New Member

[Guest guest]

Good to meet you, Barb. I hope this list helps you out.

Barb wrote:

>

>

> Hi all,

>

> I just found this list, and the moderator has invited me to introduce

> myself.

>

> My name is Barb and I have had " suspected " fibromyalgia for several

> years, and it has just been confirmed by my rheumatologist. I also have

> psoriatic arthritis, although I believe the fibromyalgia is much more

> painful!

>

> I USED to be a dogsled sprint racer, figure skater, long-distance

> runner, tennis player, synchronized swimmer, diver. My whole life, my

> hobbies, everything worthwhile was physical. It isn't anymore, as it

> probably isn't for many of you. WOW - didn't know this intro. was going

> to be so hard on me. Funny how one tries to put this stuff " away " in the

> back of one's mind and and then to write it brings it very painfully to

> the forefront, so I think I'll have to stop here.

>

> Anyway, I'm here to learn, hopefully to share, and when I'm ready,

> support.

>

> Thanks all, and going (temporarily) back to lurk mode.

>

> Barb

>

> VIP

> Add or view links about fibro/CFS.

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>

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--

:0)

An argument with your spouse is a loving moment lost forever.

Mom to Bear, Wife to

[Guest guest]

I guess i just fell into this one list when i was wanting information about

cfs. I am a nurse and i have been to several drs. they all think i am

mental(I am after listening to the medical field and their diagnoses) I

sometimes feel like no one listens and no one cares not even your family.

It*s true someone has to walk in you shoes. Thanks for e-Mail now i know i am

not alone even though i havent been diag.

[Guest guest]

good to have you new person from texas. None of promlems until 50 but so far

i a m batting zero about findind a good dr. I have almost exactly the same

problems you have lol Hearing from other people does help you livel of

anxiety and depression. I think they should have groups in all states such as

aa groups. that would help people to talk in a group wiith a good leader that

understood. take care

[Guest guest]

In a message dated 4/14/00 9:35:32 PM Pacific Daylight Time,

LenhartROCKO@... writes:

<< I,m a person of great strength and up until now I have

fought hard and prevailed, mainley due to the love of my children. But now I

feel very tired of fighting this, of being strong. I feel like giving up I

feel like nobody can understand what I,m going through. >>

Hi Tammy,

We have all felt like this at one time or another. I too am a mother of 2.

When I first got ill in 93 my children were still very young. I felt like

nothing was going to get in the way of me being a good mother to them and

being a good employee on my job. I too got sicker and at one point came

close to death. After that I decided not to seek treatment. Something

clicked on me one day and I came to my senses and realized that I was more

important to me than my job, and that I would be no good to my children if

were dead. I am on disability now and have been since 98. I have continued

get worse, but I take it all in stride. I feel like I can't loose it

everytime something happens because if I do I won't have the strength to

fight the next crisis that comes along. I take the good days and enjoy them,

because you never know when a bad day or month will come along. Most

importantly being home sick also means I get see my children more and spend a

lot more time with them. This something I couldn't do when I worked. GOD

BLESS YOU, try to stay positive, and remember to take whatever good days you

have and run with them.

Marie

[Guest guest]

I too had the Peustow. It did not work. Mine was too far gone. I had a whipple 3

months later. They removed 60% of my pancreas and after a bought of bleeding

ulcers in my small intestine, i'm doing 100% better. Discuss this option with

you GI docs.

>

____________________________________________________________________

For the largest MP3 index on the Web, go to http://mp3.altavista.com

____________________________________________________________________

[Guest guest]

<< . Idon't have many friends. People just don't always understand my pain.

>>

Hi Bobbie..........I understand what you mean, Only a few people understand

me, so I only share it now with my true friends, But my aquaintence type

friends have no clue, cause I just don't tell them.They Know that something

is wrong when the pain is so severe that I am almost in tears, but other than

that I just keep my mouth shut :-)

Shirlie

P.s. I lived in Arkansas a long time ago I lived in sville Where are

you from?

[Guest guest]

Hi Bobbie and everyone here...My name is Anne, 45, divorced with 2 daughters

living in S FL..I've been diag with FM recently and since then have been

unable to find a single doctor here to treat me, they look at me like I'm a

hell of a actress or a lazy woman....It kindda makes ya wonder sometimes if

we are meant to be helped or are we put on this earth to suffer for some

unknown reason?

Anne

[Guest guest]

Hi Shirlie,

I'm in the Cabot area. That is about 20miles NE of Little Rock.

Bobbie

[Guest guest]

Hi Ann,

Nice to meet you. I have had trouble with doctors. First they

over-medicated me, then they said I was depressed and needed psychiatric

help, I just keep hoping that someday someone will be able to do

something about this terrible disease.

Bobbie

[Guest guest]

Re: New Member

Hi Ann

thank you for your Email,

Dont you let any DR. run over you, in strenght and numbers we are

growing,and drs. listenening , i finally got put on Dr. nicolsons antibiotic

treatment ,hes having 70% cure rate with people getting weell,no one calim

anything else with all the treatment I have tried, its not easy ,it takes

time, and when first on it u wish u were dead, its hard,if want more inf

check out www.immed.org and www.drmirkin.com

keep in touch

God Bless

Eileen

> Hi Bobbie and everyone here...My name is Anne, 45, divorced with 2

daughters

> living in S FL..I've been diag with FM recently and since then have been

> unable to find a single doctor here to treat me, they look at me like I'm

a

> hell of a actress or a lazy woman....It kindda makes ya wonder sometimes

if

> we are meant to be helped or are we put on this earth to suffer for some

> unknown reason?

>

> Anne

>

>

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

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>

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>

>

>

[Guest guest]

>Hi ,

I live to your west, North York. My mom lives in Scarborough and I

have friends in Pickering which isn't too far from you.

I agree ... most people I know don't understand ... they think they

do, but they don't really. A true friend means being there for

someone in good and bad, and I have found I have lost a few friends

because it hasn't been convienient for them. For example, I have to

admit that I don't go to as many social events as I used to. It is

not always easy to make plans because you don't know how you are

going to feel day to day. At first, I wouldn't accept this and kept

trying to keep up to everyone else, but then I would get really sick

for weeks. So now, I sometimes have to decline invitations to things

when I'm having a flare and I think some of my friends have taken

offence and think I don't care when I don't attend. You have to

accept your limitations with this disorder and a true friend should

understand this.

Has anyone else experienced this with friends?

Jacquie

I only discuss my health problems with people I feel will understand.

If I

> feel they won't, then I say I have CFS, Fibro and the fainting

disorder. I

> don't go into detail about the illnesses. Most people I have

encountered

> are great about trying to understand and many truly do.

>

>

> ----------

> > From: squirlieq@a...

> > To: egroups

> > Subject: Re: New Member

> > Date: Tuesday, 25 April, 2000 8:14 PM

> >

> > In a message dated 4/25/00 4:56:31 PM PST, sheltieluv2@w...

writes:

> >

> > << . Idon't have many friends. People just don't always

understand my

> pain.

> >

> > >>

> > Hi Bobbie..........I understand what you mean, Only a few people

> understand

> > me, so I only share it now with my true friends, But my

aquaintence type

> > friends have no clue, cause I just don't tell them.They Know that

> something

> > is wrong when the pain is so severe that I am almost in tears,

but other

> than

> > that I just keep my mouth shut :-)

> >

> > Shirlie

> >

> > P.s. I lived in Arkansas a long time ago I lived in

sville Where

> are

> > you from?

> >

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

------

> > Your high school sweetheart-where is he now? With 4.4 million

alumni

> > already registered at Classmates.com, there's a good chance you'll

> > find her here. Visit your online high school class reunion at:

> > http://click./1/3139/3/_/442796/_/956711739/

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

------

> >

> >

> > VIP

> > Add or view links about fibro/CFS.

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> >

> >

[Guest guest]

I only discuss my health problems with people I feel will understand. If I

feel they won't, then I say I have CFS, Fibro and the fainting disorder. I

don't go into detail about the illnesses. Most people I have encountered

are great about trying to understand and many truly do.

----------

> From: squirlieq@...

> To: egroups

> Subject: Re: New Member

> Date: Tuesday, 25 April, 2000 8:14 PM

>

>

>

> << . Idon't have many friends. People just don't always understand my

pain.

>

> >>

> Hi Bobbie..........I understand what you mean, Only a few people

understand

> me, so I only share it now with my true friends, But my aquaintence type

> friends have no clue, cause I just don't tell them.They Know that

something

> is wrong when the pain is so severe that I am almost in tears, but other

than

> that I just keep my mouth shut :-)

>

> Shirlie

>

> P.s. I lived in Arkansas a long time ago I lived in sville Where

are

> you from?

>

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

> Your high school sweetheart-where is he now? With 4.4 million alumni

> already registered at Classmates.com, there's a good chance you'll

> find her here. Visit your online high school class reunion at:

> http://click./1/3139/3/_/442796/_/956711739/

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

>

>

> VIP

> Add or view links about fibro/CFS.

> http://www.onelist.com/links/

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>

> LIST OWNER:oa2@...

>

>

[Guest guest]

Thank You ,for your welcome e-mail.I live on Long Island (NY) and was dx with fibromyalgia a year and a half ago. I'm 51 and no longer work because of the FMS/CFS.I look forward to meeting and chatting with anyone who cares to discuss their life with our above shadow!

Thanks Again,

Judy

[Guest guest]

I live in England, and I'm sure that our doctors haven't got a clue,

I think the only way they would understand (or believe) the pain, is

if they actually had fms themselves.

Caron

> Caron,

> Gee, it sounds like you had doctors like mine. Hopefully you don't

live in a mideval state like I do where doctors don't believe in

FMS/CFS, and the few that do don't believe it is disabling!

>

> Welcome to the list!

>

> Pam

>

>

>

> new member

>

>

> hello,

> my name is Caron, I am married and have a two year old son. I

was

> diagnosed with fms 2 years ago. Since the diagnosis was made I have

> had virtually no medical help either from my G.P or the

rheumatology

> specialist who made the diagnosis, The specialist is not interested

> (his last words to me were " go and do some aerobic exercise " ) I

> couldn't do aerobics before my illness,although I did swim and do

> weight training.

> One thing he did tell me was that I will get better in

time,

> unfortunately he didn't tell me how much time, he certainly didn't

> tell me the condition would get worse before it got better.

>

>

>

>

>

>

>

>

> VIP

> Add or view links about fibro/CFS.

> http://www.onelist.com/links/

>

> TO unsubscribe.

> Go to: http://www.onelist.com/ Log in:

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>

> LIST OWNER:oa2@c...

[Guest guest]

Caron,Gee, it sounds like you had doctors like mine. Hopefully you don't live in a mideval state like I do where doctors don't believe in FMS/CFS, and the few that do don't believe it is disabling! Welcome to the list!

Pam new memberhello, my name is Caron, I am married and have a two year old son. I was diagnosed with fms 2 years ago. Since the diagnosis was made I have had virtually no medical help either from my G.P or the rheumatology specialist who made the diagnosis, The specialist is not interested (his last words to me were "go and do some aerobic exercise") I couldn't do aerobics before my illness,although I did swim and do weight training. One thing he did tell me was that I will get better in time, unfortunately he didn't tell me how much time, he certainly didn't tell me the condition would get worse before it got better.VIPAdd or view links about fibro/CFS.http://www.onelist.com/links/ TO unsubscribe.Go to: http://www.onelist.com/ Log in:Go to this list: Click on your name: Select your choice.LIST OWNER:oa2@...

[Guest guest]

Hi Debbie,

I to am from Washington I am living in Spokane, how about you?

Welcome to the group, I think that you will like it :-)

Shirlie

[Guest guest]

Hi Debbie,

I to am from Washington I am living in Spokane, how about you?

Welcome to the group, I think that you will like it :-)

Shirlie

[Guest guest]

Pam,

Same to you and May God Bless you and Keep you also.

Debbie

Re: New Member

Welcome, Debbie.

Soft hugs and may you always have sunshine!Pam

VIPAdd or view links about fibro/CFS.http://www.onelist.com/links/ TO unsubscribe.Go to: http://www.onelist.com/ Log in:Go to this list: Click on your name: Select your choice.LIST OWNER:oa2@...

[Guest guest]

Pam,

Same to you and May God Bless you and Keep you also.

Debbie

Re: New Member

Welcome, Debbie.

Soft hugs and may you always have sunshine!Pam

VIPAdd or view links about fibro/CFS.http://www.onelist.com/links/ TO unsubscribe.Go to: http://www.onelist.com/ Log in:Go to this list: Click on your name: Select your choice.LIST OWNER:oa2@...

[Guest guest]

Great to have you here. I am glad good things are going around about this

list. As moderator since last fall, I take great pride in the list. However,

the listmates deserve all the credit. They keep it all going!

Debbie Gunn wrote:

Hi Everyone. My name is Debbie and I have had Fibro for four years

now. I was with another group but due to circumstances that I would

prefer not to discuss I have left that group. I have heard wonderful

things about this group and hope that I can be a supportive member.

I live in Washington State and am currently in search of a decent doctor,

but have an appointment set up for July 12th, and am hoping it will end

my search. I'm grateful that there are groups such as this for uplifting

each other and for up to date information on breakthroughs for fibro.

I look forward to adding whatever I can to this group.Debbie

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--

Early morning cheerfulness can be

extremely obnoxious- Feather

Mom to Bear, Wife to

[Guest guest]

Meg,

welcome to the group we are always glad to meet new people who share are

pain and frustration. You will find a lot of people are very knowledgable i

find their posting s help me a great deal. Even if i don't feel like posting

sometimes just knowing they are there helps make my load a little lighter.

Again welcome!!!

[Guest guest]

Glad to have you here. Here we definitley understand those days where we don't

feel like doing anything. This is a great group. I am sure you will like it

here.

Peggy Lowell wrote:

> Hi!

>

> I have been diagnosed with CFS and Fibromyalgia. I've been sick since

> 1990. I live alone and was spending a pretty lonely Sunday so I decided to

> find a list for people with fibromyalgia. I am not working full time, but

> have a business working in my home part time. I live mostly on Social

> Security Disability, but am able to supplement that a little with this

> homebased soapmaking business. Some days feeling lousey every day just

> gets a little old and I think that maybe I need a place to talk about it

> more than I can with my family and friends who don't have the illness. I

> am 47 years old with no children. I live in a small town in Wisconsin

> called River Falls. I look forward to listening and learing more about

> everyone. I've been dealing with a low grade depression. I'm on an

> antidepressant and have been for some time, but some days it seems like its

> not working so well. I have an appointment to see my doctor so I will be

> dealing with it soon.

>

> Thanks again for the warm welcome.

>

> Peggy Lowell

>

> At 08:33 PM 07/09/2000 -0400, you wrote:

> >Hi there,

> >I want to take this opportunity to welcome you to the group. We talk

> >about daily struggles and victories when dealing with these illnesses.

> >Sharing is the key to coping.

> >Feel free to post to the list.We would love an introduction to be sent

> >to egroups as well as future posts.

> >Thanks for joining. We look forward to getting to know you better.

> >I have compiled a member list with members name's, e-mail addresses,

> >marital

> >status, etc. If you would like to be added send me the information and I

> >

> >will gladly add you. This is to help members remember each other by name

> >or

> >where they live, etc.

> >List Hostess and Co-Moderator,

> >

> >

> >

> >

>

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

> Make new friends, find the old at Classmates.com:

> http://click./1/5530/6/_/442796/_/963192679/

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>

> ~*~CHAT TIME:~*~

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> Day Eastern 4 PM, Central 3 PM, Mt 2 PM Pacific 1 PM

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> WHERE: /chat/

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[Guest guest]

Margie,

Sorry it has taken me so long to reply, I have been out of town for the last two weeks. I have BC/BS of Tennessee, but it is part of the Federal Program. I suggest you call BC/BS of California and they can tell you what kind of coverage you will have. Their number is 1-. Chuck at the JRI is also very helpful. Dr. Amstutz's office took care of the pre certification.

Good Luck,

At 01:23 PM 8/9/00 -0700, you wrote:

>>>>

> Thanks for your reply. Do I understand you correctly that you have BC/BS Federal Program, not BC/ BS Tennessee? If so, you've really boosted my spirits. Did Dr. Amstutz's office take care of getting BC/BS California approval, or did you have to do that from home through your local BC/BS Federal representative? Margie Original Message-----

> From: dlwallesper <dlwallesper>

> To: surfacehippyegroups <surfacehippyegroups>

> Date: Sunday, August 06, 2000 5:32 PM

> Subject: Re: New member

>

>

> > Margie,

> >

> > I had my right hip resurfaced by Dr. Amstutz last February. So far I am absolutely thrilled with the result. I am very active, no pain, and sleeping like kitten. I also have BC\BS under the federal program. I live in Tennessee, but BC\BS of california covered the surgery as if I had it in Tennessee. So far so good.

> >

> > I'd be happy to answer any specific questions about my experience.

> >

> >

> >

> > At 09:39 PM 8/4/00 -0700, you wrote:

> > >>>>

> >

> >

> > > I am scheduled for bilaterial hip surface replacements with Dr. Amstutz on November 16th. I'll be traveling from land to California. Chuck told me months ago that my insurance co. (Blue Cross/Blue Shield Federal) had denied one of their patients. Has anyone had success with BC/BS Federal paying for this surgery? I'd also like to ask if everyone is satisfied with the results of their surgery and if they would do anything differently now that it's behind them. Any advice would be appreciated. Thanks so much. Margie

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

> > > <http://click./1/7750/7/_/819984/_/965439704/> border="0" alt="" src="http://adimg./img/7750/7/_/819984/_/965439704/benefitsblue_new5.gif">

> > >

> > >

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

> > >

[Guest guest]

My understanding is the Glucosamine / chondroitin is good to protect

cartilege.

So if you haven't any cartilege left - it won't do much good. It won't stop

any bone-on-bone pain.

Although it may well protect your other joints?

Steve was advised not to use Ibuprofen as it increases the rate of

deterioration by miles.

Get yourself on rhus tox and arnica tablets before the op - about a week?

and lots of veggies (green).

[Guest guest]

At 02:50 AM 12/14/2001 -0000, you wrote:

I,m thinking about trying

>Glucosamine/Chondroitin to help me through my work day.Can anybody

>give me some results of those.

Randy,

Glucosamine and Chondroitin are usually better for repairing or at least

slowing down the loss or cartilage. I had much better luck with MSM

(methlysulfonylmethane). It purportedly helps many tissues (muscles,

nerves, etc), not just cartilage. I buy mine by the pound and fill empty

capsules as it is MUCH less expensive that way, and I need to watch nearly

every penny these days. It certainly didn't keep me pain free, but was a

definite help in the pre-surf days. I still take it to help the muscles

heal and keep the rest of me in good shape.

P.S. Cigna has a reputation for being slow, so slow doesn't necessarily

mean the answer is no.