Re: Scoliosis AND Fibromyalgia

[Guest guest]

sorry for the lateness of this reply. I have fibromyalgia and late-onset

complication of scoliosis (Flatback Syndrome). I find what helps me figure

out the symptoms and what the cause might be, is to keep a diary of not only

your pain level, where it hurts, etc., but also items like weather

conditions, your activities and maybe even the food that you've had. I also

had some test done by a neurology's for any and what degree of nerve damage.

They did discover that I had carpel tunnel in my right hand, which was

bothering me, and I thought it had to do with the spine. I've since had

surgery on my hand and the majority of the tingling has gone.The rest of my

pain problems, I can contribute to not pacing myself according to my

condition and weather. Because of the drugs, that I am taking, I have

stomach problems which increase the pain level when I eat certain foods

(especially when the pain level is up).

Having multiple conditions, does complicate trying to find some sort of

solution that is liveable. We will never have the life that we once had (and

most don't with aging alone), but we can usually find something that we give

us a good quality of life, within the condition's limits. I hope you are

able to find that for yourself.

This is what I have discovered has worked for me and I hope it gives you

something to work for you.

Llweyn

_____

From: Scoliosis Treatment

[mailto:Scoliosis Treatment ] On Behalf Of debbie brickley

Sent: December 16, 2007 4:16 PM

Subject: Scoliosis AND Fibromyalgia

Hi everyone; I just want to know: how many folks out there think they have

or have been diagnosed with fibrolmyalgia on top of their scoliosis? I am

having a terrible period of all over body pain and it seems familiar to

other times in the last couple of years when my pain just grows and grows

and morphs from my usual sites to all over my body. I have tingling in my

extremities, swollen and tender joints and deep muscular pain. I can't for

the life of me figure out what's going on. Not all the time but every few

months. I'm wondering if my scoliosis pain exacerbates this whole other

syndrome that's driving me crazy. Any thoughts?

Debbie

[Guest guest]

Thanks for your response about fibro. My GP discounts the fibro theory because I

have these flare-ups, maybe a few times a year, and he thinks fibro doesn't

usually present that way. My last was about 3-4 weeks ago; I'm doing well since

and recovering from my 2 level lumbar fusion due to my scoliosis curvature. Who

knows why the body acts like it does? I just know that when I'm in the middle

of the one of those flare-ups, I feel awful all over and want some answers.

Thanks again for your time.

Debbie

Llweyn Friars <mad.monk@...> wrote:

sorry for the lateness of this reply. I have fibromyalgia and

late-onset

complication of scoliosis (Flatback Syndrome). I find what helps me figure

out the symptoms and what the cause might be, is to keep a diary of not only

your pain level, where it hurts, etc., but also items like weather

conditions, your activities and maybe even the food that you've had. I also

had some test done by a neurology's for any and what degree of nerve damage.

They did discover that I had carpel tunnel in my right hand, which was

bothering me, and I thought it had to do with the spine. I've since had

surgery on my hand and the majority of the tingling has gone.The rest of my

pain problems, I can contribute to not pacing myself according to my

condition and weather. Because of the drugs, that I am taking, I have

stomach problems which increase the pain level when I eat certain foods

(especially when the pain level is up).

Having multiple conditions, does complicate trying to find some sort of

solution that is liveable. We will never have the life that we once had (and

most don't with aging alone), but we can usually find something that we give

us a good quality of life, within the condition's limits. I hope you are

able to find that for yourself.

This is what I have discovered has worked for me and I hope it gives you

something to work for you.

Llweyn

_____

From: Scoliosis Treatment

[mailto:Scoliosis Treatment ] On Behalf Of debbie brickley

Sent: December 16, 2007 4:16 PM

Subject: Scoliosis AND Fibromyalgia

Hi everyone; I just want to know: how many folks out there think they have

or have been diagnosed with fibrolmyalgia on top of their scoliosis? I am

having a terrible period of all over body pain and it seems familiar to

other times in the last couple of years when my pain just grows and grows

and morphs from my usual sites to all over my body. I have tingling in my

extremities, swollen and tender joints and deep muscular pain. I can't for

the life of me figure out what's going on. Not all the time but every few

months. I'm wondering if my scoliosis pain exacerbates this whole other

syndrome that's driving me crazy. Any thoughts?

Debbie

[Guest guest]

Regarding Lyrica being prescribed for fibromyalgia, I

posted about a woman who was taking it. Well, her

daughter just told me that it's a difference between

night & day. Her mother is up & doing things that she

hasn't been able to do in years. I now am seeing it

advertised on tv. I don't know what the cost of it is

or what type of insurance, if any, you have to cover

it. If I ever go into a severe flare again, I will

consider taking it myself.

I must pace myself & not overdo. Sometimes when I feel

decent I still overdo simply because there's so much

I've not been able to do since I'm going to be having

heart surgery again soon. Since I also suffer from

migraines & arthritis I have to pay attention to food,

weather systems, & sleep. ~Moonbeam

________________________________________________________________________________\

____

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[Guest guest]

Debbie

It is obvious that your GP doesn't have a clue to fibromyalgia. The flares

can happen exactly as you describe...several times a year worse than others.

The bible of FMS is Fibroyalgia and Chronic Myofascial Pain Syndrome a

Survival Manual by Dr. Devin Starlanyl. She is a doctor who has FMS and it is

well researched in her books. Stress the doctor treats your symptoms if he

doesn't 'believe' in the condition.

Stress can be one of the contributing factors to flares (as well as weather,

diet, etc.)

Jolene

**************Start the year off right. Easy ways to stay in shape.

http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

[Guest guest]

Thanks, Jolene, for your response. From reading the comments on this chat, I've

been realizing that Fibro does seem to occur in flare-ups. My doctor is a

holistic, alternative MD, but he sure doesn't read me right about this. He has

helped alot with pain control before and after my surgery, but I wonder if I

should ask for a referral to a rheumatologist. What do you think. And I'll try

to find that book.

Debbie

Buttonjo@... wrote:

Debbie

It is obvious that your GP doesn't have a clue to fibromyalgia. The flares

can happen exactly as you describe...several times a year worse than others.

The bible of FMS is Fibroyalgia and Chronic Myofascial Pain Syndrome a

Survival Manual by Dr. Devin Starlanyl. She is a doctor who has FMS and it is

well researched in her books. Stress the doctor treats your symptoms if he

doesn't 'believe' in the condition.

Stress can be one of the contributing factors to flares (as well as weather,

diet, etc.)

Jolene

**************Start the year off right. Easy ways to stay in shape.

http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

[Guest guest]

Debbie,

Not to trample all over your GP, but does he believe

in the legitimacy of fibro? I've encountered some who

don't. It could be that you do have it & have since

the beginning of these periodic episodes. Or they

could be episodes of some other syndrome. Have you

asked other doctors about these symptoms? ~Moonbeam

________________________________________________________________________________\

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[Guest guest]

Yes, I have but you know traditional medicine: I had a GP before this one, that

wouldn't refer me out to ANY specialities and just didn't seem to believe that I

meant it about my pain and muscular problems. MY problem is that I seem to

forget about this between the flare-ups, because just dealing with rehabbing and

my continued thoracic curvature, and then I have an episode and it's like

" here's this monster again and why didn't I get someone to believe me and what's

going on! " and then I get proactive again. It's been 3-4 weeks now and I've

forgotten a little about how BAD I feel when this comes over me. Alternative

medicine people understand but traditional medicine, no.

L Howell <moonbeamblessings@...> wrote: Debbie,

Not to trample all over your GP, but does he believe

in the legitimacy of fibro? I've encountered some who

don't. It could be that you do have it & have since

the beginning of these periodic episodes. Or they

could be episodes of some other syndrome. Have you

asked other doctors about these symptoms? ~Moonbeam

__________________________________________________________

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know-it-all with Mobile. Try it now.

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[Guest guest]

Yes, Debbie...do ask for a referral to a rheumatologist. It can't hurt and

then maybe your GP will believe.

BYW, my fibro is moderate but manageable mostly. The worse parts for me

(the muscle aches I can live with most of the time) is being allergic to meds.

My list grows yearly...pain meds to antibiotics. Also fibro shows up in

blood draws. I'm a 'hard draw' classification....very small, rolling veins.

The

fibro tightens our skin. It takes a extremely talented phlebotomist to get

blood from me. I also ask for butterfly needles or the very smallest and

getting from the wrist is usually mode. I know two gals that always get my

draws

at Kaiser and ask for them by name. Having blood drawn prior to surgery was

almost impossible until I found a former pediatric phlebotomist at the blood

bank. If this is a problem for you always ask for the one with the most

years in the business or a former ped phlebotomist.

Recovering from surgery took longer because of my fibro, but knowing my body

helped to pace myself. The worse part for me in fibro besides the meds and

blood draws is the total exhaustion that can occur at times. I always liken

it to having a 300 lb sumo wrestler sitting on my chest daring me to breathe.

(apoligies to any sumos out there). Luckily over the years of living with

fibro that doesn't occur very often.

I also have regular body work done by a former PT in myofascial release that

has helped my body tremendously with fibro. Again, finding the most

talented in the area to help takes a lot of networking and asking around.

Jolene

**************Start the year off right. Easy ways to stay in shape.

http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

[Guest guest]

I have read Devin's book, Debbie. I checked it out

from my local library years ago. Maybe your library

will be fortunate enough to have it. You could show

your doctor what this doctor who has the condition

says about it, or you could just get a referral for

another doctor.

I think seeing another doctor would be a good idea. At

least for the diagnosis & treatment protocol. You can

always have your GP prescribe the same meds later on

if he's willing. Or you can have the fibro doc treat u

in addition to your regular doc. Heck, you know that.

~Moonbeam

________________________________________________________________________________\

____

Be a better friend, newshound, and

know-it-all with Mobile. Try it now.

http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

[Guest guest]

Thanks for the info. I'm seeing a PT who also does cranio-sacral work; and I

just started yesterday with a woman who specializes in Egoscue Postural therapy.

It's a system of exercises especially designed for each person due to their

particular postural dysfunctions, and of course, I have quite a few. I'm going

slow because I still have so many postop limitations. But I can see that this

might really help.

Debbie

Buttonjo@... wrote:

Yes, Debbie...do ask for a referral to a rheumatologist. It can't hurt

and

then maybe your GP will believe.

BYW, my fibro is moderate but manageable mostly. The worse parts for me

(the muscle aches I can live with most of the time) is being allergic to meds.

My list grows yearly...pain meds to antibiotics. Also fibro shows up in

blood draws. I'm a 'hard draw' classification....very small, rolling veins. The

fibro tightens our skin. It takes a extremely talented phlebotomist to get

blood from me. I also ask for butterfly needles or the very smallest and

getting from the wrist is usually mode. I know two gals that always get my draws

at Kaiser and ask for them by name. Having blood drawn prior to surgery was

almost impossible until I found a former pediatric phlebotomist at the blood

bank. If this is a problem for you always ask for the one with the most

years in the business or a former ped phlebotomist.

Recovering from surgery took longer because of my fibro, but knowing my body

helped to pace myself. The worse part for me in fibro besides the meds and

blood draws is the total exhaustion that can occur at times. I always liken

it to having a 300 lb sumo wrestler sitting on my chest daring me to breathe.

(apoligies to any sumos out there). Luckily over the years of living with

fibro that doesn't occur very often.

I also have regular body work done by a former PT in myofascial release that

has helped my body tremendously with fibro. Again, finding the most

talented in the area to help takes a lot of networking and asking around.

Jolene

**************Start the year off right. Easy ways to stay in shape.

http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

[Guest guest]

You know, I've lost the name of that book in all these layers of emails. Can you

repeat it for me. Thanks, Debbie

L Howell <moonbeamblessings@...> wrote: I have read Devin's book,

Debbie. I checked it out

from my local library years ago. Maybe your library

will be fortunate enough to have it. You could show

your doctor what this doctor who has the condition

says about it, or you could just get a referral for

another doctor.

I think seeing another doctor would be a good idea. At

least for the diagnosis & treatment protocol. You can

always have your GP prescribe the same meds later on

if he's willing. Or you can have the fibro doc treat u

in addition to your regular doc. Heck, you know that.

~Moonbeam

__________________________________________________________

Be a better friend, newshound, and

know-it-all with Mobile. Try it now.

http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

[Guest guest]

Debbie,

I know what you're saying about them not referring you

& discounting your pain. Also I know what you mean

about the pain being on the back burner & you kinda

'forget' about it until it screams at you 'here I AM

LADY!' It took me years for my doc to believe me about

my pain. I was in agony! After 4 yrs he referred me to

a pain clinic, but then it took a year or 2 to find

one that would accept me. So more waiting, wasting my

life. If it were the doctors in pain, it would be a

different story, we all know that. Once you find a doc

who 'gets' you & is willing to listen to you then

you've struck gold. Their ego is not invested in your

seeing someone else, they just want to help you find

something that works.

Also, some doctors seem to put you in a box, label

you. Like with you, since you have scoliosis ANY back

pain (cervical, thoracic, lumbar) is going to be

attributed to the scoliosis. They won't even search

for anything else because they see the scoliosis & say

well, there's your problem, you've just got to learn

to deal with the pain. Meanwhile you could have a

ruptured disc, broken hardware, arthritis, autoimmune

disorder, you name it. I've dealt with being in the

box when it comes to scoliosis and have had to talk

til I'm blue in the face sometimes. ~Moonbeam

________________________________________________________________________________\

____

Looking for last minute shopping deals?

Find them fast with Search.

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[Guest guest]

Janet,

I do hope those other meds on your list were the ones

causing your sleepiness & that the Lyrica will help

you at the dosage you're currently taking. Keep us

informed about how you're doing. I'd love to hear how

the Lyrica works for you. ~Moonbeam

________________________________________________________________________________\

____

Never miss a thing. Make your home page.

http://www./r/hs

[Guest guest]

Jolene,

I was never a 'hard draw' until after my stroke. I

attributed it to the dilation & constriction of my

blood vessels. I never thought about fibro being a

factor in getting a vein. I'm 42, have had 13

surgeries, so I've been stuck thousands of time with

no problem. Now it's a problem.

The last time I was in the hospital I had to wait for

somebody from the cath lab to come change my IV & take

a vial of blood. The blood was to be taken every 4

hours & she showed up 6 hours after they requested

her. I was also on heparin at the time, so my veins

were sore. The IV site skin had torn & blood was all

over my gown, sheets, everything. The person from the

cath lab had no problem whatsoever getting a vein in

the other arm where the other nurses wouldn't dare

attempt. She kinda sd 'hmmph, that was no problem. I

don't know why they couldn't get it.' I told her

'because they aren't you' ~Moonbeam

________________________________________________________________________________\

____

Never miss a thing. Make your home page.

http://www./r/hs

[Guest guest]

> Thanks for your caring reply. something is really working well. I

feel like a new person. Worked 12 hour shift today--am tired but not

hurting much at all which seems like a miracle. Have not experienced

any sleepiness so far. Hard to believe the Lyrica kicked in so soon

but I think that may be why I feel so much better. Will keep you

updated on how I'm doing. Wishing you all pain-free days.

Janet

> Janet,

> I do hope those other meds on your list were the ones

> causing your sleepiness & that the Lyrica will help

> you at the dosage you're currently taking. Keep us

> informed about how you're doing. I'd love to hear how

> the Lyrica works for you. ~Moonbeam

>

>

>

______________________________________________________________________

______________

> Never miss a thing. Make your home page.

> http://www./r/hs

>

[Guest guest]

I had the opposite experience about my back pain. They would NOT believe my

scoliosis was causing my pain. Of course they thought I was exaggerating, but

they ran every test they could think of to figure out why I'd be in pain. They

said that scoliosis doesn't cause pain. Right. Interesting that so many of us

with it have similar symptoms. It's gotten much better over the years, but it

just seems that a woman with back pain automatically falls into the catagory of

being weak, whiny, looking for attention or a way to get out of working, or

whatever. I have had so much negative interaction in regards to my pain. If any

of those people had an inkling of how much I've suffered and kept going....but

that's the way it is. I wonder if men with scoliosis pain get as much crap and

disbelief. Men?

Re: Scoliosis AND Fibromyalgia

Debbie,

I know what you're saying about them not referring you

& discounting your pain. Also I know what you mean

about the pain being on the back burner & you kinda

'forget' about it until it screams at you 'here I AM

LADY!' It took me years for my doc to believe me about

my pain. I was in agony! After 4 yrs he referred me to

a pain clinic, but then it took a year or 2 to find

one that would accept me. So more waiting, wasting my

life. If it were the doctors in pain, it would be a

different story, we all know that. Once you find a doc

who 'gets' you & is willing to listen to you then

you've struck gold. Their ego is not invested in your

seeing someone else, they just want to help you find

something that works.

Also, some doctors seem to put you in a box, label

you. Like with you, since you have scoliosis ANY back

pain (cervical, thoracic, lumbar) is going to be

attributed to the scoliosis. They won't even search

for anything else because they see the scoliosis & say

well, there's your problem, you've just got to learn

to deal with the pain. Meanwhile you could have a

ruptured disc, broken hardware, arthritis, autoimmune

disorder, you name it. I've dealt with being in the

box when it comes to scoliosis and have had to talk

til I'm blue in the face sometimes. ~Moonbeam

____________ _________ _________ _________ _________ _________ _

Looking for last minute shopping deals?

Find them fast with Search. http://tools. search.. com/newsearch/

category. php?category= shopping

________________________________________________________________________________\

____

Be a better friend, newshound, and

know-it-all with Mobile. Try it now.

http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

[Guest guest]

Someone please tell me what Lyrica is!

Re: Scoliosis AND Fibromyalgia

> Thanks for your caring reply. something is really working well. I

feel like a new person. Worked 12 hour shift today--am tired but not

hurting much at all which seems like a miracle. Have not experienced

any sleepiness so far. Hard to believe the Lyrica kicked in so soon

but I think that may be why I feel so much better. Will keep you

updated on how I'm doing. Wishing you all pain-free days.

Janet

> Janet,

> I do hope those other meds on your list were the ones

> causing your sleepiness & that the Lyrica will help

> you at the dosage you're currently taking. Keep us

> informed about how you're doing. I'd love to hear how

> the Lyrica works for you. ~Moonbeam

>

>

>

____________ _________ _________ _________ _________ _________ _

____________ __

> Never miss a thing. Make your home page.

> http://www.. com/r/hs

>

________________________________________________________________________________\

____

Never miss a thing. Make your home page.

http://www./r/hs

[Guest guest]

I can't imagine that men drs treat men patients as poorly as they treat women.

Especially women in pain. After anterior/posterior fusion at the age of 45, I

went back to work after 6 months, full time as an ICU nurse. 12 hour shifts. It

was backbreaking work on a good day! But I loved my work and as I've said

before, a brief stint- 6 months- at desk work caused more pain that being on my

feet. But I worked very closely with one dr- he was a real buddy to the ICU

nurses. He knew all of us on a personal basis- about our families, etc. He knew

all about my fusion and the many problems I had. But when I had my incident when

I broke my rod and fusion and was in the worse pain I could imagine, he turned

into a total stranger! He acted like I was malingering! I was never late for

work, never never called in about my back except when I had to have the tops of

my rods cut down. I had a nerve pain so bad I could not move my right arm

forward. Not compatible with my work. But back to

the dr- he told me I needed to find " alternative " ways of taking care of my

pain. I had been to an acupuncturist and a chiropractor many times to try to

control my chronic pain. I went to a massage therapist as often as I could

afford it. This new pain was unlike any pain I had experienced. I kept telling

him that it felt like I was walking on broken bones. The dr did not listen. He

was hesitant to give me pain meds. When he got me to a low dose of MS Contin he

said he just could not prescribe anything more. I absolutely insisted that I be

sent to a pain clinic. I was very very blessed that I have found a place where

my problems are understood and addressed. I have not been back to the dr who I

thought I knew so well. It was equally hard to deal with the fact that I did not

have a correct diagnosis until a year and a half later. All I could say was that

I had pain that got much worse when I sat or stood for too long. I should not

have cared what others thought about me but

I will admit that I did. I can't count how many times I heard " my back bothers

me too. You just have to keep going " or " you have to put it out of your mind "

etc. It was very depressing at times. I feel so bad for anyone who has not found

a place of acceptance. I could not have survived in the pain I had initially. I

have learned so much from this group. And I have realized how many problems

others have in finding pain relief. It is a major issue with so many people. Of

course I had to go to NYC from SC for my surgery so I have sure had my

problems. But I feel really blessed. Good luck to everyone in finding your own

relief! And a dr who will treat you with respect and not like " it's all in your

head " . My BP goes up just thinking about it. Bea

Randie Meyer <taknitlite@...> wrote: I had

the opposite experience about my back pain. They would NOT believe my scoliosis

was causing my pain. Of course they thought I was exaggerating, but they ran

every test they could think of to figure out why I'd be in pain. They said that

scoliosis doesn't cause pain. Right. Interesting that so many of us with it have

similar symptoms. It's gotten much better over the years, but it just seems that

a woman with back pain automatically falls into the catagory of being weak,

whiny, looking for attention or a way to get out of working, or whatever. I have

had so much negative interaction in regards to my pain. If any of those people

had an inkling of how much I've suffered and kept going....but that's the way it

is. I wonder if men with scoliosis pain get as much crap and disbelief. Men?

Re: Scoliosis AND Fibromyalgia

Debbie,

I know what you're saying about them not referring you

& discounting your pain. Also I know what you mean

about the pain being on the back burner & you kinda

'forget' about it until it screams at you 'here I AM

LADY!' It took me years for my doc to believe me about

my pain. I was in agony! After 4 yrs he referred me to

a pain clinic, but then it took a year or 2 to find

one that would accept me. So more waiting, wasting my

life. If it were the doctors in pain, it would be a

different story, we all know that. Once you find a doc

who 'gets' you & is willing to listen to you then

you've struck gold. Their ego is not invested in your

seeing someone else, they just want to help you find

something that works.

Also, some doctors seem to put you in a box, label

you. Like with you, since you have scoliosis ANY back

pain (cervical, thoracic, lumbar) is going to be

attributed to the scoliosis. They won't even search

for anything else because they see the scoliosis & say

well, there's your problem, you've just got to learn

to deal with the pain. Meanwhile you could have a

ruptured disc, broken hardware, arthritis, autoimmune

disorder, you name it. I've dealt with being in the

box when it comes to scoliosis and have had to talk

til I'm blue in the face sometimes. ~Moonbeam

____________ _________ _________ _________ _________ _________ _

Looking for last minute shopping deals?

Find them fast with Search. http://tools. search.. com/newsearch/

category. php?category= shopping

__________________________________________________________

Be a better friend, newshound, and

know-it-all with Mobile. Try it now.

http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

[Guest guest]

I hear you Randie. I am a woman, but I had a friend, a radiologist tell me this

summer that scoliosis does not cause pain; that back pain is emotional! That

still pisses me off! I cant believe medical professionals can believe that. What

exactly do they think all those bones and muscles are doing to adapt to the

curvature. Now I just started a therapy regime called Egoscue which works on

dysfunctional posture as the source of pain and recommends individual exercise

regimes to correct and relieve the pain. It will take me awhile to get into it

because of my postop limitations. But I am encouraged. The difference between

this theory and the emotional theory regarding pain are so 180.

Debbie

Randie Meyer <taknitlite@...> wrote:

I had the opposite experience about my back pain. They would NOT

believe my scoliosis was causing my pain. Of course they thought I was

exaggerating, but they ran every test they could think of to figure out why I'd

be in pain. They said that scoliosis doesn't cause pain. Right. Interesting that

so many of us with it have similar symptoms. It's gotten much better over the

years, but it just seems that a woman with back pain automatically falls into

the catagory of being weak, whiny, looking for attention or a way to get out of

working, or whatever. I have had so much negative interaction in regards to my

pain. If any of those people had an inkling of how much I've suffered and kept

going....but that's the way it is. I wonder if men with scoliosis pain get as

much crap and disbelief. Men?

Re: Scoliosis AND Fibromyalgia

Debbie,

I know what you're saying about them not referring you

& discounting your pain. Also I know what you mean

about the pain being on the back burner & you kinda

'forget' about it until it screams at you 'here I AM

LADY!' It took me years for my doc to believe me about

my pain. I was in agony! After 4 yrs he referred me to

a pain clinic, but then it took a year or 2 to find

one that would accept me. So more waiting, wasting my

life. If it were the doctors in pain, it would be a

different story, we all know that. Once you find a doc

who 'gets' you & is willing to listen to you then

you've struck gold. Their ego is not invested in your

seeing someone else, they just want to help you find

something that works.

Also, some doctors seem to put you in a box, label

you. Like with you, since you have scoliosis ANY back

pain (cervical, thoracic, lumbar) is going to be

attributed to the scoliosis. They won't even search

for anything else because they see the scoliosis & say

well, there's your problem, you've just got to learn

to deal with the pain. Meanwhile you could have a

ruptured disc, broken hardware, arthritis, autoimmune

disorder, you name it. I've dealt with being in the

box when it comes to scoliosis and have had to talk

til I'm blue in the face sometimes. ~Moonbeam

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[Guest guest]

Randie,

I also had the experience of them saying scoliosis

didn't cause pain. The ones saying that were the

orthopedists. Any other doc from chiro, podiatrist,

GP, internist, etc. - they were the ones saying my

pain was due to the scoliosis. Go figure. ~Moonbeam

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[Guest guest]

Randie,

Lyrica has been on the market a while, but it's

recently been approved for fibromyalgia pain. Many

doctors were using it off-label for this purpose, so

now they are actually saying it's useful in helping

fibro. It helps with the nerve pain that not many

drugs address. It had been prescribed for diabetic

neuropathy. Nerve pain is usually a burning pain. Hope

that information describes it for you. ~Moonbeam

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[Guest guest]

Bea,

I know exactly what you're saying about how you feel

when other ppl say 'well, my back hurts too.' I am not

a shy person. I think being a patient since the age of

17mos & having groups of docs stand around your bed

looking at your half-naked form, does wonders for

erasing any modesty one might've had. I don't care

what ppl think, because they are gonna think whatever

they want to think. What matters is what I think & I

think I'm pretty cool. I am more than this body!

Anyway, one day I said something about my back pain,

which I usually didn't do. It's only if it's greatly

affecting my performance that I'll say something

because I live with a great degree of pain everyday -

something ppl on this board understand, but the

general population doesn't. So when I said I was in

tremendous pain that day, this person sd the general

'my back hurts, too & you just have to live with it.'

I tried to describe the situation I was dealing with

that it wasn't just basic aches & pains -I'd had

surgery, etc. But this was just a person who was

clueless. We were in a public place. I proceeded to

take off my shirt & stand there in my bra & say see

this scar, & this one & this one? This knot right here

is the top of the rod. This hump right here is where

my spine is-unlike yours which is where it's supposed

to be. I was not ugly about it, just stating the

facts. Then I put my shirt back on. I received an

apology.

Whether you are a person who has had surgery for

scoliosis or one who hasn't, scoliosis affects your

daily life. It's just in different increments. When I

go in a room I have to carefully choose the seating.

Non-scoliosis ppl just have a seat. I have lived with

it for 36 years & have been alive for 42, so the

allowances I have to make in bending & my everyday

life, are simply my way of life. Instead of knealing

down to pick up a dropped pencil, I pick it up with my

toes & bring it to my hand, for example. I turn my

whole body to look at something instead of turning my

head with my limited neck rotation to the right.

Having scoliosis is a hassle - your clothes don't fit

right & there are so many things we must consider that

other ppl never have to give a thought to. Personally,

they've turned me into a steel magnolia. I was once

told by a counsellor that I was the strongest person

she'd ever known. Now, that was a compliment! ~Moonbeam

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[Guest guest]

Debbie,

I remember reading your post about that radiologist.

Even ppl in the medical profession have their own

ideas that override the science. When I read that post

I immediately thought of Louise Hay-author of a book

that attributes all physical symptoms to emotional

issues. It doesn't matter if you got hit by a car &

had your leg amputated, she'd have an emotional theory

for it even reaching back into one of your past lives.

She's popular on the new age circuit. Sadly, some ppl

believe that garbage. ~Moonbeam

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[Guest guest]

MB: you go girl!! What a lot of chutzpah you have. And I think your're pretty

cool too. Love to meet you someday.

Debbie

L Howell <moonbeamblessings@...> wrote:

Bea,

I know exactly what you're saying about how you feel

when other ppl say 'well, my back hurts too.' I am not

a shy person. I think being a patient since the age of

17mos & having groups of docs stand around your bed

looking at your half-naked form, does wonders for

erasing any modesty one might've had. I don't care

what ppl think, because they are gonna think whatever

they want to think. What matters is what I think & I

think I'm pretty cool. I am more than this body!

Anyway, one day I said something about my back pain,

which I usually didn't do. It's only if it's greatly

affecting my performance that I'll say something

because I live with a great degree of pain everyday -

something ppl on this board understand, but the

general population doesn't. So when I said I was in

tremendous pain that day, this person sd the general

'my back hurts, too & you just have to live with it.'

I tried to describe the situation I was dealing with

that it wasn't just basic aches & pains -I'd had

surgery, etc. But this was just a person who was

clueless. We were in a public place. I proceeded to

take off my shirt & stand there in my bra & say see

this scar, & this one & this one? This knot right here

is the top of the rod. This hump right here is where

my spine is-unlike yours which is where it's supposed

to be. I was not ugly about it, just stating the

facts. Then I put my shirt back on. I received an

apology.

Whether you are a person who has had surgery for

scoliosis or one who hasn't, scoliosis affects your

daily life. It's just in different increments. When I

go in a room I have to carefully choose the seating.

Non-scoliosis ppl just have a seat. I have lived with

it for 36 years & have been alive for 42, so the

allowances I have to make in bending & my everyday

life, are simply my way of life. Instead of knealing

down to pick up a dropped pencil, I pick it up with my

toes & bring it to my hand, for example. I turn my

whole body to look at something instead of turning my

head with my limited neck rotation to the right.

Having scoliosis is a hassle - your clothes don't fit

right & there are so many things we must consider that

other ppl never have to give a thought to. Personally,

they've turned me into a steel magnolia. I was once

told by a counsellor that I was the strongest person

she'd ever known. Now, that was a compliment! ~Moonbeam

__________________________________________________________

Never miss a thing. Make your home page.

http://www./r/hs

[Guest guest]

It's so amazing to hear someone say exactly what I've felt and experienced. I

can feel so alone in my pain, and that whole thing of " my back hurts too " or my

favorite is when someone says to me that they have a high tolerance for

pain--meaning I don't. I say, step inside my body for a minute and we'll see who

has a high tolerance for pain! I've been to chronic pain groups where everyone

is sitting around talking about pain, but no one is moving around and acting

like sitting is one of the most difficult positions to endure, like I do.

Different pain, and not to say other people don't have bad pain. I just have so

many times where I feel like I'm discounted, like the fact that I have back

problems means I'm weak somehow.

Re: Scoliosis AND Fibromyalgia

Bea,

I know exactly what you're saying about how you feel

when other ppl say 'well, my back hurts too.' I am not

a shy person. I think being a patient since the age of

17mos & having groups of docs stand around your bed

looking at your half-naked form, does wonders for

erasing any modesty one might've had. I don't care

what ppl think, because they are gonna think whatever

they want to think. What matters is what I think & I

think I'm pretty cool. I am more than this body!

Anyway, one day I said something about my back pain,

which I usually didn't do. It's only if it's greatly

affecting my performance that I'll say something

because I live with a great degree of pain everyday -

something ppl on this board understand, but the

general population doesn't. So when I said I was in

tremendous pain that day, this person sd the general

'my back hurts, too & you just have to live with it.'

I tried to describe the situation I was dealing with

that it wasn't just basic aches & pains -I'd had

surgery, etc. But this was just a person who was

clueless. We were in a public place. I proceeded to

take off my shirt & stand there in my bra & say see

this scar, & this one & this one? This knot right here

is the top of the rod. This hump right here is where

my spine is-unlike yours which is where it's supposed

to be. I was not ugly about it, just stating the

facts. Then I put my shirt back on. I received an

apology.

Whether you are a person who has had surgery for

scoliosis or one who hasn't, scoliosis affects your

daily life. It's just in different increments. When I

go in a room I have to carefully choose the seating.

Non-scoliosis ppl just have a seat. I have lived with

it for 36 years & have been alive for 42, so the

allowances I have to make in bending & my everyday

life, are simply my way of life. Instead of knealing

down to pick up a dropped pencil, I pick it up with my

toes & bring it to my hand, for example. I turn my

whole body to look at something instead of turning my

head with my limited neck rotation to the right.

Having scoliosis is a hassle - your clothes don't fit

right & there are so many things we must consider that

other ppl never have to give a thought to. Personally,

they've turned me into a steel magnolia. I was once

told by a counsellor that I was the strongest person

she'd ever known. Now, that was a compliment! ~Moonbeam

____________ _________ _________ _________ _________ _________ _

Never miss a thing. Make your home page.

http://www.. com/r/hs

________________________________________________________________________________\

____

Looking for last minute shopping deals?

Find them fast with Search.

http://tools.search./newsearch/category.php?category=shopping