Re: Progression?

[Guest guest]

Hi,

From what I have read about the disease is that it is supposed to be

a nonprogressive disease. I have only had it a few years, and have not

gotten worse. My doctor (he is one of the good fibro docs) says it's

not supposed to get worse, but as with age your body gets worse and so

you will have to deal with fibro a different way then you might had to

when you were younger. You might want to get some more opinions on it.

However, I don't think a lot of studies have been done on the

progression on it. Wanted to give you the little input I had hope it

helps.

(NC)

[Guest guest]

Well from what I have read here and my own experience, it progresses. Sometimes

when they say it is not progressive they mean " it won't kill you " . However, in

most cases you will find here, it gets worse with the years. I know it did with

me.

However, I am not going to say that NO ONE gets better and it stays at the

same level with EVERYONE.... just what I believe from my experience and what I

have read from others.

love and hugs,

Debra V.

wrote:

Hi,

From what I have read about the disease is that it is supposed to be

a nonprogressive disease. I have only had it a few years, and have not

gotten worse. My doctor (he is one of the good fibro docs) says it's

not supposed to get worse, but as with age your body gets worse and so

you will have to deal with fibro a different way then you might had to

when you were younger. You might want to get some more opinions on it.

However, I don't think a lot of studies have been done on the

progression on it. Wanted to give you the little input I had hope it

helps.

(NC)

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

Looking for last minute shopping deals? Find them fast with Yahoo! Search.

[Guest guest]

I read this on the website

http://www.nationalpainfoundation.org/MyTreatment/articles/Fibromyalgia_Myths.as\

p

that discusses the common myths of fibromyalgia:

(I do not believe it progresses. I'm actually a LOT better than I was

five years ago due to how I manage this.)

*Myth:* Fibromyalgia will cause serious damage to my body.*

Fact:* Fibromyalgia does not appear to cause progressive

deterioration or damage to the body. Many people report that their

symptoms have progressed over time. What many people are experiencing

is a decline in their level of functioning. This is a common occurrence

that usually can be reversed. When you are in pain or fatigued, it is

common to decrease your activity level---this decreased activity leads

to deconditioned muscles. Simple tasks, such as sweeping or washing

dishes, can seem monumental when you are deconditioned.

>

[Guest guest]

Heck yeah it progresses. I don't care what the doctors say, they aren't in

our bodies. Please forgive my lack of diplomacy today as I am in way too

much pain for one person and two cats to carry.

Tigger (Ruth) in Rhode Island

_____

From: Fibromyalgia_Support_Group

[mailto:Fibromyalgia_Support_Group ] On Behalf Of debra van

ness

Sent: Monday, February 04, 2008 10:47 AM

To: Fibromyalgia_Support_Group

Subject: Re: Re: Progression?

Well from what I have read here and my own experience, it progresses.

Sometimes when they say it is not progressive they mean " it won't kill you " .

However, in most cases you will find here, it gets worse with the years. I

know it did with me.

However, I am not going to say that NO ONE gets better and it stays at the

same level with EVERYONE.... just what I believe from my experience and what

I have read from others.

love and hugs,

Debra V.

<ldyivywillow@ <mailto:ldyivywillow%40yahoo.com> yahoo.com> wrote:

Hi,

From what I have read about the disease is that it is supposed to be

a nonprogressive disease. I have only had it a few years, and have not

gotten worse. My doctor (he is one of the good fibro docs) says it's

not supposed to get worse, but as with age your body gets worse and so

you will have to deal with fibro a different way then you might had to

when you were younger. You might want to get some more opinions on it.

However, I don't think a lot of studies have been done on the

progression on it. Wanted to give you the little input I had hope it

helps.

(NC)

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

Looking for last minute shopping deals? Find them fast with Yahoo! Search.

[Guest guest]

Tigger I agree with you. This disease has progressed in some form on my body.

Especially compared to when I first was dx'd. It seems every year there is

something new and it does not necessarily mean use of limbs or strength. Things

affect me now that never did in the beginning. My body temp, fragrances and

smell, my bodies reaction to different moods or feelings.

Like I mentioned earlier how would that come into play for young children who

are being Dx'd. They haven't had a chance to be slowed down yet. I also was

not told that the disease progressed until just a few years ago and my

Rhuematologist is also considered the fibro doctor in this area. So as far as I

knew fibro did not get worse. In other words it was not in my head that this

disease could get worse and that I had talked myself into the fact that I was

getting worse. But when the Doc told me different I could remember each point

in my life where something would change. And it was not always related to

strength or exercise.

I guess until the facts are in from the studies they are doing my decision

will not be made until they know what they are doing. I am not saying that

being laid up for 1 1/2 years from a dislocated surgery, or knee surgery, or a

hysterectomy could not make it worse as in real life anything like that takes a

toll on the body. I have always bounced back even after being Dx'd. Granted I

am older and do expect some things to get rougher for me but not my entire life.

Not everything I feel see hear or taste. So until they can come up with some

facts some of the so called myths leave a lot of room for speculation. This

effects everyone differently. Whose not to say that if I started a rigorous

exercise routine, ate healthy, and changed my lifestyle completely that I may

not feel better. Especially about yourself thats a given in that situation.

But your body will tell you what is right for you. I believe this disease does

deteriorate different things in your body over

time. How could it not! Most diseases do that to anyone.

Lori H

Tigger wrote:

Heck yeah it progresses. I don't care what the doctors say, they

aren't in

our bodies. Please forgive my lack of diplomacy today as I am in way too

much pain for one person and two cats to carry.

Tigger (Ruth) in Rhode Island

_____

From: Fibromyalgia_Support_Group

[mailto:Fibromyalgia_Support_Group ] On Behalf Of debra van

ness

Sent: Monday, February 04, 2008 10:47 AM

To: Fibromyalgia_Support_Group

Subject: Re: Re: Progression?

Well from what I have read here and my own experience, it progresses.

Sometimes when they say it is not progressive they mean " it won't kill you " .

However, in most cases you will find here, it gets worse with the years. I

know it did with me.

However, I am not going to say that NO ONE gets better and it stays at the

same level with EVERYONE.... just what I believe from my experience and what

I have read from others.

love and hugs,

Debra V.

<ldyivywillow@ <mailto:ldyivywillow%40yahoo.com> yahoo.com> wrote:

Hi,

From what I have read about the disease is that it is supposed to be

a nonprogressive disease. I have only had it a few years, and have not

gotten worse. My doctor (he is one of the good fibro docs) says it's

not supposed to get worse, but as with age your body gets worse and so

you will have to deal with fibro a different way then you might had to

when you were younger. You might want to get some more opinions on it.

However, I don't think a lot of studies have been done on the

progression on it. Wanted to give you the little input I had hope it

helps.

(NC)

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

Looking for last minute shopping deals? Find them fast with Yahoo! Search.

[Guest guest]

I would tend to agree that there is no physical worsening to the body as in

actual FM pain signals. The progression comes from us being in pain and

inactive and then getting the weaker deconditioned muscles which causes us

more pain when we try to use them. We should try to fight this by being as

active as possible, but man, IT IS SO HARD! I'm on my 5th day of feeling so

tired and depressed. I wanna know what happened to my wonderful combo of

Cymbalta-Provigil. The only explanation I have is I believe I'm fighting a

virus and I'm so sick of the winter weather. Just read we're going to

10-14 " of snow tonight. Gheesh. Guess the kids will get another Wednesday

off from school.

Jeanne in WI

>I read this on the website

>

http://www.nationalpainfoundation.org/MyTreatment/articles/Fibromyalgia_Myths.as\

p

> that discusses the common myths of fibromyalgia:

> (I do not believe it progresses. I'm actually a LOT better than I was

> five years ago due to how I manage this.)

>

> *Myth:* Fibromyalgia will cause serious damage to my body.*

> Fact:* Fibromyalgia does not appear to cause progressive deterioration

> or damage to the body. Many people report that their symptoms have

> progressed over time. What many people are experiencing is a decline in

> their level of functioning. This is a common occurrence

that usually can be reversed. When you are in pain or fatigued, it is

common to decrease your activity level---this decreased activity leads to

deconditioned muscles. Simple tasks, such as sweeping or washing dishes,

can seem monumental when you are deconditioned.

[Guest guest]

I know for sure that mine has progressed too. When I started having symptoms in

1989, I was as active as anyone could be - sometimes more than I could believe

got done. I was a non stop go getter and never felt tired, except for the good

kind, or confused, or forgetful. I could make snap decisions and never missed

or was late for a thing. Then everything went downhill to what I'm like today.

It was definitely progressive because I had to give up a few things at a time,

it didn't just come over me and that was that. The most energetic things went

first and little by little fibro sucked my life from me and I didn't quit work

until 2001 full time and didn't quit part time until 2003.

I'm trying to start back up a little part time because I need the money so

badly, don't really know if it's a pipe dream or not. I'm redoing my web site

and getting new business cards and attending a convention for special education

the first of April, God willing and the crick don't rise. I just have to figure

out something because I don't have any money and will lose my house by March

2009 and have nowhere to go or anything to live on after that unless I come up

with something I can do from home that is flexible. I'm hoping this thing is

it.

Anyway I digress, yes Fibro is definitely progressive for me.

Marti

Tigger wrote:

I also believe it's progressive. If it wasn't, I would still be

working.

Granted, I've a few other speedbumps in my way, but I do know mine has

progressed.

Tigger (Ruth) in Rhode Island

_____

From: Fibromyalgia_Support_Group

[mailto:Fibromyalgia_Support_Group ] On Behalf Of debra van

ness

Sent: Tuesday, February 05, 2008 10:08 AM

To: Fibromyalgia_Support_Group

Subject: Re: Re: Progression?

I don't agree. LOL. But everyone of course has a different experience. I

really have not changed my activity levels much since diagnosis.

Because...... I HAVE to work. So I still work full time and it seems this

crap has gotten worse and worse the last few years. An example, I use my

hands everyday and my arms and legs... however the pain is alot worse now.

(in fact it was not painful at all up until 5 years ago). I know my right

shoulder is not used any less than it use to be. But it has been in a

constant state of stiffness and pain for the last 3 months along with loss

of range of motion.

love and hugs,

Debra V.

Jeanne and Dave <djgraves9497@ <mailto:djgraves9497%40sbcglobal.net>

sbcglobal.net> wrote:

I would tend to agree that there is no physical worsening to the body as in

actual FM pain signals. The progression comes from us being in pain and

inactive and then getting the weaker deconditioned muscles which causes us

more pain when we try to use them. We should try to fight this by being as

active as possible, but man, IT IS SO HARD! I'm on my 5th day of feeling so

tired and depressed. I wanna know what happened to my wonderful combo of

Cymbalta-Provigil. The only explanation I have is I believe I'm fighting a

virus and I'm so sick of the winter weather. Just read we're going to

10-14 " of snow tonight. Gheesh. Guess the kids will get another Wednesday

off from school.

Jeanne in WI

>I read this on the website

> http://www.national

<http://www.nationalpainfoundation.org/MyTreatment/articles/Fibromyalgia_Myt

hs.asp> painfoundation.org/MyTreatment/articles/Fibromyalgia_Myths.asp

> that discusses the common myths of fibromyalgia:

> (I do not believe it progresses. I'm actually a LOT better than I was

> five years ago due to how I manage this.)

>

> *Myth:* Fibromyalgia will cause serious damage to my body.*

> Fact:* Fibromyalgia does not appear to cause progressive deterioration

> or damage to the body. Many people report that their symptoms have

> progressed over time. What many people are experiencing is a decline in

> their level of functioning. This is a common occurrence

that usually can be reversed. When you are in pain or fatigued, it is

common to decrease your activity level---this decreased activity leads to

deconditioned muscles. Simple tasks, such as sweeping or washing dishes,

can seem monumental when you are deconditioned.

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

Looking for last minute shopping deals? Find them fast with Yahoo! Search.

[Guest guest]

It is hard.

I'm a total fighter though and refuse to let it win. I've come so far

in 13 years and I'm better than I was even five years ago. No, it

doesn't go away, but it can be managed. I'm living breathing proof of

that.

I think sometimes there may be other conditions that might worsen

without treatment, like the ibs and sinus issues I deal with. Or for

some, the thyroid conditions, or the disc problems in our necks or

backs, etc. But my fibro doesn't worsen unless I do nothing. If I

don't get any exercise, if I don't eat right, if I don't go to the

chiro, and if I don't keep fighting, yes it gets worse in me and my body.

I refuse to let it win!!! I've learned to treat and manage this thing

as best as I can. I refuse to let fibro 'have' me. I'm too stubborn

and hard headed for that! And much too strong. I'm a fighter!

Jeanne and Dave wrote:

> I would tend to agree that there is no physical worsening to the body as in

> actual FM pain signals. The progression comes from us being in pain and

> inactive and then getting the weaker deconditioned muscles which causes us

> more pain when we try to use them. We should try to fight this by being as

> active as possible, but man, IT IS SO HARD! I'm on my 5th day of feeling so

> tired and depressed. I wanna know what happened to my wonderful combo of

> Cymbalta-Provigil. The only explanation I have is I believe I'm fighting a

> virus and I'm so sick of the winter weather. Just read we're going to

> 10-14 " of snow tonight. Gheesh. Guess the kids will get another Wednesday

> off from school.

> Jeanne in WI

>

>

[Guest guest]

Yes, I know there are always cases that argue the point. I guess I was just

basing my answer in what I've read lately in a couple books. There is a

fine line for us between not using our muscles enough and overdoing it. I

bet that line has definitely shifted for you.

Jeanne in WI

>I don't agree. LOL. But everyone of course has a different experience. I

>really have not changed my activity levels much since diagnosis.

>Because...... I HAVE to work. So I still work full time and it seems this

>crap has gotten worse and worse the last few years. An example, I use my

>hands everyday and my arms and legs... however the pain is alot worse now.

>(in fact it was not painful at all up until 5 years ago). I know my right

>shoulder is not used any less than it use to be. But it has been in a

>constant state of stiffness and pain for the last 3 months along with loss

>of range of motion.

> love and hugs,

> Debra V.

>

> Jeanne and Dave wrote:

> I would tend to agree that there is no physical worsening to the

> body as in actual FM pain signals. The progression comes from us being in

> pain and inactive and then getting the weaker deconditioned muscles which

> causes us more pain when we try to use them. We should try to fight this

> by being as active as possible, but man, IT IS SO HARD!

[Guest guest]

I guess so sweetie. I mean fibro is a wierd creature. You never know how it

will affect you. I am sure though that when we get more sedentary it is true

our muscles don't work as well... if you don't use it you lose it. LOL. This

is very true actually. So it is really damned if we do and damned if we don't.

Thanks,

love and hugs to ya,

Debra V.

Jeanne and Dave wrote:

Yes, I know there are always cases that argue the point. I guess I was

just

basing my answer in what I've read lately in a couple books. There is a

fine line for us between not using our muscles enough and overdoing it. I

bet that line has definitely shifted for you.

Jeanne in WI

>I don't agree. LOL. But everyone of course has a different experience. I

>really have not changed my activity levels much since diagnosis.

>Because...... I HAVE to work. So I still work full time and it seems this

>crap has gotten worse and worse the last few years. An example, I use my

>hands everyday and my arms and legs... however the pain is alot worse now.

>(in fact it was not painful at all up until 5 years ago). I know my right

>shoulder is not used any less than it use to be. But it has been in a

>constant state of stiffness and pain for the last 3 months along with loss

>of range of motion.

> love and hugs,

> Debra V.

>

> Jeanne and Dave wrote:

> I would tend to agree that there is no physical worsening to the

> body as in actual FM pain signals. The progression comes from us being in

> pain and inactive and then getting the weaker deconditioned muscles which

> causes us more pain when we try to use them. We should try to fight this

> by being as active as possible, but man, IT IS SO HARD!

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

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[Guest guest]

I'm sorry, I don't know why this got sent twice. Marti

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

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[Guest guest]

I am in total agreement with Marti,

I didn't just wake up one day and decide I hurt so I'm going to stop

doing everything I love. I was a furniture finisher for almost 20

years and was one of the most respected in this part of the country.

It was my life, I fought giving it up every step of the way. I cut

down my hours, my boss did everything he could to only give me light

duty jobs. But when I couldn't make it through a 4 hour day without

having to lay down in the cot my boss bought for me. I had to let it

go. My body gave out way before I did!!! I'm sure that most people

with fibro have similar stories. I do know this monster get's worse

if you try to push yourself to much even faster than if you did

nothing at all. I agree it is important to do some kind of excersize

though to keep your body moving, but it always depends on the

individual how much they can take.

> > I would tend to agree that there is no physical worsening to the

> > body as in actual FM pain signals. The progression comes from us

being in

> > pain and inactive and then getting the weaker deconditioned

muscles which

> > causes us more pain when we try to use them. We should try to

fight this

> > by being as active as possible, but man, IT IS SO HARD!

>

> ---------------------------------

> Looking for last minute shopping deals? Find them fast with Yahoo!

Search.

>

>

[Guest guest]

> I am as active as possible. I do push myself to the limits. I

can't be anymore active than I am because of the Fibromyalgia, not the

other way around. My family would love that statement to get more

active and fight this, then it would be my fault and not the diseases.

I'll just leave you with this. a Martism.

>

> I do what I do because I can.

> I don't do what I don't because I can't.

> If I could fix it I would publish a plan.

> I would love to do it all again.

>

> Take care, Marti

I have been reading what everyone has to say about progression of this

condition with great interest. I love your Martism! That is so true!

My experience has been that I believe there is a progression. I'm not

sure I can say exactly what the cause is. I understand the " if you

don't use it, you lose it " attitude. It makes complete sense in my

mind. But someone else here said that there is a fine line between

keeping active and overdoing it. It is that fine line that I struggle

with. I went through a pain management program and that was how they

talked about pain. They encouraged me to be aware of how much I could

do and then keep myself just under that threshold. I'm starting to

think that the threshold moves depending on the day! There doesn't

seem to be a clear line where I can always judge what will be too much.

I have also experienced what might be termed a remission. I remember

my sister talking about hers and feeling that maybe she had been

" cured " ! She felt so good for a while. I also had that experience.

I kept thinking that maybe my fibro wasn't as bad as hers.

Well, I guess it isn't a stagnant thing. There are flares and better

times, which can go on for more than just a day, or a week, or a month

or longer. The bottom line is that we have fibro, and we all do what

we can to help in whatever ways work FOR US!

I envy those of you who are able to actually get a handle on this

condition. I listen to your words and keep them with me as they offer

hope that I can get there if I listen to my body and respond in ways

that help. Melody, I celebrate your success with you! You inspire me!

Thanks,

Vicki

MN

[Guest guest]

On the muscle topic, I believe everyone has some right to the theory, but yet no

one with the fibromyalgia disease knows the usage of exercise point, to what

extent is good for the disease. My experinces have been so baazar! I also

always worked FT 40 and up hrs a week I loved my type of work and threw myself

into as much as I could get as it kept my mind off of my pain SOMETIMES. I also

noticed in the last 3 yrs things starting to give out and could not figure, as I

have always been active and sure to handle the schedule I kept. My Dr's once I

was diagnoised with Fibro and had c/o's told me to slow my work, change my high

impact exercise to low, strech, yoga etc., but I didn't think they new what was

right, I needed these things. Well here I am bed ridden after almost every

little task I perform, 2 shoulder surgeries, a knee completley gone, and the

other on it's way and NO pain control despite the number of meds. I have been

told that I sprained my calf muscle

painting a closet floor. Have major tendinitis again from moving my arm to

many times in a kickbox class, and even weeding a small patch {because I hate

weeding} of garden tore up my shoulder again. I use to love to walk but barley

make it a block now or am afraid I won't get back and no one to help me back

home. Woman in Maine found froze in snowbank trying to exercise her fibromyalgia

pain away. LOL No I just know my muscle have disenigrated, I was always a big,

walker did exercise for I had a pulmonary embolism and was told to do aroebic

exercise, and now I can barley get going. I think the need to exercise is like

finding the right cocktail to take to eliminate pain, all though exercise is

good for most aliments, and can be keep things circulating but also cause a day

or two of bedrest recovery, so what has been accomplished body feeding wise. I

guess all I am saying is be carefull on starting a new exercise, because I have

proven to myself my FUN exercise is

over, and I really believe I have some type of muscle damage due to either the

fibro itself or the meds I have taken long term.

Sharon

claudette hudson wrote:

I think it is true that when we dont keep up the activity the muscles

decondition.I know thats what has happened to me, my last pain doctor told me my

muscles were deconditioned from not using them, but I think that we get that way

because something has started the downward spiral from not feeling at all good

from the start. We start out feeling crappy, then thats when the whole life gets

rearranged and then the activity level decreases. I have done more this year

than any year combined and have had improvements, but still at the same time

have noticed new pain and sometimes the physical exertion can make a muscle

worse if it is overused or stretched beyond its limit, but I still feel

excersize has been a great thing and feel that I am doing some good.

debra van ness wrote: I guess so sweetie. I mean fibro

is a wierd creature. You never know how it will affect you. I am sure though

that when we get more sedentary it is true our muscles don't work as well... if

you don't use it you lose it. LOL. This is very true actually. So it is really

damned if we do and damned if we don't.

Thanks,

love and hugs to ya,

Debra V.

Jeanne and Dave wrote:

Yes, I know there are always cases that argue the point. I guess I was just

basing my answer in what I've read lately in a couple books. There is a

fine line for us between not using our muscles enough and overdoing it. I

bet that line has definitely shifted for you.

Jeanne in WI

>I don't agree. LOL. But everyone of course has a different experience. I

>really have not changed my activity levels much since diagnosis.

>Because...... I HAVE to work. So I still work full time and it seems this

>crap has gotten worse and worse the last few years. An example, I use my

>hands everyday and my arms and legs... however the pain is alot worse now.

>(in fact it was not painful at all up until 5 years ago). I know my right

>shoulder is not used any less than it use to be. But it has been in a

>constant state of stiffness and pain for the last 3 months along with loss

>of range of motion.

> love and hugs,

> Debra V.

>

> Jeanne and Dave wrote:

> I would tend to agree that there is no physical worsening to the

> body as in actual FM pain signals. The progression comes from us being in

> pain and inactive and then getting the weaker deconditioned muscles which

> causes us more pain when we try to use them. We should try to fight this

> by being as active as possible, but man, IT IS SO HARD!

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

Looking for last minute shopping deals? Find them fast with Yahoo! Search.

[Guest guest]

Hey Tigger,

Can you spell PAIN? Since Sunday I have been at 10++++++++. I can bareley move a

centimeter without crying. Caring for my personal needs is nearly impossible. I

need to get into the shower but can't step into it. My muscles are spasming from

the pain. Even my eyes are spasming. Today I can move more than yesterday. LOL

Thank god I see the neurologist on Thursday. She is handling my pain care. She

ordered me more vicodin to hold me over til then. I couldn't even heat up my

own cup of coffee.

How are you?

Did you watch the game on Sunday? I can't believe that the patriots lost in the

last few seconds. Oh well, they are favorites for next year already.

JudyMer

---- Tigger wrote:

> Heck yeah it progresses. I don't care what the doctors say, they aren't in

> our bodies. Please forgive my lack of diplomacy today as I am in way too

> much pain for one person and two cats to carry.

>

>

>

> Tigger (Ruth) in Rhode Island

>

>

>

>

>

> _____

>

> From: Fibromyalgia_Support_Group

> [mailto:Fibromyalgia_Support_Group ] On Behalf Of debra van

> ness

> Sent: Monday, February 04, 2008 10:47 AM

> To: Fibromyalgia_Support_Group

> Subject: Re: Re: Progression?

>

>

>

> Well from what I have read here and my own experience, it progresses.

> Sometimes when they say it is not progressive they mean " it won't kill you " .

> However, in most cases you will find here, it gets worse with the years. I

> know it did with me.

> However, I am not going to say that NO ONE gets better and it stays at the

> same level with EVERYONE.... just what I believe from my experience and what

> I have read from others.

> love and hugs,

> Debra V.

>

> <ldyivywillow@ <mailto:ldyivywillow%40yahoo.com> yahoo.com> wrote:

> Hi,

> From what I have read about the disease is that it is supposed to be

> a nonprogressive disease. I have only had it a few years, and have not

> gotten worse. My doctor (he is one of the good fibro docs) says it's

> not supposed to get worse, but as with age your body gets worse and so

> you will have to deal with fibro a different way then you might had to

> when you were younger. You might want to get some more opinions on it.

> However, I don't think a lot of studies have been done on the

> progression on it. Wanted to give you the little input I had hope it

> helps.

>

> (NC)

>

> ---------------------------------

> Looking for last minute shopping deals? Find them fast with Yahoo! Search.

>

>

[Guest guest]

It's true if you don't stay active your muscles will decondition.

When I learned I had fibro in early 90's I stayed active at the gym.

When I am in a flare I still at least try to walk. My muscles are

still in good shape since I maintain mobility are much as possible.

Debbie J

nurse

>

> I think it is true that when we dont keep up the activity the

muscles decondition.I know thats what has happened to me, my last

pain doctor told me my muscles were deconditioned from not using

them, but I think that we get that way because something has started

the downward spiral from not feeling at all good from the start.>

>

>

>

>

>

> ---------------------------------

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>

>

[Guest guest]

> > I would tend to agree that there is no physical worsening to the

> > body as in actual FM pain signals. The progression comes from us

being in

> > pain and inactive and then getting the weaker deconditioned

muscles which

> > causes us more pain when we try to use them. We should try to

fight this

> > by being as active as possible, but man, IT IS SO HARD!

>

> ---------------------------------

> Looking for last minute shopping deals? Find them fast with Yahoo!

Search.

>

>

[Guest guest]

> I think it is true that when we dont keep up the activity the

> muscles decondition.I know thats what has happened to me, my last

> pain doctor told me my muscles were deconditioned from not using

> them, but I think that we get that way because something has

> started the downward spiral from not feeling at all good from the

> start. We start out feeling crappy, then thats when the whole life

> gets rearranged and then the activity level decreases. I have done

> more this year than any year combined and have had improvements,

> but still at the same time have noticed new pain and sometimes the

> physical exertion can make a muscle worse if it is overused or

> stretched beyond its limit, but I still feel excersize has been a

> great thing and feel that I am doing some good.

I think it's helpful for a person who has been inactive for a long

time to have a doctor prescribe a course of physical therapy. The

phys. therp. can work on developing a set of exercises that the

person can do at home. Going to a gym, even with a trainer, is not

the same. The phys. therp. can take into account how badly out of

shape we get, and have us start really, really gently. Once we have

the instructions, and the sheets of exercises, the phys. therp. can

give instructions on how to gently increase the level of exercise

over time. But the exercise should be so gentle that we don't hurt

ourselves, and done under a doctor's care. That was the problem

every time I tried to start exercising when I was super morbidly

obese - I'd hurt something. And those " little " injuries were always

triggering flares.

The other thing is that when I was doing phys therp. early on after

my knee replacment, they always told me to take my pain meds before

doing it. Otherwise, it just hurt too badly. For those who take

pain meds for acute times, after we take the pain meds might be a

good time to do some moving around.

It's easy to say " get moving " ; the reality is certainly a lot

harder. I hope people talk to the doctor about this. It's so

terribly different, but I've been working on it (between surgeries)

for the past 2.5 years and it's really beginning to pay off. I'm in

a lot better shape and can do a lot more than I could.

In a sense, I've spent the past 2.5 years trying to clear all of the

explainable, fixable pain out of my life, between the weight loss

surgery and the knee replacements. I've worked very hard on building

strength, so I don't have the back and neck and arm pain that I've

had for years (I still have it sometimes anyway). I still have the

fibromyalgia pain. That hasn't changed. But it's not as complicated

by the other aches and pains and injuries from being so terribly out

of shape.

Again, the strength that I have is pitiful compared to a normal

person. Witness my " teaspoon at a time " approach to building my

French drain. But three years ago I couldn't have dreamed of doing

anything like that. Now, it costs me, but I can do it.

Z

[Guest guest]

>

> > I think it is true that when we dont keep up the activity the

> > muscles decondition.I know thats what has happened to me, my

last

> > pain doctor told me my muscles were deconditioned from not using

> > them, but I think that we get that way because something has

> > started the downward spiral from not feeling at all good from

the

> > start. We start out feeling crappy, then thats when the whole

life

> > gets rearranged and then the activity level decreases. I have

done

> > more this year than any year combined and have had improvements,

> > but still at the same time have noticed new pain and sometimes

the

> > physical exertion can make a muscle worse if it is overused or

> > stretched beyond its limit, but I still feel excersize has been

a

> > great thing and feel that I am doing some good.

>

> I think it's helpful for a person who has been inactive for a long

> time to have a doctor prescribe a course of physical therapy. The

> phys. therp. can work on developing a set of exercises that the

> person can do at home. Going to a gym, even with a trainer, is

not

> the same. The phys. therp. can take into account how badly out of

> shape we get, and have us start really, really gently. Once we

have

> the instructions, and the sheets of exercises, the phys. therp.

can

> give instructions on how to gently increase the level of exercise

> over time. But the exercise should be so gentle that we don't

hurt

> ourselves, and done under a doctor's care. That was the problem

> every time I tried to start exercising when I was super morbidly

> obese - I'd hurt something. And those " little " injuries were

always

> triggering flares.

>

> The other thing is that when I was doing phys therp. early on

after

> my knee replacment, they always told me to take my pain meds

before

> doing it. Otherwise, it just hurt too badly. For those who take

> pain meds for acute times, after we take the pain meds might be a

> good time to do some moving around.

>

> It's easy to say " get moving " ; the reality is certainly a lot

> harder. I hope people talk to the doctor about this. It's so

> terribly different, but I've been working on it (between

surgeries)

> for the past 2.5 years and it's really beginning to pay off. I'm

in

> a lot better shape and can do a lot more than I could.

>

> In a sense, I've spent the past 2.5 years trying to clear all of

the

> explainable, fixable pain out of my life, between the weight loss

> surgery and the knee replacements. I've worked very hard on

building

> strength, so I don't have the back and neck and arm pain that I've

> had for years (I still have it sometimes anyway). I still have

the

> fibromyalgia pain. That hasn't changed. But it's not as

complicated

> by the other aches and pains and injuries from being so terribly

out

> of shape.

>

> Again, the strength that I have is pitiful compared to a normal

> person. Witness my " teaspoon at a time " approach to building my

> French drain. But three years ago I couldn't have dreamed of

doing

> anything like that. Now, it costs me, but I can do it.

>

> Z

>

>

>

>

[Guest guest]

I think with this fibro thing, we all know it affects each one of us

very differently. It's just as individual as we are.

Some it may progress, but some it may not - like me. All I know is it

if were to progress in me, I'd be in my doc's office trying to find out

what else is wrong with me besides the fibro. Because with me and my

Mom, sister, and Mom's cousin, there is simply no progression at all.

None. Mom is 61 and vibrant, healthy, but has some flarey type days

here and there. She is still working and traveling and going and

doing. Hers never ever progressed.

My sister hurts like I do, maybe worse because she's raising two young

boys and flares more than I do. But she has not progressed, in fact she

was worse off ten years ago during a bad marriage and the stress from

that took its toll on her ibs and other parts of the body.

Mom's cousin is doing great, no progression at all.

Me, as I've mentioned, in 2000 I was in so much pain that I quit my

job. But that was the best thing I could have done for myself, because

I'm much better now than I was then. No progression.

I've gotten to where I'm better than I was, and I am maintaining this

thing as best as I can. My body agrees with what I'm doing and I have

more good days than bad. It just took a lot of trial and error, and a

lot of years to get there. I just didn't give up and didn't stop fighting.

Anyway, maybe in my family it is just genetically 'that way' that our

fibro just 'is' and we manage it and truck on forward despite it. I

just found what works for my body. But if I was getting worse and

worse, I'd be in the docs office wanting more answers other than just

fibro.

[Guest guest]

I'm glad your Fibromyalgia isn't progressive and that you manage it and " truck

on " forward despite it. I'm glad it is that way for the others in your family

too. I'm also glad that you are better than you were several years ago. I'm

happy that you didn't give up and quit fighting. It's a true blessing. I have

known people who have had a very different time with fibro than I have and even

some that had theirs go into " remission " or were " cured " . It is really great

that you are one of the lucky ones. I hope yours doesn't progress.

Despite my not giving up and quitting fighting, my fibromyalgia has

progressed. It has progressed with me kicking and screaming all the way. I will

never give up looking for ways to deal with this disease that has taken

everything I love to do away from me.

As my fibromyalgia has progressed and I hurt more and in different places and

as my brain fog has worsened or become more prevalent and as my fatigue has

become more pronounced and debilitating, I have been to doctor after doctor

looking for what else is wrong with me. There are several things wrong with me

that were there before my dx with fibromyalgia and some other things have been

found along the way. But the reasons for the way my pain, brain fog and fatigue

have progressed is still fibromyalgia.

I do what I do because I can.

I don't do what I don't because I can't - not won't

If I could fix it I would publish a plan - and make a mint

I would love to do it all again - but I can't - not don't I miss my old

way of life.

Blessed be Marti

Melody wrote:

I think with this fibro thing, we all know it affects each one of us

very differently. It's just as individual as we are.

Some it may progress, but some it may not - like me. All I know is it

if were to progress in me, I'd be in my doc's office trying to find out

what else is wrong with me besides the fibro. Because with me and my

Mom, sister, and Mom's cousin, there is simply no progression at all.

None. Mom is 61 and vibrant, healthy, but has some flarey type days

here and there. She is still working and traveling and going and

doing. Hers never ever progressed.

My sister hurts like I do, maybe worse because she's raising two young

boys and flares more than I do. But she has not progressed, in fact she

was worse off ten years ago during a bad marriage and the stress from

that took its toll on her ibs and other parts of the body.

Mom's cousin is doing great, no progression at all.

Me, as I've mentioned, in 2000 I was in so much pain that I quit my

job. But that was the best thing I could have done for myself, because

I'm much better now than I was then. No progression.

I've gotten to where I'm better than I was, and I am maintaining this

thing as best as I can. My body agrees with what I'm doing and I have

more good days than bad. It just took a lot of trial and error, and a

lot of years to get there. I just didn't give up and didn't stop fighting.

Anyway, maybe in my family it is just genetically 'that way' that our

fibro just 'is' and we manage it and truck on forward despite it. I

just found what works for my body. But if I was getting worse and

worse, I'd be in the docs office wanting more answers other than just

fibro.

[Guest guest]

I had a remission the year I quit smoking. I felt soooo good.

I think my body was getting all the oxygen it wasn't during my smoking

years, and my body just felt so good. I seem to respond well to

extra/increased circulation and oxygen, like during warmer months, or

when I get some form of exercise. When the weather is cold, I ache more

unless I have a hot bath or do some form of yoga or walking.

So the year after I quit smoking, I was sure my fibro was completely

gone and cured. It came back though with a horrible sinus infection I

had that winter.

My sister went through a mini remission after her thyroid removal

surgery this past summer, she thought it was just her thyroid making her

hurt. But it came back again.

I do think one day I may try Lyrica but I'm waiting for some time to

pass to read more testimonials. I'm a medication chicken.

Marti Boguski wrote:

> I'm glad your Fibromyalgia isn't progressive and that you manage it and " truck

on " forward despite it. I'm glad it is that way for the others in your family

too. I'm also glad that you are better than you were several years ago. I'm

happy that you didn't give up and quit fighting. It's a true blessing. I have

known people who have had a very different time with fibro than I have and even

some that had theirs go into " remission " or were " cured " . It is really great

that you are one of the lucky ones. I hope yours doesn't progress.

>

> Despite my not giving up and quitting fighting, my fibromyalgia has

progressed. It has progressed with me kicking and screaming all the way. I will

never give up looking for ways to deal with this disease that has taken

everything I love to do away from me.

>

> As my fibromyalgia has progressed and I hurt more and in different places

and as my brain fog has worsened or become more prevalent and as my fatigue has

become more pronounced and debilitating, I have been to doctor after doctor

looking for what else is wrong with me. There are several things wrong with me

that were there before my dx with fibromyalgia and some other things have been

found along the way. But the reasons for the way my pain, brain fog and fatigue

have progressed is still fibromyalgia.

>

> I do what I do because I can.

> I don't do what I don't because I can't - not won't

> If I could fix it I would publish a plan - and make a mint

> I would love to do it all again - but I can't - not don't I miss my

old way of life.

>

> Blessed be Marti

>

>

[Guest guest]

I wasn't talking about what anyone else would do, just stating my own

testimonial. I thought we were allowed to do that.

Marti Boguski wrote:

> I wonder why you find it necessary to say twice that If your fibromyalgia had

progressed you would be in you doctor's office trying to find out what else is

wrong with you besides the fibro.

> Do you not think the people on this site are looking into that all the time.

We post about finding new doctors and different doctors and finding other things

wrong with us. None of us are sitting back just watching the pain, etc of Fibro

progress. We are trying to live our lives just like you are. We do go to the

doctor and look for other causes for the symptoms. It is just that in most of

us the symptoms are just the Fibromyalgia getting worse.

> I know that's true for me and believe it is true for most people with

Fibromyalgia. Why wouldn't you think we would investigate any alternatives just

the same as you would?

>

> Blessed be, Marti

> Melody wrote:

> I think with this fibro thing, we all know it affects each one of us

> very differently. It's just as individual as we are.

> Some it may progress, but some it may not - like me. All I know is it

> if were to progress in me, I'd be in my doc's office trying to find out

> what else is wrong with me besides the fibro. Because with me and my

> Mom, sister, and Mom's cousin, there is simply no progression at all.

> None. Mom is 61 and vibrant, healthy, but has some flarey type days

> here and there. She is still working and traveling and going and

> doing. Hers never ever progressed.

> My sister hurts like I do, maybe worse because she's raising two young

> boys and flares more than I do. But she has not progressed, in fact she

> was worse off ten years ago during a bad marriage and the stress from

> that took its toll on her ibs and other parts of the body.

> Mom's cousin is doing great, no progression at all.

> Me, as I've mentioned, in 2000 I was in so much pain that I quit my

> job. But that was the best thing I could have done for myself, because

> I'm much better now than I was then. No progression.

> I've gotten to where I'm better than I was, and I am maintaining this

> thing as best as I can. My body agrees with what I'm doing and I have

> more good days than bad. It just took a lot of trial and error, and a

> lot of years to get there. I just didn't give up and didn't stop fighting.

> Anyway, maybe in my family it is just genetically 'that way' that our

> fibro just 'is' and we manage it and truck on forward despite it. I

> just found what works for my body. But if I was getting worse and

> worse, I'd be in the docs office wanting more answers other than just

> fibro.

>

>

[Guest guest]

See I knew someone would be mad at me.

Marti Boguski wrote:

> I wonder why you find it necessary to say twice that If your fibromyalgia had

progressed you would be in you doctor's office trying to find out what else is

wrong with you besides the fibro.

> Do you not think the people on this site are looking into that all the time.

We post about finding new doctors and different doctors and finding other things

wrong with us. None of us are sitting back just watching the pain, etc of Fibro

progress. We are trying to live our lives just like you are. We do go to the

doctor and look for other causes for the symptoms. It is just that in most of

us the symptoms are just the Fibromyalgia getting worse.

> I know that's true for me and believe it is true for most people with

Fibromyalgia. Why wouldn't you think we would investigate any alternatives just

the same as you would?

>

> Blessed be, Marti

> Melody wrote:

> I think with this fibro thing, we all know it affects each one of us

> very differently. It's just as individual as we are.

> Some it may progress, but some it may not - like me. All I know is it

> if were to progress in me, I'd be in my doc's office trying to find out

> what else is wrong with me besides the fibro. Because with me and my

> Mom, sister, and Mom's cousin, there is simply no progression at all.

> None. Mom is 61 and vibrant, healthy, but has some flarey type days

> here and there. She is still working and traveling and going and

> doing. Hers never ever progressed.

> My sister hurts like I do, maybe worse because she's raising two young

> boys and flares more than I do. But she has not progressed, in fact she

> was worse off ten years ago during a bad marriage and the stress from

> that took its toll on her ibs and other parts of the body.

> Mom's cousin is doing great, no progression at all.

> Me, as I've mentioned, in 2000 I was in so much pain that I quit my

> job. But that was the best thing I could have done for myself, because

> I'm much better now than I was then. No progression.

> I've gotten to where I'm better than I was, and I am maintaining this

> thing as best as I can. My body agrees with what I'm doing and I have

> more good days than bad. It just took a lot of trial and error, and a

> lot of years to get there. I just didn't give up and didn't stop fighting.

> Anyway, maybe in my family it is just genetically 'that way' that our

> fibro just 'is' and we manage it and truck on forward despite it. I

> just found what works for my body. But if I was getting worse and

> worse, I'd be in the docs office wanting more answers other than just

> fibro.

>

>

[Guest guest]

Not mad, just don't understand like I said. You didn't answer my question

either.

Marti

Melody wrote:

See I knew someone would be mad at me.

Marti Boguski wrote:

> I wonder why you find it necessary to say twice that If your fibromyalgia had

progressed you would be in you doctor's office trying to find out what else is

wrong with you besides the fibro.

> Do you not think the people on this site are looking into that all the time.

We post about finding new doctors and different doctors and finding other things

wrong with us. None of us are sitting back just watching the pain, etc of Fibro

progress. We are trying to live our lives just like you are. We do go to the

doctor and look for other causes for the symptoms. It is just that in most of us

the symptoms are just the Fibromyalgia getting worse.

> I know that's true for me and believe it is true for most people with

Fibromyalgia. Why wouldn't you think we would investigate any alternatives just

the same as you would?

>

> Blessed be, Marti

> Melody wrote:

> I think with this fibro thing, we all know it affects each one of us

> very differently. It's just as individual as we are.

> Some it may progress, but some it may not - like me. All I know is it

> if were to progress in me, I'd be in my doc's office trying to find out

> what else is wrong with me besides the fibro. Because with me and my

> Mom, sister, and Mom's cousin, there is simply no progression at all.

> None. Mom is 61 and vibrant, healthy, but has some flarey type days

> here and there. She is still working and traveling and going and

> doing. Hers never ever progressed.

> My sister hurts like I do, maybe worse because she's raising two young

> boys and flares more than I do. But she has not progressed, in fact she

> was worse off ten years ago during a bad marriage and the stress from

> that took its toll on her ibs and other parts of the body.

> Mom's cousin is doing great, no progression at all.

> Me, as I've mentioned, in 2000 I was in so much pain that I quit my

> job. But that was the best thing I could have done for myself, because

> I'm much better now than I was then. No progression.

> I've gotten to where I'm better than I was, and I am maintaining this

> thing as best as I can. My body agrees with what I'm doing and I have

> more good days than bad. It just took a lot of trial and error, and a

> lot of years to get there. I just didn't give up and didn't stop fighting.

> Anyway, maybe in my family it is just genetically 'that way' that our

> fibro just 'is' and we manage it and truck on forward despite it. I

> just found what works for my body. But if I was getting worse and

> worse, I'd be in the docs office wanting more answers other than just

> fibro.

>

>