Re: Fibromyalgia

September 22, 2002

> >Sometimes I hate this disease. And I think it's something else we

can

> >thank our crazy nadas for.

>

> Wow - you guys have fibro too? Maybe you're right. There do seem

to be a

> lot of us.

>

> I am thankful for two things - one is that I've finally found a

good pain

> specialist who believes in fibromyalgia and realizes that someone

with that

> plus a herniated disk is going to be in pain sometimes, and isn't

just a

> whiner. The other is guaifenesin. Since I've been taking that, my

life

> has gone from being one long flareup to occasional, much more

bearable,

> flareups.

>

> I wonder how much emotional factors do have to do with this. Not

> questioning whether or not the pain is " real " - of course it's

real. But

> how much of it was caused by our internal stress, always trying to

please

> someone who can't be pleased no matter what you do? I feel that

for the

> first thirty years of my life, I was constantly cursing myself.

You can't

> do that for so long without it having some effect, I don't think.

>

> Here's hoping we all have a good, fibro-free day,

>

> Sandy

>

> I sincerely believe that FMS and stress and our childhood tension

seriously are connected. Whenever situations with the Nada or BP

like personalities occur, I experience a pain reaction. It's like my

body is one big knot that's trying to hold back the anguish when

things are going lousy.

The UBM book discusses how FM and many other autoimmune disorders are

experienced by KOs.

>

September 22, 2002

Lots of us KOs have fibro. I do think it is influenced by living with a nada.

Like you said, we are so busy trying to make our nada happy and the rules kept

changing. The stress has to go somewhere. I would think though that as I learn

to deal with all the stress and anger my fibro would get better. So far that

hasn't been the case. I really like my MD and he does seem to believe in me,

but I worry that so many people think it's all in your head.

Tell me about you guaifenesin. I'm taking Ultracet which usually works as long

as I take it on schedule. If I forget and don't head off the pain, it starts

and is hard to get rid of. I do feel better much of the time, but I have found

I really need to pace myself.

Take care

September 22, 2002

At 07:54 PM 9/22/02 -0400, you wrote:

>Tell me about you guaifenesin. I'm taking Ultracet which usually works as

>long as I take it on schedule. If I forget and don't head off the pain,

>it starts and is hard to get rid of. I do feel better much of the time,

>but I have found I really need to pace myself.

Well, I kind of lucked out with it, because I hadn't had the fibro very

long. If you read any of the websites on fibromyalgia and guaifenesin,

they all say that in the beginning, it actually gets worse before it gets

better, but that's supposedly a good sign. But since I hadn't had the

symptoms for very long, I didn't have to go through that part of it. A

friend of mine did, but she stuck it out until it started helping and she

was able to go camping this summer without assistance for the first time in

years.

It's a mucolytic (? not sure of the spelling) and I don't know if anyone

knows why it works for fibromyalgia, but it seems to. I actually started

taking it under strange circumstances. We had gone on a retreat in a cabin

in the woods in January (I know NOW what I should have expected from doing

something so dumb, but I didn't then). It wasn't adequately heated, and I

got thoroughly chilled, and when we got back I got a flareup that lasted

for weeks. In February I got a really bad cold, and started taking over

the counter cold medicines, and after a week or so of taking those, my

fibro flareup went away! These OTC products had guaifenesin in them. I

remembered that I'd seen some websites in the past that mentioned

guaifenesin, but they looked kind of quackish so I didn't think much of

them. But it seemed to be working, and I hadn't been looking for a cure so

it wasn't placebo effect, either. So I started taking some plain

guaifenesin I had at home from a previous cold, and my flareup didn't come

back. I stopped for a while, and it came back. I took it again, and have

been taking it ever since. I don't know how it will do for other folks,

but as for me, it sure seems to work.

I still get aches and pains sometimes, but it doesn't have that peculiar

" reverberating " quality that my fibro pain had. Like a pain would get

started somewhere and just echo throughout my body. Now it just hurts

where it hurts.

One of my other friends who has it said that she got better when she

started restricting her carbohydrate intake, and I've noticed that when I

OD on bagels, I do feel worse. That was my Sunday custom for a while, and

I miss it. :-( But I'd rather feel good.

I'm glad we can share knowledge about this stuff and people don't think

we're a bunch of whiners. That's a very good thing. :-)

Take care,

Sandy

September 22, 2002

Hi All,

We have lots of KOs on the various Oasis lists who have toxic nadas and

who are suffering from stress-related autoimmune-type disorders --

including fibromyalgia, IBS, lupus, & etc. After reading Sandy's post I

went to my favorite website <www.google.com> and brought back the

following websites that contain info about Guaifenesin.

Quaifenesin websites:

http://www.guaidoc.com/

http://www.tidalweb.com/fms/guai.shtml

http://www.vulvarpainfoundation.org/guaifenesin_treatment.htm

http://guaifenesin.com/

http://www.sover.net/~devstar/guai.htm

http://www.rxlist.com/cgi/generic/guaiphen.htm

http://www.guaifenesin.com/net/

Also, for , I've included some websites about Ultracet:

http://www.pslgroup.com/dg/2040fe.htm

http://remedyfind.com/rm-2737-Ultracet.asp

http://www.gettingwell.com/drug_info/rxdrugprofiles/drugs/ULT1597.shtml

It seems that taking Guaifenesin in expectorant form is not recommended.

There's lots of info to read on those websites. I would recommend that

anyone planning on going that route share/discuss the info with their

doctor.

- Edith

Moderator/Facilitator - WTO Lists

Sandy (ModOasis list) wrote:

<<

At 12:17 PM 9/22/02 -0400, you wrote:

>Sometimes I hate this disease. And I think it's something else we can

>thank our crazy nadas for.

Wow - you guys have fibro too? Maybe you're right. There do seem to be

a lot of us.

I am thankful for two things - one is that I've finally found a good

pain specialist who believes in fibromyalgia and realizes that someone

with that plus a herniated disk is going to be in pain sometimes, and

isn't just a whiner. The other is guaifenesin. Since I've been taking

that, my life has gone from being one long flareup to occasional, much

more bearable, flareups.

I wonder how much emotional factors do have to do with this. Not

questioning whether or not the pain is " real " - of course it's real.

But how much of it was caused by our internal stress, always trying to

please someone who can't be pleased no matter what you do? I feel that

for the first thirty years of my life, I was constantly cursing myself.

You can't do that for so long without it having some effect, I don't

think.

Here's hoping we all have a good, fibro-free day,

Sandy

>>

September 22, 2002

The tendency for Fibro is genetic. It can be activated by an accident, painful

condition (OA), or stress [living with a NADA would qualify big time].

Guaifenesin works great for some people [tastes yucky though]. If it is going

to work for you it will work within 30 days. Didn't work for DH. Guaifenesin

helps to lubricate the muscle sheath so as the muscle work it doesn't bind as

much thus causing less strain on the muscles. And as Fibro is the muscles being

tense and not letting go, it helps to ease the muscles and allows them to repair

themselves more efficiently. Thus causing less pain.

ô¿ô

~

Jackie from NY

Hill8628@...

" This garment is made from 100 percent natural fibers. Any irregularity or

variation is not to be considered defective. Imperfections enhance the beauty

of the fabric! "

September 23, 2002

OA=osteoarthritis.

I have heard of the sensors getting turned on but haven't had much time lately

to do further research. It makes sense but it is hard to swallow that we are no

more pain than the average person. It is just that we feel it more. It sure

seems like a LOT MORE PAIN!

ô¿ô

~

Jackie from NY

Hill8628@...

" This garment is made from 100 percent natural fibers. Any irregularity or

variation is not to be considered defective. Imperfections enhance the beauty

of the fabric! "

Re: Re: Fibromyalgia

If the tendency is genetic, how does it fit with Chronic Fatigue? My aunt has

CFS. Also you said painful condition (OA), what does OA mean?

A book I was reading said they thought it might be caused by pain sensors in

the CNS getting turned on and not getting turned off, rather magnifying the

sensations of pain. Have you heard this?

September 23, 2002

If the tendency is genetic, how does it fit with Chronic Fatigue? My aunt has

CFS. Also you said painful condition (OA), what does OA mean?

A book I was reading said they thought it might be caused by pain sensors in the

CNS getting turned on and not getting turned off, rather magnifying the

sensations of pain. Have you heard this?

Re: Re: Fibromyalgia

The tendency for Fibro is genetic. It can be activated by an accident,

painful condition (OA), or stress [living with a NADA would qualify big time].

Guaifenesin works great for some people [tastes yucky though]. If it is going

to work for you it will work within 30 days. Didn't work for DH. Guaifenesin

helps to lubricate the muscle sheath so as the muscle work it doesn't bind as

much thus causing less strain on the muscles. And as Fibro is the muscles being

tense and not letting go, it helps to ease the muscles and allows them to repair

themselves more efficiently. Thus causing less pain.

ô¿ô

~

Jackie from NY

Hill8628@...

" This garment is made from 100 percent natural fibers. Any irregularity or

variation is not to be considered defective. Imperfections enhance the beauty

of the fabric! "

September 24, 2002

I agree, it is hard to swallow that we are in less pain than others. It does

seem like a LOT MORE PAIN. Especially days like today when I totally overdid it

this weekend and now I'm in lots of pain.

I have heard of the sensors getting turned on but haven't had much time lately

to do further research. It makes sense but it is hard to swallow that we are no

more pain than the average person. It is just that we feel it more. It sure

seems like a LOT MORE PAIN!

April 4, 2006

In addition to below, my knees actually seem to be at their worst last thing

at night when I'm in bed. Ibuprofen + solpadol doesn't touch the main at

all.

_____

From: Stillsdisease [mailto:Stillsdisease ]

On Behalf Of

Sent: 04 April 2006 20:29

To: Stillsdisease

Subject: Fibromyalgia

Hi all,

I'm hoping you can help me. Basically, I have a feeling I may have

Fibromyalgia and I'm interested to know your thoughts,

I've been having treatment (cyclophosphamide) every 4 weeks. A few months

ago my knees began to hurt and my doctor put me on Indomethacin. After a

while the pain went - probably 5 or 6 days. It then returned and I went on a

holiday to Rio (brazil) . the pain then returned and the indomethacin didn't

seem to make any difference. I was walking a lot more than normal. Anyway,

the symptoms I have is, achey all over. It seems to hurt more in the places

where my joints hurt as I came out of remission and also where they hurt

more the very first time (1999) I got stills.

Im on 10mg of pred daily and took 50mg earlier today but I haven't noticed

the improvement I'd expect - in fact hardly any improvement at all. From

what I read on the internet, Pred doesn't help with Fibromyalgia and also

the chemo that I have wont help either. I'm depressed as Solpadol

(paracetamol + codeine) doesn't seem to be helping me either.

The achey is a burning sensation (not a sharp stabbing pain). I didt sleep

much last night as my knees and left shoulder seem to be the worst -

although every joint (now the fingers) seems to be affected. I'm not sure if

I'm having a joint flare as I only went to Rio about 5 days after treatment

- and I usually feel much better within a week of having my treatment. I'm

speaking to my doc on the phone tomorrow, but I hear Fibromyalgia cant be

diagnosed by any blood tests and that doctors just give out tablets to stop

depression. I cant see how swollen, warm joints would improve with

ant-depression tablets. So could it be a flare? People who have Fibromyalgia

will probably have an idea as to which it is.

Regards, Steve

April 5, 2006

Dear ,

While Fibromyalgia is common in people with any kind of arthritis (secondary

fibromyalgia), this is not necessarily what's going on. Fibromyalgia is real,

and they are coming up with better diagnostic criteria for it. However, it's

also overdiagnosed. Some docs will say that you have it, just because they

don't know what's going on with you and the bloodwork isn't giving them easy

answers. It's easy for them to say this, and convenient, because it's a disease

with no cure, that's not life threatening, and no one agrees on how to treat it.

Some say, light exercise. Some others say no exercise at all, some say try

different diets and IMHO they just don't know much about it.

However, it doesn't cause joints that are hot to the touch. That is definitely

the Still's which from what you say is not under control. It sounds like the

cyclophosphamide is not working, and this is not unusual, to have to try

different immunosuppressants until they find one that works. Cytoxan

(cyclophosphamide) is a very powerful drug that can make you feel very sick even

when it does help you. There is even a " lifetime limit " on how much you can

take based on your weight, because it's very hard on the body.

I don't know what other second immunosuppressants they've tried, there's

Methotrexate, Imuran, Cyclosporine, Cellcept and then all the new anti TNF drugs

(Remicade, Kineret, Embrel, ect). I lucked out and am doing pretty good with a

low dose of Methotrexate.

The pain associated with fibro tends to be vague and all over. It can cause

joint pain, but it's a different pain than inflammation. It can feel like a

burning sensation, but there's no swelling and not hot to the touch. Very

different than a flare of Still's where the pain can be severe and localized in

one joint. Fibro can cause problems with every part of the body, brain (you

can't focus on anything), stomach (you can't tolerate many foods and alternate

between being constipated and having to go frequently) and especially a feeling

of no energy whatsoever, like someone just pulled the plug. As far as pain

relief for it, everyone is different. Personnally, just Tylenol does it for me,

one of the extended release 650 mg tabs a day. I have had no luck with

narcotics for this type of pain. Exercise ( walking, for me) does help for both

fibro and Still's (when you are able). The only other thing I have found to

help Fibro is to get enough sleep. That always helps me.

The other explanation for your pain could just be that there's been damage done

already from the Still's, which unfortunately will cause chronic pain even if

the disease is under control. Prednisone will not help with this, and neither

will the chemo. This is why so many of us have to take some kind of painkiller.

The antiinflammatories only take care of everything if no damage has been done,

and in order for this to happen you would have to get diagnosed right away,

which is unusual.

Hope this helps, and don't give up. We're all here for you,

-beth

dx with Still's about 2.5 years after onset

October 23, 2006

Hi Joan,

It's Lorie in Seattle here. I also suffer more with the fibro

issues of the Stills..if we want to call it that. I think that it is

all Stills, just a varying degree of it. My GP gave up on me a few

months back and I had to fire him, I am now without a GP. I go to the

University here and use the urgent care when I need too. I do have a

rheumy who treats the fibro/Stills/Osteo, but he only will see me 3

times a year, the rest of the time I am on my own, or urgent care. I

try to manage without painkillers as much as I can. I try to use low

exercise (stretching only, with heat packs) I also do swim therapay

when I can afford to do so. Believe it or not, walking does help..it

took me years of fighting back to come to realize that that was

really true. I always thought it would hurt worse afterwards...well

sometimes it does, I won;t say that it doesn't, but sometimes it

actually feels better. I don't go out and walk a mile, or even a half

a mile. I may walk 2 blocks and turn around and come back. Sometimes

I just wander around my yard. How is your sleep habits? That does

play a key factor in fibro. If I don't get at least 6-7 hours a night

(which isn't very often, more like 4-5) the fibro is worse, and the

longer i go without getting sleep continually for nights straight in

a row, the worse the fibro gets and the harder it is to manage, it

never really goes away either.....it just varies from day to day.

I sure hope that you find some relief. Everyone is different when it

come to the fibro also. My humble opinion would be to watch your

sleep habits and see how much or how little your are getting and

trying to keep moving, just a little bit everyday.

Take care,

Lorie in Seattle

PS. Do you ever hear from Caroline Baylis over there in Oxted? I've

tried to email her, but I have not heard from her in months. Also, we

will be in the UK next June (16-23: for sure) and (30- 6July..maybe).

October 23, 2006

Hi Joan in the UK;

Wow you sound like my self as I am getting about as much help as you

from the GP. What I do is get lots of rest and do not force my self to

do much any more. Being off work and not working any more dose make this

easier and the kids are all older the youngest is 16. So I go to bed

when tiered and walk up when I walk up that seams to help. I also use

flexural and an anti-inflammatory when it gets worse. I do know if I

push my self I do get a lot worse a faster also. But when I do for every

day I push it seams like I am down for two in bed or as a couch potato

Hugs all

Marty the red neck dragon fighter

October 23, 2006

hi all, i actually had fibro diagnosed way before stills, i thought i'd die from

the pain lol little did i know. today is really bad painwise because it's been 3

weeks since i had to stop my shots of mtx and enbrel, i start up again wed. and

i can't wait! yes i actually can't wait i also can't believe i just said that! i

have found that in addition to my reg. meds,when my fibro is bad i take an over

the counter anti-inflamatory every 3 hours, it helps me, so who knows hopefully

it will help somewhen else. good luck.

love elly

October 23, 2006

Lorie,

I agree--I think exercise is the best treatment for the fibro-like

muscle pains and for joint pain as well. Lots of studies to support

this.

Personally, when I'm hurting, the LAST thing I want to do is exercise,

but I just put myself on a regular swimming schedule of 45-60 minutes

of laps 4X/week and really try to stick to it. Most of the time it

sucks when I'm doing it, and sometimes for an hour or two afterwards

everything hurts worse, but then *poof*--I'll feel better, more lively

and more " loose " (hard to explain...you know, when that tight

broken-glass-in-your-kneecaps feeling goes away?). On the days that I

don't swim, I feel much worse. In fact, if the pool were closer or I

could afford a lap pool, I would swim every day!

in Maine

>

> Hi Joan,

> It's Lorie in Seattle here. I also suffer more with the fibro

> issues of the Stills..if we want to call it that. I think that it is

> all Stills, just a varying degree of it. My GP gave up on me a few

> months back and I had to fire him, I am now without a GP. I go to the

> University here and use the urgent care when I need too. I do have a

> rheumy who treats the fibro/Stills/Osteo, but he only will see me 3

> times a year, the rest of the time I am on my own, or urgent care. I

> try to manage without painkillers as much as I can. I try to use low

> exercise (stretching only, with heat packs) I also do swim therapay

> when I can afford to do so. Believe it or not, walking does help..it

> took me years of fighting back to come to realize that that was

> really true. I always thought it would hurt worse afterwards...well

> sometimes it does, I won;t say that it doesn't, but sometimes it

> actually feels better. I don't go out and walk a mile, or even a half

> a mile. I may walk 2 blocks and turn around and come back. Sometimes

> I just wander around my yard. How is your sleep habits? That does

> play a key factor in fibro. If I don't get at least 6-7 hours a night

> (which isn't very often, more like 4-5) the fibro is worse, and the

> longer i go without getting sleep continually for nights straight in

> a row, the worse the fibro gets and the harder it is to manage, it

> never really goes away either.....it just varies from day to day.

>

> I sure hope that you find some relief. Everyone is different when it

> come to the fibro also. My humble opinion would be to watch your

> sleep habits and see how much or how little your are getting and

> trying to keep moving, just a little bit everyday.

>

> Take care,

> Lorie in Seattle

>

> PS. Do you ever hear from Caroline Baylis over there in Oxted? I've

> tried to email her, but I have not heard from her in months. Also, we

> will be in the UK next June (16-23: for sure) and (30- 6July..maybe).

>

October 23, 2006