Intro

[Guest guest]

Petra

the support here is wonderful. I am still new with fibro. I was only

diagnosed 6 months ago. welcome Pam

>

>Reply-To: egroups

>To: < egroups>

>Subject: Intro

>Date: Mon, 25 Sep 2000 21:48:25 -0400

>

>Hi everyone,

>

>I just joined this list last night and I thought I'd write an intro. I'm

>Petra, 39 and am married to Rick, we have 3 kids. I moved to the US from

>the Netherlands 15 years ago, with my parents. Actually my parents moved a

>year before me. When I was 22, I started having weird headaches and being

>achy all over. I started to feel dizzy and couldn't really function

>normally anymore. In Holland I was told it was all in my head and to get

>over it. Ok, easier said than done. It got worse and worse. So my dad

>brought me to the US with him and took me to all kinds of doctors. They

>did

>cat scans, MRI's etc. couldn't find anything. Finally I was sent to a

>neurologist and diagnosed with fibromyositis (now fibromyalgia). Ok, so

>what can we do against it? Nothing. That was encouraging!

>In the years since, I have had terrible times, where I had to be bed ridden

>and take disability leave from my job and times where I've felt almost

>normal. Funny enough, I felt quite well during my pregnancies.

>In 1998 I discovered that exercising really helps me keep the pain

>manageable, so I've been on an exercise diet for 2.5 years now.

>The changing of the seasons always brings the symptoms on full force, so

>the

>current cold weather and pain thread really hits home for me.

>My husband travels a lot and sometimes it's all I can do to just survive.

>I've held off giving in to the fact that I do have a disease and sometimes

>may need support from fellow sufferers until now, but after reading some of

>the messages, I can already tell that the support will be great and that

>it's nice to see that I'm not alone.

>That's it for now.

>

>

>Petra (mailto:Petra@...)

>Maaammmiiieee!!! to Katja (14 Mar '90), Kai (29 Apr '92) and Saskia (11

>Dec

>'95)

>Visit us at http://www.kjsl.com/~petra

>~*~ " Cleaning your house while your kids are still growing is like shoveling

>the walk before it stops snowing. "

>-----Phyllis Diller ~*~

>

>

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[Guest guest]

Hi Petra,and Welcome!

I was dx with Fibro/Myofacial Syndromes, also have RLS/CFS/IB.

This

is the place to get support alright! All comes to rescue when you

need

them. And you're right, It is nice to know you're not alone.

With a warm welcome............jasmintine:)(morton58)

> Hi everyone,

>

> I just joined this list last night and I thought I'd write an

intro.

I'm

> Petra, 39 and am married to Rick, we have 3 kids. I moved to the

US

from

> the Netherlands 15 years ago, with my parents. Actually my parents

moved a

> year before me. When I was 22, I started having weird headaches

and

being

> achy all over. I started to feel dizzy and couldn't really function

> normally anymore. In Holland I was told it was all in my head and

to get

> over it. Ok, easier said than done. It got worse and worse. So

my

dad

> brought me to the US with him and took me to all kinds of doctors.

They did

> cat scans, MRI's etc. couldn't find anything. Finally I was sent

to

a

> neurologist and diagnosed with fibromyositis (now fibromyalgia).

Ok, so

> what can we do against it? Nothing. That was encouraging!

> In the years since, I have had terrible times, where I had to be

bed

ridden

> and take disability leave from my job and times where I've felt

almost

> normal. Funny enough, I felt quite well during my pregnancies.

> In 1998 I discovered that exercising really helps me keep the pain

> manageable, so I've been on an exercise diet for 2.5 years now.

> The changing of the seasons always brings the symptoms on full

force, so the

> current cold weather and pain thread really hits home for me.

> My husband travels a lot and sometimes it's all I can do to just

survive.

> I've held off giving in to the fact that I do have a disease and

sometimes

> may need support from fellow sufferers until now, but after reading

some of

> the messages, I can already tell that the support will be great and

that

> it's nice to see that I'm not alone.

> That's it for now.

>

>

> Petra (mailto:Petra@k...)

> Maaammmiiieee!!! to Katja (14 Mar '90), Kai (29 Apr '92) and

Saskia

(11 Dec

> '95)

> Visit us at http://www.kjsl.com/~petra

> ~*~ " Cleaning your house while your kids are still growing is like

shoveling

> the walk before it stops snowing. "

> -----Phyllis Diller ~*~

[Guest guest]

welcome Mitzi

>

>Reply-To: egroups

>To: egroups

>Subject: intro

>Date: Wed, 27 Sep 2000 01:43:58 -0000

>

>Hello group..My name is Mitzi and a newbie to this group..I had

>earlier tonight posted with a question i hope someone might help me

>with but to give a short intro on me here~I'm a 41 yr young female

>with Rsd of 15 yrs but recently found several Drs in my new home

>state of Fl that believes i have Fms. Like many,many of the symptoms

>of Fms..SOME of my symptoms include..severe stiffness in muscles and

>joint swelling..especially in the A.m and in my arms,back and

>hips ;to a point i can no longer sleep in my bed..the pain is

>exstreme and can't seem to physically roll over in bed many a nights

>from hip pain and some ohter weird forces that feel like i'm

>paralyzed in my hips..weird!!it passes after i'm awake..I was just

>put on Baclofen for stiffness,pain and spasticity for it but so

>far..no change.Have numbness on and off in my big toes and most of my

>fingers and hand,along with much electrical shocks; often..very,very

>bad fatigue,had bad vertigo before for months,very impared memory and

>loss of words,rashes,IBS on and off,repeated blader

>problems,allergies of everykind,immune problems,hormone

>problems,chest pain, and overall body pain constantly,swelling,cold

>skin in limbs,and much more;Luckily i have not had depression due to

>the stresses of Possible Fms..But i went thru that period adjustment

>with Rsd.I live alone so it is very hard at this point to get thru

>daily living chores..i'm lucky if i have the strength to do my

>dishes..then i'm excited like i accomplished something big..how sad

>that sounds;then i'm wwiped out exausted with fatigue again!!

>lol..anyhow..I'm here for support and further info anyone can give

>herein~hello to all and thanks for having me on your list!! Mitzi

>

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[Guest guest]

Hi ,

I think if I were you (my opinion of course) I would definetly have to find

a new doctor.. I have literally jumped off of doctors tables,told them to get

the hell out of the room while I got dressed,and then proceeded to tell them

what a waste of time this was as far as an office visit and a waste of my

insurance money.. I have also had to write head of administrations when the

doctors were working in the hospitals.Of course nothing was done on anyone's

part but it made me feel better(the letters and telling the doctors exactly

what I felt in that office) When they started questioning the family tree and

I told them noone had any known mental illnesses,and they insisted that they

felt it was also a major anxiety order and compulsive disorder that was it

for me.. I too am seeking a new doctor. I have been on a waiting list here on

wv for two months now to see the pain clinin.. From what I have heard, this

will also be a waste of time and money but I have to see on my own. I use to

be on ultram but had the exact same things as far as side effects as you did

if I took more than 1/2 dose. Of course that doesn't even dent the pain..

Anyways,only my two cents worth. I know you are at a great place here to

vent.. Hope all is well

Terri

[Guest guest]

Hi there ,

My name is and I am co-moderator of this group. I am 23 yo and I have

Fibro and CFS as well as a fainting disorder.

If you have any questions, feel free to ask.

GreenEyez1978@... wrote:

> Hi everyone,

> My name is Connell and I'm 22. I have been on the list for a

> couple of months but I haven't said anything yet. I live in Chico, CA but I'm

> moving to Tucson, AZ in February. I just got married about three weeks ago to

> someone who completely understands that my activity is limited because of my

> FM.

> I'm seeing a pain specialist who I thought was a great doctor. He listens

> to his patients and he is not afraid to prescribe pain meds. Then he asked me

> if I have any compulsive gamblers in the family and started talking about

> obsessive compulsive disorder. He said that If someone related to you has

> this kind of problem it comes out as FM in future generations. I need to find

> a new doctor!!!!

> Right now I'm only taking half of an Ultram a day. If I take any more

> than that I get dazed (I'm kind of a small person).

> I think that I have CFS too but no one except my husband takes me

> seriously. I guess that's enough for now. Thanks for reading.

>

>

>

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[Guest guest]

Melinda,

Just wanted to welcome you to the group. They are all very nice here. I

really like the feeling that we all can discuss anything about FM (and more)

and get comforting advice or just a hug. Sending you a hug.

Much Comfort and Peace

Janice

[Guest guest]

Hi everyone,

I'm new here but certainly not to the internet and mailing lists (having

been

online since we all used unix commands).

Hi Melinda:

I'm really sorry you are taking a turn for the worse after so much progress.

I'm glad that you found us though. I like the way you describe the way you

feel.....crap!....that about says it! Hope you stay and enjoy the community

here.

Peggy

[Guest guest]

Melinda,

I am so sorry to gear about your new diagnoses. The first part of

your posting had me saying....You Go Girl, then I got to the part about your

new diagnosis and I thought Oh No!!!!

I don't really know much about your new diagnosis, but I have heard

that shingles are very painful and having that on top of Fibro???

That's it.....I'm keeping my Fibro complaints to myself...it could be a

lot worse.

I'll say a prayer for you and I hope that your days ahead are pain-free

or at least managable.

Fibro Huggs,

Debbie G.

intro

> Hi everyone,

>

> I'm new here but certainly not to the internet and mailing lists (having

been

> online since we all used unix commands).

>

> I'm 41 yrs old and live in the DC metro area. I was diagnosed with Fybro

> about 7 years ago now and was on a number of medications including

flexirol

> <sp?> and elevil. One of the side effects was watching my weight go up and

up

> and up because I could not move.

>

> 2 years ago, I had gastric bypass surgery and lost 180 lbs. I thought this

> would get rid of most of the symptoms and it did. Because estrogen is

stored

> in fat cells, I went from having a migraine every month (for more than 10

> years) to having 2 in the last 2 years.

>

> Cronic bowel problems eased as my diet became more regulated. Because of a

> better diet, I also stabalized my type 2 diabetes. I think this is also

why

> my fybro fog bouts lessened.

>

> Well, after 2 years the honeymoon is over. I feel like crap. I got chicken

> pox for the second time in my life. Ended up with an IV bag and in bed for

2

> weeks. NOw when I thought I was finally getting better, I have something

> called postherpetic neuralgia and shingles that has attached to a nerve in

my

> one finger that sends shooting pains up to my shoulder.

>

> In other words... I am a mess and quite depressed. ACK!

>

> Melinda

>

> <A

HREF= " http://lacenotes.hypermart.net " >http://lacenotes.hypermart.net</A>

> for my handcrafted jewelry.

> <A

HREF= " http://members.aol.com/fiaaffleck " >http://members.aol.com/fiaaffleck

> </A> for our zoo

>

>

> List owner Bierman

>

> Add or view webpage links about Fibromyalgia/CFS.

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

>

>

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>

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>

> TO unsubscribe.

> Go to: http://www.onelist.com/ to this list and unsub from it.

>

>

>

>

>

>

[Guest guest]

April,

Welcome!!! Even though I hate to think that another person has been

struck with Fibro, it's comforting to know that there's somewhere to go

where others understand what you are going through cause they've either been

there themselves or are still there.

As far as SSD for Fibro.....yes...it has been done before many times.

I am currently on SSD for Fibro, although it took me about a year and a half

to finally get approved and they want it reviewed after a year. Apparently

they are hoping that my Fibro goes away....how I wish that were true.

As far as finding a doctor in your area, you can e-mail a lady by the

name of Hageman at bdhageman@... and ask for her help. She is

with a place called ChronicPainHelp and she was the one that provided me

with a list of doctors in my area that have dealt with people with

Fibromyalgia and could help me with pain relief. If she can't help, she

will know someone who can.

Now for your in-laws (or should I say outlaws?). They speak the way

they do to you out of ignorance. It will be up to you to educate them on

the disease, or to just ignore them. If you need help on educating them,

there are loads of people on this list with web addresses they can direct

you to for help.

Once again, welcome to the group. I'm sure you'll meet a lot of

compassionate people here that will do their best to help you if they can or

to answer any questions you may have.

Fibro Huggs,

Debbie G.

Intro

>

> Hi,

> I am a married mom of two children, 14 yo and 8yo. I have just recieved

> the diagnosis of FMS, after 18 months of tests and guesses. I have been

> through painful physical therapy, bottles and bottles of pills, and have

> been told to " go home and get some rest " that I was " just depressed " .

> Yes, I am depressed, who wouldn't be. I am so tired of arrogant

> doctors!!!!! I look at the symptoms of FMS and see me! I have only seen

> the doctor, a chiropractor, that made the diagnosis a few times. It took

> moving from GA to TX to get an answer. I have been unable to work since

> May of 1998, due to the pain and fatigue. Does anyone ever get SSD for

> this? This has financially and emotionally robbed our family. My husband

> has been patient and is mostly supportive, but is also frustrated. He

> wants me to try to go back to work, but I don't feel at this time that I

> can (I am a RN). My kids have also been supportive, but are also

> frustrated and tired of doing without. My husbands family has made many

> snide remarks about my " illness " . I try to ignore. How do you handle the

> pain and fatigue? I sleep, but very lightly due to the pain waking me up.

> I try to walk at least 3 days a week for about 10 minutes, but many days

> this is not possible. I do stretching exercises twice daily. I have to be

> very careful not to over-do it, or I pay for it for days. My medical

> doctor is trying to wean me off of my narcotic pain medication for fear I

> will " get addicted " to it. I only use it when the pain is not tolerable,

> but he is not listening. Does anyone know of a medical doctor in the

> Dallas/Ft. Worth, Texas area that can treat this syndrome properly? I am

> sorry to go on and on, but it is great to vent to someone who

> understands.

>

> April

> ________________________________________________________________

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>

>

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> TIME:Eastern 9 Pm, Central 8 Pm, Mt 7 PM Pacific 6 PM

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>

> To write the list owner: The_List_Owner@...

>

> TO unsubscribe.

> Go to: http://www.onelist.com/ to this list and unsub from it.

>

>

>

>

>

>

[Guest guest]

Hi April:

Welcome! I'm on SSD for Chronic Fatigue Syndrome, Fibromyalgia, Clinical

Depression and Osteoporosis. So it is possible to get benefits for this

illness. It is important to have a doctor who will support your claim, and

also evidence in the form of medical records to prove that you are sick.

They generally will deny the claim a couple of times before they award

benefits and most of the time you need to get an attorney. I think that it

is a good idea to get an attorney who is familiar with fibro and who has

been successful in arguing these cases so ask about that before you get an

attorney. Usually they don't require a stipend, but rather take a

percentage 25% of the back award. The sooner you apply the better because

they will use that date (I think) for the back award.

Good luck in finding a good doctor and thanks for telling us what's going

on.

Peggy

[Guest guest]

Hi, my name is , and i too have been diagnosed with fibromyalgia, and

chronic fatique syndrome, Irritable bowel syndrome and thyroid problems and

high blood pressure, but did'nt know if i stood a chance on drawing anything

from anybody. I don't want to go throught the added stress if it's so

difficult to prove. I live in the state of ALA. and it has not been

recognized in this state as a disease. But i can no longer work ouside the

home, for one i don't have the energy required, plus i would be calling in so

much for the sickness i would get fired anyway. If you could point me in the

right direction as where to start i would appreciate it. Thanks,

-aknaynay@...

[Guest guest]

Thanks peggy it's worth a try. All they can say is no.

[Guest guest]

Hi, my name is , and i too have been diagnosed with fibromyalgia,

and

chronic fatigue syndrome, Irritable bowel syndrome and thyroid problems and

high blood pressure, but didn't know if i stood a chance on drawing anything

from anybody. I don't want to go thought the added stress if it's so

difficult to prove. I live in the state of ALA. and it has not been

recognized in this state as a disease. But i can no longer work outside the

home, for one i don't have the energy required, plus i would be calling in

so

much for the sickness i would get fired anyway. If you could point me in

the

right direction as where to start i would appreciate it. Thanks,

-aknaynay@...

:

It doesn't matter whether or not Alabama recognizes it as a disease because

Social Security DOES! They have written specific guidelines for determining

if it is disabling. Call social security 1- and tell them you

want to apply for disability benefits. Find a doctor who will support you

through the application process with letters and documentation of your

disability. It won't be easy and you will probably have to get a lawyer,

but you are entitled to that benefit if you have worked sufficient credit

hours and if not, they you are qualified for SSDI which is for low income

people. Regular disability is called SSD. Good luck to you!

Peggy

[Guest guest]

Hi ,

I know how you feel. I do not have time for this either. It sucks, huh.

Especially the fatigue. Everyone just thinks I am lazy. I have a lot on my

plate right now also trying to work part time, watch my new grandson full

time, and keep up with my own housework, hobbies, and organizations I help

out with. Man, it is a burden. Hang in there, we are all here for you.

franny

[Guest guest]

Welcome, . We will support you and give us much help as we are able.

Among us all, there is a lot of things we have tried and that have worked and

things that have not worked. We are all here for you and any time you need

to talk someone will be here to listen.

Take care,

Irene

> . I need help.

>

[Guest guest]

,

Welcome to our group. We all have something in common, even if it bad we all

can understand what eachother is going through.

Take care.

Sending Comfort and Peace

Janice

" I wish we could change our dials to AM instead of FM!!! "

[Guest guest]

,

Welcome to our group. We all have something in common, even if it bad we all

can understand what eachother is going through.

Take care.

Sending Comfort and Peace

Janice

" I wish we could change our dials to AM instead of FM!!! "

[Guest guest]

Welcome ,

Glad you came here, there is support here. It is a horrible disease that we

all share but you are not alone.

Take care.

Sending Comfort and Peace

Janice

" I wish we could change our dials to AM instead of FM!!! "

[Guest guest]

> Welcome, . We will support you and give us much help as we

are able.

> Among us all, there is a lot of things we have tried and that have

worked and

> things that have not worked. We are all here for you and any time

you need

> to talk someone will be here to listen.

>

> Take care,

> Irene

>

> > . I need help.

> >

> Thank-you, it helps to know there are others and they understand.

We just moved and it took alot out me, I don't know where

things are or where they go when I do find them. I'm also new to the

cyber age, we got a computer about 5 months ago. I've never done

anything like this before. I never went to a support group either.

I just sometimes feel so weird. Thanks again:) nancy

>

>

>

>

[Guest guest]

Welcome !

I'm glad that you're with us.....even though its not necessarily your first

choice of places to be! I can understand that! What is PVC? I've been on

Zoloft for about 8 years now....depression (situational due to the illness).

You have a beautiful name....glad you're here.

Peggy

[Guest guest]

This is a good support group. Each and every one is there to help all of the

ones that need help. Just ask and you will receive. What do you mean that

you feel weird?

Take care,

Irene

> I never went to a support group either.

> I just sometimes feel so weird. Thanks again:) nancy

>

[Guest guest]

Welcome Laurel,

You will find this to be a very helpful and supportive list. It's good to

have you join us!

About your ears, do you have jaw pain as well? I ask because I have TMJ and

sometimes, when the pain moves, it feels like it's in my ears. I just had

my PA check my ears yesterday during a follow-up...all clear, bur still

hurts.

Peace,

[Guest guest]

sarah, no jaw pain. the doctor x-rayed my mastoids (hope), but i saw the x-rays

and they were clear as a bell. laurel

[Guest guest]

<But I still am

concerned so I can't

> totally ignore everything. What if it's a serious condition? I have

decided I'm

> going to ask my Dr. to check out my back. It feels like there's a

knife right in

> the middle of my back. So maybe it is FM, but maybe not. And if it

were some sort

> of problem that could be fixed it would be a Godsend to have that

much less pain.

I too have back pain, right in the middle of my back. Every time I

mentioned it to my Dr. he just kind of ignored it. But it had really

gotten to be really debilitating--I had given up even trying to walk

for exercise, because it would really start to hurt then. Plus I was

beginning to feel like my whole body was just " bunched up " around the

middle. I'm a singer and I was starting to notice I had less and less

breath control and less and less stamina for performing. So I went to

see a chiropractor about 4-6 weeks ago. He has been adjusting my back

and having me get physical therapy. It has helped. If nothing else I

feel like I'm standing straighter. Right now the back pain is bad,

but I just finished an evening sitting in an uncomfortable chair for

sports awards night and then had to sit on the bleachers for another

1/2 hour or so.

I really hate it when members of the medical community just figure

that if you have no measurable symptoms and all your tests are normal

that there is nothing wrong with you (except your head!).

Sue

[Guest guest]

Also, I have been reading about guaifasen (something like that). The people

on

the guai lists are convinced it works, but of course they would leave this

list

if they decided not. I am sure it works actually for some (or a lot of)

people. I

just would like to hear something of the other point of view, if anyone has

thoughts or experiences would you please share them?

Thanks,

Laurel

Can someone fill me in on this?? What's it suppose to do?

Thanks

Darcy