

---------------------------------

[Guest guest]

Hi Fay,

I have similar symptoms and experience dizziness as well. I also have sharp pain

in ears, thought it was sinus related, but I have no other sinus symptoms. I

figured it may be from the medicine. Good luck at your appointment. Peg

Fay peanut200170570us@...> wrote:

Hugs to everyone

I have several questions. One is has anyone ever expereinced dizziness from

maybe so much pain? I have not been able turn my head certain ways because I get

really dizzy and feel lightheaded. I have stabbing pains in my ears and the back

of my head hurts. I have been have really severe pain in the back of my neck and

it radiates down to my shoulder blades and it burns so bad. Could it be that? I

even though it was the fluid pill causing this but I did not take it today and

it is still bad. I will not go to the doctor till Tuesday so any input would be

helpful. You know you have to go in there and help them to idagnose you with our

problem. I have another question.

About the palpations in your throat what is that?? I also have that there is a

bout six months but it goes and comes and it does not last long. I never told

the doc because I figured it was the fibro. About the dizziness I can't look

down or up I get really dizzy. It is like I have to keep my head very still and

at night it is worst. thanks Fay

---------------------------------

[Guest guest]

Hi Fay,

I have similar symptoms and experience dizziness as well. I also have sharp pain

in ears, thought it was sinus related, but I have no other sinus symptoms. I

figured it may be from the medicine. Good luck at your appointment. Peg

Fay peanut200170570us@...> wrote:

Hugs to everyone

I have several questions. One is has anyone ever expereinced dizziness from

maybe so much pain? I have not been able turn my head certain ways because I get

really dizzy and feel lightheaded. I have stabbing pains in my ears and the back

of my head hurts. I have been have really severe pain in the back of my neck and

it radiates down to my shoulder blades and it burns so bad. Could it be that? I

even though it was the fluid pill causing this but I did not take it today and

it is still bad. I will not go to the doctor till Tuesday so any input would be

helpful. You know you have to go in there and help them to idagnose you with our

problem. I have another question.

About the palpations in your throat what is that?? I also have that there is a

bout six months but it goes and comes and it does not last long. I never told

the doc because I figured it was the fibro. About the dizziness I can't look

down or up I get really dizzy. It is like I have to keep my head very still and

at night it is worst. thanks Fay

---------------------------------

[Guest guest]

Dear Fay,

I have asked about the hot searing shoulder girdle radiating pain

too, but I can add my two cents about the dizziness.

As to that, I sometimes experience dizziness after taking Neurotin,

but I don't always get it as an after-affect.

LOVE & LIGHT,

[Guest guest]

Dear Fay,

I have asked about the hot searing shoulder girdle radiating pain

too, but I can add my two cents about the dizziness.

As to that, I sometimes experience dizziness after taking Neurotin,

but I don't always get it as an after-affect.

LOVE & LIGHT,

[Guest guest]

Dear Fay,

I have asked about the hot searing shoulder girdle radiating pain

too, but I can add my two cents about the dizziness.

As to that, I sometimes experience dizziness after taking Neurotin,

but I don't always get it as an after-affect.

LOVE & LIGHT,

[Guest guest]

> My questions are: Successful Doctors in the US (West Coast preferably)

The Joint Replacement Institute at LA Orthopedic Hospital (Amstutz,

Schmalzried, and Beaule) has been doing resurfacings longer than

anyone else in the US. They've also published more than anyone in the

US, for whatever that's worth. You can check out their website at

http://www.jri-oh.com. I think Amstutz's paper on their first several

hundred resurfacings is in the " files " section of the surfacehippy

website. The only other West Coast resurfacing surgeon I know of is

Boyd in Oregon (Salem?). If there are others, I'm sure one or more of

their patients will chime in. Gross in South Carolina and Mont in

Baltimore have a number of very satisfied patients here. As do the

various resurfacing docs in Illinois, Texas, and Florida.

If you can't get the surgery covered by insurance (a problem since

this is still an " investigative " procedure according to the FDA), you

may wish to check out the UK or Belgium.

> What determines when enough is enough -

I know

> that is individual but I am struggling with saying OK it's time.

Sooner is better than later. Successful resurfacing depends on having

enough good bone to support the implant. If you wait too long, wear

and extensive cyst formation may make the surgery impossible. Note

that a lot of this is dependent on the experience of the surgeon. The

European docs will often take patients that, for whateve reason, are

rejected by US surgeons. In other words, if you're turned down in the

US you should have your X-rays evaluated by one of the Europeans

before you give up.

How bad is your dysplasia? The BHR implant (not available in the US)

has a special " dysplasia cup " which is designed for patients with

severe dysplasia. If your dysplasia is bad enough, you may have to go

outside the US.

Steve

[Guest guest]

Throw in Dr Ed Sparling in Vancouver, WA who trained in LA with Amstutz.

[Guest guest]

> My questions are: Successful Doctors in the US> (West Coast preferably)

Dr. Boyd in Salem OR did both of my hips when I was 40. I was severely

bilaterally dysplastic. Nearly three years later, and I am thrilled with my

hips. I was at a rehearsal today, and needed to make a quick bathroom run. It

is a piece that I don't play much, so I ran for the bathroom, thinking if I

hurried, I could get back to my spot before I had to play. I ran back to

applause, as most of these people had never seen me run before! I've known most

of them for over ten years!! One even said if she hadn't known me before my

surgeries, she never would have guessed that I'd had bad hips. We had a

rehearsal from 9-3 today, and other than lunch, I was on my feet for most of

that time-no pain! In fact, I'm going to be doing an aerobics step tape later

tonight. Another first for me!

> What determines when> enough is enough - I know> that is individual

but I am struggling with saying> OK it's time.

What determined it for me was the increasingly negative impact my hips were

having on my life. I could have lived with the pain, although it was definitely

bad. But, I couldn't live with the increasing disability. I had trained my

German Shepherd puppy as a service dog, just because he was so easy to train,

and he loved it. Thankfully, because I got to the point where life alone would

have been very difficult without him. I finally decided to have something done

now while I was still young. If I had to be disabled, I rathered it would be

when I was older and didn't have so much energy instead of now, which are the

best years of my life so far.

Since my hips were done, I've hugely increased my range of motion, done a lot

more traveling (went hiking in Puerto Rico and snorkeling in the Caribbean while

still on crutches), started dating again, and have a list of things I either

have never done, or haven't been able to do in a long time. On the list are

things like learning to dance, roller skating, scuba diving... Sadly my German

Shepherd passed away suddenly about a year and a half ago. Thankfully I didn't

need him as a service dog anymore, as the one I have now has no aptitude for it.

In fact, she would probably be the first one to knock me over!

Cindy

C+ 5/25/01 and 6/28/01

_______________________________________________

[Guest guest]

> Hi!

> I am new to all this and have been reading all your messages for

> about one week. I am impressed by all the information shared.

> Three years ago 2 different OS told me that I was bone on bone

> at the hips. Of course, this explained the pain I had been

> experiencing even when walking short distances. At any rate,

> getting into my mini-van is difficult and painful, I cannot walk

> more than 1/4 mile without experiencing excruciating pain....but...

> I can still ride my bicycle for 50 miles or more.

> I do not remember how I first became aware of hip resurfacing but

> after some research it seems to be the way to go for me. I'm 56

> and have always been very active. My main question is this:

> most of the stories I read about here involve going to England

> and Belgium for the resurfacing procedure, even though there are

> OS doing the procedure here in the US. Why? Is it just the greater

> amount of experience?

> Thanks,

> DJ

-

1 word answer for you - INSURANCE. It always comes down to money

doesn't it. Most folks in the US cant get their ins. companies to

pay for the procedure because the device and the procedure are NOT

FDA Approved. Therefore, depending where you go...the surgery could

cost between $25,000 and $50,000 US$ (big money). It is much more

cost effective to go to Europe, even when considering the travel,

etc...

If you can afford it, or your ins. company will pick up the

tab....there is truly no reason to go outside of this wonderful

country whatsoever (some may argue with me). In my humble opinion,

Doctors, experience, hospitals, devices, care, etc...are first class

in the good ole US. For what its worth, I went to the JRI in los

angeles, DR Schmalzried and wouldn't change 1 thing that I did.

Larry

[Guest guest]

> Hi!

> I am new to all this and have been reading all your messages for

> about one week. I am impressed by all the information shared.

> Three years ago 2 different OS told me that I was bone on bone

> at the hips. Of course, this explained the pain I had been

> experiencing even when walking short distances. At any rate,

> getting into my mini-van is difficult and painful, I cannot walk

> more than 1/4 mile without experiencing excruciating pain....but...

> I can still ride my bicycle for 50 miles or more.

> I do not remember how I first became aware of hip resurfacing but

> after some research it seems to be the way to go for me. I'm 56

> and have always been very active. My main question is this:

> most of the stories I read about here involve going to England

> and Belgium for the resurfacing procedure, even though there are

> OS doing the procedure here in the US. Why? Is it just the greater

> amount of experience?

> Thanks,

> DJ

-

1 word answer for you - INSURANCE. It always comes down to money

doesn't it. Most folks in the US cant get their ins. companies to

pay for the procedure because the device and the procedure are NOT

FDA Approved. Therefore, depending where you go...the surgery could

cost between $25,000 and $50,000 US$ (big money). It is much more

cost effective to go to Europe, even when considering the travel,

etc...

If you can afford it, or your ins. company will pick up the

tab....there is truly no reason to go outside of this wonderful

country whatsoever (some may argue with me). In my humble opinion,

Doctors, experience, hospitals, devices, care, etc...are first class

in the good ole US. For what its worth, I went to the JRI in los

angeles, DR Schmalzried and wouldn't change 1 thing that I did.

Larry

[Guest guest]

> Hi!

> I am new to all this and have been reading all your messages for

> about one week. I am impressed by all the information shared.

> Three years ago 2 different OS told me that I was bone on bone

> at the hips. Of course, this explained the pain I had been

> experiencing even when walking short distances. At any rate,

> getting into my mini-van is difficult and painful, I cannot walk

> more than 1/4 mile without experiencing excruciating pain....but...

> I can still ride my bicycle for 50 miles or more.

> I do not remember how I first became aware of hip resurfacing but

> after some research it seems to be the way to go for me. I'm 56

> and have always been very active. My main question is this:

> most of the stories I read about here involve going to England

> and Belgium for the resurfacing procedure, even though there are

> OS doing the procedure here in the US. Why? Is it just the greater

> amount of experience?

> Thanks,

> DJ

-

1 word answer for you - INSURANCE. It always comes down to money

doesn't it. Most folks in the US cant get their ins. companies to

pay for the procedure because the device and the procedure are NOT

FDA Approved. Therefore, depending where you go...the surgery could

cost between $25,000 and $50,000 US$ (big money). It is much more

cost effective to go to Europe, even when considering the travel,

etc...

If you can afford it, or your ins. company will pick up the

tab....there is truly no reason to go outside of this wonderful

country whatsoever (some may argue with me). In my humble opinion,

Doctors, experience, hospitals, devices, care, etc...are first class

in the good ole US. For what its worth, I went to the JRI in los

angeles, DR Schmalzried and wouldn't change 1 thing that I did.

Larry

[Guest guest]

Experience on the order of about 5 or 6:1 plus the insurance denial

game here in the US. The BHR was born in UK and embraced in Belgium.

Cost in Belgium is maybe half of what it is here; UK maybe 1/3 less?

Also recovery which of course is variable but generally seems faster

among Belgian hippies. You're my age with a similar activity level.

Your biking, etc will get harder as your hips worsen. Wait only as

long as you need to to line up a resurf site and no longer. The better

your overall condition going into surgery, the faster and less

difficult your recovery is likely to be.

Good luck!

> Hi!

> I am new to all this and have been reading all your messages for

> about one week. I am impressed by all the information shared.

> Three years ago 2 different OS told me that I was bone on bone

> at the hips. Of course, this explained the pain I had been

> experiencing even when walking short distances. At any rate,

> getting into my mini-van is difficult and painful, I cannot walk

> more than 1/4 mile without experiencing excruciating pain....but...

> I can still ride my bicycle for 50 miles or more.

> I do not remember how I first became aware of hip resurfacing but

> after some research it seems to be the way to go for me. I'm 56

> and have always been very active. My main question is this:

> most of the stories I read about here involve going to England

> and Belgium for the resurfacing procedure, even though there are

> OS doing the procedure here in the US. Why? Is it just the greater

> amount of experience?

> Thanks,

> DJ

[Guest guest]

Experience on the order of about 5 or 6:1 plus the insurance denial

game here in the US. The BHR was born in UK and embraced in Belgium.

Cost in Belgium is maybe half of what it is here; UK maybe 1/3 less?

Also recovery which of course is variable but generally seems faster

among Belgian hippies. You're my age with a similar activity level.

Your biking, etc will get harder as your hips worsen. Wait only as

long as you need to to line up a resurf site and no longer. The better

your overall condition going into surgery, the faster and less

difficult your recovery is likely to be.

Good luck!

> Hi!

> I am new to all this and have been reading all your messages for

> about one week. I am impressed by all the information shared.

> Three years ago 2 different OS told me that I was bone on bone

> at the hips. Of course, this explained the pain I had been

> experiencing even when walking short distances. At any rate,

> getting into my mini-van is difficult and painful, I cannot walk

> more than 1/4 mile without experiencing excruciating pain....but...

> I can still ride my bicycle for 50 miles or more.

> I do not remember how I first became aware of hip resurfacing but

> after some research it seems to be the way to go for me. I'm 56

> and have always been very active. My main question is this:

> most of the stories I read about here involve going to England

> and Belgium for the resurfacing procedure, even though there are

> OS doing the procedure here in the US. Why? Is it just the greater

> amount of experience?

> Thanks,

> DJ

[Guest guest]

Experience on the order of about 5 or 6:1 plus the insurance denial

game here in the US. The BHR was born in UK and embraced in Belgium.

Cost in Belgium is maybe half of what it is here; UK maybe 1/3 less?

Also recovery which of course is variable but generally seems faster

among Belgian hippies. You're my age with a similar activity level.

Your biking, etc will get harder as your hips worsen. Wait only as

long as you need to to line up a resurf site and no longer. The better

your overall condition going into surgery, the faster and less

difficult your recovery is likely to be.

Good luck!

> Hi!

> I am new to all this and have been reading all your messages for

> about one week. I am impressed by all the information shared.

> Three years ago 2 different OS told me that I was bone on bone

> at the hips. Of course, this explained the pain I had been

> experiencing even when walking short distances. At any rate,

> getting into my mini-van is difficult and painful, I cannot walk

> more than 1/4 mile without experiencing excruciating pain....but...

> I can still ride my bicycle for 50 miles or more.

> I do not remember how I first became aware of hip resurfacing but

> after some research it seems to be the way to go for me. I'm 56

> and have always been very active. My main question is this:

> most of the stories I read about here involve going to England

> and Belgium for the resurfacing procedure, even though there are

> OS doing the procedure here in the US. Why? Is it just the greater

> amount of experience?

> Thanks,

> DJ

[Guest guest]

In a message dated 4/14/2004 9:33:36 AM Pacific Daylight Time, tabby2@...

writes:

I am a little anxious over that not because of the outcome but because of the

pain and probably bruising I will get.

*************88

YOU MUST GO GET A MAMMOGRAM!

I put it off because of bad prior experiences too. I had a horrible scare a

couple of months ago that I would not wish on anyone. You need to have that

test no matter how much it may hurt.

Tell your MD to call the radiologist and inform him/her that you have EDS and

they need to handle you with kid gloves. THEY WILL I am sure but it IS UP TO

YOU to be sure that you inform them BEFORE you start the mammo. Just in case

(and even if) your MD does not contact the facility, be sure that you sit down

the technician and tell them about the EDS. Then be sure that they bring in

the radiologist into the discussion.

Patients are so shy about speaking their mind in these concerns. Do not be

afraid they will think you a sissy or something this is a real issue and should

be addressed as.

Debbi

[Guest guest]

Cheryl,

Lupus can affect your muscles. I currently don't have any organ

involvement, but all of my muscles are affected. Lupus can attack

any and all tissue in your body. Lupus also can be accompanied by

fibromyalgia which is very painful for your muscles. I have

both...just lucky I guess. Have your doctor check you for Fibro

also. Lupus doesn't usually come alone, it brings it's bad friends

too.

> Hi Everyone,

>

> I have a question for all of you. I read that Lupus does not affect

> large muscle groups, like back, neck, etc.... I have terrible neck,

> shoulder, and lower back pain, and I am wondering if it is because

of

> the lupus?

>

> Also, does anyone else have optic neuritis? Do you take medication

for

> it, other than steroid meds? I am terribly frustrated with my optic

> neuritis, my neuro-opthamologist doesn't want to treat it because it

> doesn't affect my vision. But the pain is terrible!

>

> I am so new at this.... I am currently waiting for my dr to call me

> back with results from my urinalysis, it seems they found

something! I

> know from the last one that my protein, WBC and bacteria were

high!

>

> Never a dull moment! Lots of hugs to everyone, and good wishes for

> pain-free (or at least pain-mild) days!

>

> Thanks everyone!

>

> Cheryl J in GA

[Guest guest]

Cheryl,

Lupus can affect your muscles. I currently don't have any organ

involvement, but all of my muscles are affected. Lupus can attack

any and all tissue in your body. Lupus also can be accompanied by

fibromyalgia which is very painful for your muscles. I have

both...just lucky I guess. Have your doctor check you for Fibro

also. Lupus doesn't usually come alone, it brings it's bad friends

too.

> Hi Everyone,

>

> I have a question for all of you. I read that Lupus does not affect

> large muscle groups, like back, neck, etc.... I have terrible neck,

> shoulder, and lower back pain, and I am wondering if it is because

of

> the lupus?

>

> Also, does anyone else have optic neuritis? Do you take medication

for

> it, other than steroid meds? I am terribly frustrated with my optic

> neuritis, my neuro-opthamologist doesn't want to treat it because it

> doesn't affect my vision. But the pain is terrible!

>

> I am so new at this.... I am currently waiting for my dr to call me

> back with results from my urinalysis, it seems they found

something! I

> know from the last one that my protein, WBC and bacteria were

high!

>

> Never a dull moment! Lots of hugs to everyone, and good wishes for

> pain-free (or at least pain-mild) days!

>

> Thanks everyone!

>

> Cheryl J in GA

[Guest guest]

Cheryl,

Lupus can affect your muscles. I currently don't have any organ

involvement, but all of my muscles are affected. Lupus can attack

any and all tissue in your body. Lupus also can be accompanied by

fibromyalgia which is very painful for your muscles. I have

both...just lucky I guess. Have your doctor check you for Fibro

also. Lupus doesn't usually come alone, it brings it's bad friends

too.

> Hi Everyone,

>

> I have a question for all of you. I read that Lupus does not affect

> large muscle groups, like back, neck, etc.... I have terrible neck,

> shoulder, and lower back pain, and I am wondering if it is because

of

> the lupus?

>

> Also, does anyone else have optic neuritis? Do you take medication

for

> it, other than steroid meds? I am terribly frustrated with my optic

> neuritis, my neuro-opthamologist doesn't want to treat it because it

> doesn't affect my vision. But the pain is terrible!

>

> I am so new at this.... I am currently waiting for my dr to call me

> back with results from my urinalysis, it seems they found

something! I

> know from the last one that my protein, WBC and bacteria were

high!

>

> Never a dull moment! Lots of hugs to everyone, and good wishes for

> pain-free (or at least pain-mild) days!

>

> Thanks everyone!

>

> Cheryl J in GA

[Guest guest]

Hi ,

So how do you know if you have organ involvement? I also didn't

realize that all of your muscles could be affected. I have terrible

pain in my neck, back, shoulders, hands, wrists, knees, feet and ankles.

Only the pain isn't unbearable. At times it is, but not usually.

And, how does a dr check for fibromyalgia?

Thanks for your input! I really appreciate it.

Cheryl J in GA

Message: 10

Date: Mon, 17 May 2004 17:06:19 -0000

Subject: Re: Questions

Cheryl,

Lupus can affect your muscles. I currently don't have any organ

involvement, but all of my muscles are affected. Lupus can attack

any and all tissue in your body. Lupus also can be accompanied by

fibromyalgia which is very painful for your muscles. I have

both...just lucky I guess. Have your doctor check you for Fibro

also. Lupus doesn't usually come alone, it brings it's bad friends

too.

[Guest guest]

Hi ,

So how do you know if you have organ involvement? I also didn't

realize that all of your muscles could be affected. I have terrible

pain in my neck, back, shoulders, hands, wrists, knees, feet and ankles.

Only the pain isn't unbearable. At times it is, but not usually.

And, how does a dr check for fibromyalgia?

Thanks for your input! I really appreciate it.

Cheryl J in GA

Message: 10

Date: Mon, 17 May 2004 17:06:19 -0000

Subject: Re: Questions

Cheryl,

Lupus can affect your muscles. I currently don't have any organ

involvement, but all of my muscles are affected. Lupus can attack

any and all tissue in your body. Lupus also can be accompanied by

fibromyalgia which is very painful for your muscles. I have

both...just lucky I guess. Have your doctor check you for Fibro

also. Lupus doesn't usually come alone, it brings it's bad friends

too.

[Guest guest]

Hi ,

So how do you know if you have organ involvement? I also didn't

realize that all of your muscles could be affected. I have terrible

pain in my neck, back, shoulders, hands, wrists, knees, feet and ankles.

Only the pain isn't unbearable. At times it is, but not usually.

And, how does a dr check for fibromyalgia?

Thanks for your input! I really appreciate it.

Cheryl J in GA

Message: 10

Date: Mon, 17 May 2004 17:06:19 -0000

Subject: Re: Questions

Cheryl,

Lupus can affect your muscles. I currently don't have any organ

involvement, but all of my muscles are affected. Lupus can attack

any and all tissue in your body. Lupus also can be accompanied by

fibromyalgia which is very painful for your muscles. I have

both...just lucky I guess. Have your doctor check you for Fibro

also. Lupus doesn't usually come alone, it brings it's bad friends

too.

[Guest guest]

I have terrible pain in my back, shoulders and kneck. With me they

diagnosed Fibromyalgia and called it a day. My back can get so bad

that I'm literally paralyzed from the chest down. If anyone else

reads this, is that seriously the Fibro? It just seems a bit extreme.

Shelby

> Hi Everyone,

>

> I have a question for all of you. I read that Lupus does not affect

> large muscle groups, like back, neck, etc.... I have terrible neck,

> shoulder, and lower back pain, and I am wondering if it is because

of

> the lupus?

>

> Also, does anyone else have optic neuritis? Do you take medication

for

> it, other than steroid meds? I am terribly frustrated with my optic

> neuritis, my neuro-opthamologist doesn't want to treat it because it

> doesn't affect my vision. But the pain is terrible!

>

> I am so new at this.... I am currently waiting for my dr to call me

> back with results from my urinalysis, it seems they found

something! I

> know from the last one that my protein, WBC and bacteria were

high!

>

> Never a dull moment! Lots of hugs to everyone, and good wishes for

> pain-free (or at least pain-mild) days!

>

> Thanks everyone!

>

> Cheryl J in GA