Re: topic_frameset.asp

[Guest guest]

Hi, I'm Kay; new to the list. I've been reading some of your posts, and wanted

to say that I appreciate the info for Cleve. Clin. and others. I have a

cerebral palsy-like congenital problem of back, hips, and legs, and now have

fibromyalgia and CFS, too. I found some good info on these, as a result of your

posts. Also, I like your sense of humor; I think, if we didn't have that, we'd

be dead by now! That and a love for music, help me stay sane when the pain's

too bad to sleep thru. That is, as sane as I'll ever be! Enjoy HR Neal's input

also. Are there others out there who have problems similar to mine--if so, let

me know--we can swap war stories and remedies. I'm so glad to find this list.

Thanks!

topic_frameset.asp

this is a site at Cleveland Clinic one of leading treatment centers in US.

These links, etc., are all on chronic pain.

This document contains frames, which cannot be edited. The original document

is attached.

[Guest guest]

Hi, I'm Kay; new to the list. I've been reading some of your posts, and wanted

to say that I appreciate the info for Cleve. Clin. and others. I have a

cerebral palsy-like congenital problem of back, hips, and legs, and now have

fibromyalgia and CFS, too. I found some good info on these, as a result of your

posts. Also, I like your sense of humor; I think, if we didn't have that, we'd

be dead by now! That and a love for music, help me stay sane when the pain's

too bad to sleep thru. That is, as sane as I'll ever be! Enjoy HR Neal's input

also. Are there others out there who have problems similar to mine--if so, let

me know--we can swap war stories and remedies. I'm so glad to find this list.

Thanks!

topic_frameset.asp

this is a site at Cleveland Clinic one of leading treatment centers in US.

These links, etc., are all on chronic pain.

This document contains frames, which cannot be edited. The original document

is attached.

[Guest guest]

You want " war " stories, we got 'em. Probably more than you want to hear. Just

went to new Rheumatologist today and she changed my diagnosis from Reiters

Syndrome to Chronic Fibromyalgia Syndrome (CFS). Y'all tell me all about CFS,

please, especially how you deal with the pain.

Ray in Virginia (hrn@...)

topic_frameset.asp

this is a site at Cleveland Clinic one of leading treatment centers in US.

These links, etc., are all on chronic pain.

This document contains frames, which cannot be edited. The original document

is attached.

[Guest guest]

You want " war " stories, we got 'em. Probably more than you want to hear. Just

went to new Rheumatologist today and she changed my diagnosis from Reiters

Syndrome to Chronic Fibromyalgia Syndrome (CFS). Y'all tell me all about CFS,

please, especially how you deal with the pain.

Ray in Virginia (hrn@...)

topic_frameset.asp

this is a site at Cleveland Clinic one of leading treatment centers in US.

These links, etc., are all on chronic pain.

This document contains frames, which cannot be edited. The original document

is attached.

[Guest guest]

Hi, Kay, can't remember if I responded to your message or not. Welcome to the

list! Cleveland Clinic seems to be a good site to go to for health/medical

information searches. Hope you enjoy browsing through the site. I don't always

have a good sense of humor...just ask my wife about last night! But I try to

look at the lighter side of things or the horrible stuff that most of us go

through each and every day would literally destroy our lives. Humor, jokes,

good stories, inspirational notes, are all essential parts of this list and its

service. Anyone got a good joke today?

Ray

topic_frameset.asp

this is a site at Cleveland Clinic one of leading treatment centers in US.

These links, etc., are all on chronic pain.

This document contains frames, which cannot be edited. The original document

is attached.

[Guest guest]

Hi, Kay, can't remember if I responded to your message or not. Welcome to the

list! Cleveland Clinic seems to be a good site to go to for health/medical

information searches. Hope you enjoy browsing through the site. I don't always

have a good sense of humor...just ask my wife about last night! But I try to

look at the lighter side of things or the horrible stuff that most of us go

through each and every day would literally destroy our lives. Humor, jokes,

good stories, inspirational notes, are all essential parts of this list and its

service. Anyone got a good joke today?

Ray

topic_frameset.asp

this is a site at Cleveland Clinic one of leading treatment centers in US.

These links, etc., are all on chronic pain.

This document contains frames, which cannot be edited. The original document

is attached.

[Guest guest]

In a message dated 5/7/99 12:47:06 AM Eastern Daylight Time, reese38@...

writes:

<< Hi, I'm Kay; new to the list. >>

Hi, Reese:

Welcome to the list. Of the symptoms you described, I have fibro and CFS.

Will be glad to help in any way I can - even if it's just a shoulder to lean

on.

{{{and pain-free wishes}}}

Carol

" In the little decisions of life, use your mind; in the big decisions of

life, use your heart. " [author unknown]

[Guest guest]

In a message dated 5/7/99 12:47:06 AM Eastern Daylight Time, reese38@...

writes:

<< Hi, I'm Kay; new to the list. >>

Hi, Reese:

Welcome to the list. Of the symptoms you described, I have fibro and CFS.

Will be glad to help in any way I can - even if it's just a shoulder to lean

on.

{{{and pain-free wishes}}}

Carol

" In the little decisions of life, use your mind; in the big decisions of

life, use your heart. " [author unknown]

[Guest guest]

In a message dated 5/7/99 1:17:43 AM Eastern Daylight Time, hrn@...

writes:

<< Rheumatologist today and she changed my diagnosis from Reiters Syndrome to

Chronic Fibromyalgia Syndrome (CFS). >>

Hi, Ray.

Have never heard of " chronic fibromyalgia syndrome. " Has anyone else?

Usually, I hear a diagnosis of FMS/CFS (fibro and chronic fatigue syndrome).

This is a new one on me.

I take lots of meds so that I can keep working an average of about 8 hrs/day

when I was used to about 10-12 hrs/day. Fortunately, I will be retiring

about Aug. 5 and will do consulting after that - hope to do about an average

of 2 weeks consulting per month over a year's time.

I'll email you privately my list of meds that keep me going.

{{{and pain-free wishes}}}

Carol

" In the little decisions of life, use your mind; in the big decisions of

life, use your heart. " [author unknown]

[Guest guest]

In a message dated 5/7/99 12:47:06 AM Eastern Daylight Time, reese38@...

writes:

> Hi, I'm Kay; new to the list.

Hi Kay,

Welcome, glad you are here. I am sure we will be leaning on each other often.

Mad.

[Guest guest]

In a message dated 5/7/99 12:47:06 AM Eastern Daylight Time, reese38@...

writes:

> Hi, I'm Kay; new to the list.

Hi Kay,

Welcome, glad you are here. I am sure we will be leaning on each other often.

Mad.

[Guest guest]

In a message dated 5/7/99 1:17:58 AM Eastern Daylight Time, hrn@...

writes:

> Chronic Fibromyalgia Syndrome (CFS). Y'all tell me all about CFS, please,

> especially how you deal with the pain.

Ray,

I don't know whether to congratulate you or lament even more. I have had CFS

(new term to me, I always called just Fibromyalgia) for at least the last 10

years. As far as treatment: I take 3 different kinds of antidepressants (low

doses). Additionally, I take Ultram and Bayer Extra Strength when I have

flares.

To ease the stiffness I often heat a buckwheat in flannel pillow for about a

minute or two and place it on the worst sites. Hot showers help. For me, that

is about all I can do that seems to be successful.

Mad in NY

[Guest guest]

In a message dated 5/7/99 1:17:58 AM Eastern Daylight Time, hrn@...

writes:

> Chronic Fibromyalgia Syndrome (CFS). Y'all tell me all about CFS, please,

> especially how you deal with the pain.

Ray,

I don't know whether to congratulate you or lament even more. I have had CFS

(new term to me, I always called just Fibromyalgia) for at least the last 10

years. As far as treatment: I take 3 different kinds of antidepressants (low

doses). Additionally, I take Ultram and Bayer Extra Strength when I have

flares.

To ease the stiffness I often heat a buckwheat in flannel pillow for about a

minute or two and place it on the worst sites. Hot showers help. For me, that

is about all I can do that seems to be successful.

Mad in NY

[Guest guest]

In a message dated 5/7/99 10:36:08 PM Eastern Daylight Time, hrn@...

writes:

> Fibromyalgia Syndrome is known as FMS or FM. If I screwed up on the

> acronym please forgive me. Also known as Chronic Fatigue & Fibromyalgia

> Syndrome (CFFS) or if just Chronic Fatigue Syndrome (CFS) Apparently I

> have both. So pick your own acronym to use. Just visited several

> web-sites and found a multitude of ways it is being referred to these

> days though Fibromyalgia Syndrome (FMS or FM) seems to be the most

> preferred in the more recent literature I could find.

> Ray

I think I like the term Chronic Fibromyalgia Syndrome.... Let's establish

this as the norm ... it states exactly what happens when you have it.

LOL

Mad

[Guest guest]

In a message dated 5/8/99 12:45:15 AM Eastern Daylight Time, reese38@...

writes:

<< Here in NC, insurance will cover them, if done by a physical therapist >>

Kay:

Where are you in NC? My DH and I have just moved to ville; but

right now and until I retire about Aug. 5, I am temporarily living with

parents in FL. Email me if you don't want it public. Thanks.

{{{and pain-free wishes}}}

Carol

" In the little decisions of life, use your mind; in the big decisions of

life, use your heart. " [author unknown]

[Guest guest]

Fibromyaglia Syndrome is known as FMS or FM. If I screwed up on the

acronym please forgive me. Also known as Chronic Fatigue & Fibromyalgia

Syndrome (CFFS) or if just Chronic Fatigue Syndrome (CFS) Apparently I

have both. So pick your own acronym to use. Just visited several

web-sites and found a multitude of ways it is being referred to these

days though Fibromyalgia Syndrome (FMS or FM) seems to be the most

preferred in the more recent literature I could find.

Ray

Re: topic_frameset.asp

> From: MadMad4JC@...

>

> In a message dated 5/7/99 1:17:58 AM Eastern Daylight Time,

hrn@...

> writes:

>

> > Chronic Fibromyalgia Syndrome (CFS). Y'all tell me all about CFS,

please,

> > especially how you deal with the pain.

> Ray,

> I don't know whether to congratulate you or lament even more. I have

had CFS

> (new term to me, I always called just Fibromyalgia) for at least the

last 10

> years. As far as treatment: I take 3 different kinds of

antidepressants (low

> doses). Additionally, I take Ultram and Bayer Extra Strength when I

have

> flares.

>

> To ease the stiffness I often heat a buckwheat in flannel pillow for

about a

> minute or two and place it on the worst sites. Hot showers help. For

me, that

> is about all I can do that seems to be successful.

>

> Mad in NY

>

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

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> Get " in synch! "

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>

[Guest guest]

Hi, Ray, welcome to the club(such as it is!), I looked up Reiters syndrome last

nite, as I'd never heard of it before. I don't know which is worse, that or

fibromyalgia and chronic fatigue. Both are disabling, and suck you dry--I hate

it! My dr. says to treat it symptomatically. I take Elavil at nite for

sleep--when I don't sleep, I just can't cope, and I'm sure you've been down that

road, too. I take a muscle relaxant, Flexeril, 3 times daily. It's the best of

the non-sedating ones for me, and I've tried them all over the years. I took

NSAIDS for several years--Orudis--and got an ulcer which required removal of 2\3

of my stomach 2 years ago, so now, they're out. It helped me a whole lot, tho;

gave me more energy, and knocked out the low grade fever. Now I use Tylenol and

Darvon for pain. As a nurse, I know drs. are loath to give narcotics, but as a

patient, I know I hurt all over, all the time, and I resent their attitudes. I

have finally found a dr. who is good about helping me. He recently put me on

Zoloft, for the fatigue--if I didn't have that, I'd be in bed for the day about

2pm. Now at least I can get thru dinner, with many breaks during the day. The

Zoloft helps, tho technically I'm not depressed, by raising levels of serotonin

and natural endorphins. These things help a lot, as do massages--I try to get

one every week or 2. Here in NC, insurance will cover them, if done by a

physical therapist. So, that's my tale; what's yours? Some other things which

help me are a sense of humor, music, and prayer and meditation.There's some good

info on the Cleve. Clin. site about FMS--check it out. Mine is also inherited,

from my mom, wh had the same symptoms, and was told it was all in her head My

older bro. has been diagnosed recently, after a sinus infection and Epstein-Barr

syndrome. The American Arthritis Assn. has put out a good book, too. Keep in

touch, and God bless you; I'll add you to my prayer list! (Thanks for

responding--I'm new to this whole computer stuff.) Kay

Re: topic_frameset.asp

You want " war " stories, we got 'em. Probably more than you want to hear.

Just went to new Rheumatologist today and she changed my diagnosis from Reiters

Syndrome to Chronic Fibromyalgia Syndrome (CFS). Y'all tell me all about CFS,

please, especially how you deal with the pain.

Ray in Virginia (hrn@...)

topic_frameset.asp

this is a site at Cleveland Clinic one of leading treatment centers

in US. These links, etc., are all on chronic pain.

This document contains frames, which cannot be edited. The original

document is attached.

[Guest guest]

Hi, again, Ray; found your other message. You sound like you've got a pretty

good handle on your disease. And, beat that horse to death!!!When you find a

good dr., who doesn't treat you like a street junkie, hang on for dear life! I

don't understand drs. attitudes, and, being blunt and outspoken as I am(to my

hubby's dismay), I will tell them about it real quick. It's my body, and I know

how it feels. One of my fervent wishes is for it to be a law that every med

student spend a few days in the hospital with something painful, and see how

they get treated! I tried the Ultram you mentioned, but it made me so nauseated

I quit it--rather hurt than feel sick! But I hope it works well for you. I

also try to stay ahead of it, by taking meds regularly. I use Tylenol and

Darvon 4 times a day, and get stronger stuff when I havre a flare-up. My dr.

has given me Lorcet to use when the pain is more than the Darvon covers. I'm in

the process of getting a scooter, which will cut down on walking a lot, and ,

conversely, will enable me to get out more. I have 3yrold and 1yr old

granddaughters, and I want to be able to go to the mall, or zoo, or theme parks,

or even the playground with them, without running the risk of falling, which is

frequent, as I have a bad balance problem. My dr. says to use a cane, which is

fine until it goes out from under me, too. Anyway, I seem to have diarrhea of

the keyboard tonite--hang in there! Kay

Re: topic_frameset.asp

Hi, Kay, can't remember if I responded to your message or not. Welcome to

the list! Cleveland Clinic seems to be a good site to go to for health/medical

information searches. Hope you enjoy browsing through the site. I don't always

have a good sense of humor...just ask my wife about last night! But I try to

look at the lighter side of things or the horrible stuff that most of us go

through each and every day would literally destroy our lives. Humor, jokes,

good stories, inspirational notes, are all essential parts of this list and its

service. Anyone got a good joke today?

Ray

topic_frameset.asp

this is a site at Cleveland Clinic one of leading treatment centers

in US. These links, etc., are all on chronic pain.

This document contains frames, which cannot be edited. The original

document is attached.

[Guest guest]

Thanks for your support! Would it extend to your taking it all away?? No,

didn't think so grin How do you handle yours? I have finally found a good

dr. who doesn't treat me like a junkie--helps a lot. Where are you? Please

keep in touch--maybe we can swap ideas and remedies.

Re: topic_frameset.asp

>From: MsVVarrior@...

>

>In a message dated 5/7/99 12:47:06 AM Eastern Daylight Time,

reese38@...

>writes:

>

><< Hi, I'm Kay; new to the list. >>

>

>Hi, Reese:

>

>Welcome to the list. Of the symptoms you described, I have fibro and CFS.

>Will be glad to help in any way I can - even if it's just a shoulder to

lean

>on.

>

>{{{and pain-free wishes}}}

>Carol

> " In the little decisions of life, use your mind; in the big decisions of

>life, use your heart. " [author unknown]

>

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

>ONElist: bringing the world together.

>http://www.onelist.com

>Join today!

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

>Know someone who could profit from our list? Send our direct sign-up URL:

http://www.onelist.com/subscribe.cgi/chronic_pain, or write us at:

chronic_pain @onelist.com

>

[Guest guest]

Hi. I'm in Asheville, about 20 miles from ville--welcome to the

neighborhood. Let me know when you get here.It's a beautiful place to live.

) Kay

Re: topic_frameset.asp

>From: MsVVarrior@...

>

>In a message dated 5/8/99 12:45:15 AM Eastern Daylight Time,

reese38@...

>writes:

>

><< Here in NC, insurance will cover them, if done by a physical therapist

>>

>Kay:

>

>Where are you in NC? My DH and I have just moved to ville; but

>right now and until I retire about Aug. 5, I am temporarily living with

>parents in FL. Email me if you don't want it public. Thanks.

>

>{{{and pain-free wishes}}}

>Carol

> " In the little decisions of life, use your mind; in the big decisions of

>life, use your heart. " [author unknown]

>

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

>What's " Grow to Give " ?

>http://www.onelist.com

>It's a new incentive program at ONElist. See homepage for details.

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>Know someone who could profit from our list? Send our direct sign-up URL:

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>

[Guest guest]

In a message dated 5/8/99 12:57:31 PM Eastern Daylight Time, reese38@...

writes:

<< I'm in Asheville >>

HOORAY!!! Almost neighbors. We're about 20 mins from airport. Would love

to meet you after I move my body up there permanently. Obviously, we would

meet in a public place in separate vehicles so neither feels uncomfortable.

I've met 4 online buddies that way. And, it's been fantastic.

Really looking forward to getting up there - in a way. But, that is a long

discussion better left for another time.

{{{and pain-free wishes}}}

Carol

" In the little decisions of life, use your mind; in the big decisions of

life, use your heart. " [author unknown]

[Guest guest]

Happy Mother's Day to you!

Ultram does not make me pain free. It does however, take the edge off. I take

2 50 mg doses every 6 hours.......when I cannot stand the flu symptoms any

more. For the flare-ups, nothing helps, at least nothing non narcotic...and

the DR thinks I am addiction prone..

Mad.

In a message dated 5/8/99 10:25:21 PM Eastern Daylight Time, reese38@...

writes:

> From: reese38@...

>

> All the drs. think that Ultram is a wonder fix for our problems, but the

> wonder for me, after 3 months, was when was it going to work, and stop

> making me sick at my stomach. Does it do much for anyone else, and if so,

> at what dosage? I use heat and ice both, in different areas, and sleep

> under an electric blanket, with A|C in summer. Hope every mom has a great

> day tomorrow, hopefully with pain at a minimum!!!

[Guest guest]

All the drs. think that Ultram is a wonder fix for our problems, but the

wonder for me, after 3 months, was when was it going to work, and stop

making me sick at my stomach. Does it do much for anyone else, and if so,

at what dosage? I use heat and ice both, in different areas, and sleep

under an electric blanket, with A|C in summer. Hope every mom has a great

day tomorrow, hopefully with pain at a minimum!!!

Re: topic_frameset.asp

>From: MadMad4JC@...

>

>In a message dated 5/7/99 1:17:58 AM Eastern Daylight Time, hrn@...

>writes:

>

>> Chronic Fibromyalgia Syndrome (CFS). Y'all tell me all about CFS,

please,

>> especially how you deal with the pain.

>Ray,

>I don't know whether to congratulate you or lament even more. I have had

CFS

>(new term to me, I always called just Fibromyalgia) for at least the last

10

>years. As far as treatment: I take 3 different kinds of antidepressants

(low

>doses). Additionally, I take Ultram and Bayer Extra Strength when I have

>flares.

>

>To ease the stiffness I often heat a buckwheat in flannel pillow for about

a

>minute or two and place it on the worst sites. Hot showers help. For me,

that

>is about all I can do that seems to be successful.

>

>Mad in NY

>

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

>Get " in synch! "

>http://www.onelist.com

>With the ONElist Shared Calendar Feature. See homepage.

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

>Know someone who could profit from our list? Send our direct sign-up URL:

http://www.onelist.com/subscribe.cgi/chronic_pain, or write us at:

chronic_pain @onelist.com

>

[Guest guest]

Hi Ray,

At 01:13 AM 5/7/99 -0400, you wrote:

>Y'all tell me all about CFS, please, especially how you deal with the pain.

To paraphrase an old description of army food (can anyone guess

the 4 word quote?) same symptoms, different Dx.

Am trying to say that you have been dealing with problems that are

old & familiar to you. why not sort out what issues you have about symptom

control into solved & unsolved categories. Then you ask for solutions for

the unsolved problems, and see if any improvements can be made to older

solutions.

I don't mean to be simplistic, but it's still the same body you

have been wrestling with for years. Reminds me of when I went to a new

rheumatologist for a second opinion some years ago. Have been Dx'd as

ankylosing spondylitis. Has been called 12 different things. Never the same

from doctor to doctor. The new rheumy got real excited when he found some

flaking skin on the breastplate. Seems this is a confirming symptom for

psoriatic arthritis, which has a clear cut treatment. The skin problem and

the Dx both were finished in about a week. The doc got real excited about

my maybe having something more treatable. I did not. I am not so easily

accepting of medical findings anymore.

What's the difference? You still have the same lousy body!

Ken

[Guest guest]

In a message dated 5/9/99 9:50:53 AM Eastern Daylight Time, MadMad4JC@...

writes:

<< For the flare-ups, nothing helps, at least nothing non narcotic...and

the DR thinks I am addiction prone.. >>

Mad:

This is an uh-oh. Pushed one of my " hot " buttons. Have you gotten any of my

links or articles about addiction vs. physical dependency? If not, let me

know I and I will send them. Your doc is obviously not up on the latest.

Bottom line: an addict will take meds for any and all reasons just to get a

buzz, a high, whatever. Only 1% of people who truly need pain meds ever

become addicted. The other 99% may become physically dependent and have to

wean off one and go to another, but they do not become addicts. Reason?

They would NOT take the pain meds if they didn't need them.

My DH and I both had chronic migraines with very similar symptoms. The same

neurologist gave DH anything he could to help with the pain. Told me I just

wanted drugs - even though my internist told him I had fibro. Finally got to

a rheumatologist who has worked with me and I am now able to work about an

average of 8 hrs a day [lower than my usual 10 or more].

Let me know about the articles and links.

{{{and angel wishes}}}

Carol

" In the little decisions of life, use your mind; in the big decisions of

life, use your heart. " [author unknown]