Re: Im new to this

[Guest guest]

Hi Dina,

You are not alone with this disease. there are a number of us at various

states of dealing with the disease. What medications are you currently

taking and for what? That will help us a lot to know what information we

can find to help you. This is the greatest bunch for pulling up information

for someone. You ask a question, and will get lots of answers by a group of

very caring individuals.

in MN

[Guest guest]

Welcome, Dina!

I'm very sorry that you are feeling worried and isolated. You can

come here anytime you want to talk.

Do you have a rheumatologist? I hope so. What medications are you

taking? Does your physician know that you are in constant pain,

despite the drugs?

> Hi,

> My name is Dina and i am a Sacramento State University student.

Last

> October i was diagnosed with a server case of chronic rhuematoid

> arthritis. i was told that i have had it since i was seventeen

years

> old and had no idea. i am now eighteen years old and will be

nineteen

> on April,9th. i take nine medications a day and fifteen on sundays.

> and i am still constantly in pain. i have this disease in tons of

my

> joints, and my life has changed dramatically within the last couple

> of months because of it. i guess i am really just looking for some

> support, i feel alone and scared. please help out with just a

little

> hello.

[Guest guest]

Hi Dina,

I am sorry to hear that you are scared. It's great that you have

found this group. They are the most compassionate, supportive, and

fun group you will ever fine.

Welcome!

Al

> Hi,

> My name is Dina and i am a Sacramento State University student.

Last

> October i was diagnosed with a server case of chronic rhuematoid

> arthritis. i was told that i have had it since i was seventeen

years

> old and had no idea. i am now eighteen years old and will be

nineteen

> on April,9th. i take nine medications a day and fifteen on sundays.

> and i am still constantly in pain. i have this disease in tons of

my

> joints, and my life has changed dramatically within the last couple

> of months because of it. i guess i am really just looking for some

> support, i feel alone and scared. please help out with just a

little

> hello.

[Guest guest]

Sharon, I love my anti-TNF Enbrel! It does a wonderful job of

controlling my pain and inflammation. I don't have to work, since I'm

already retired, but am able to do all of the normal things that an old

lady needs to do, LOL.

Yes, there is hope. Just hang in there, and go ahead and try an

anti-TNF med if offered to you.

Sue

On Thursday, August 14, 2008, at 03:58 PM, rupertsmum wrote:

>

> what i want to ask the group is truly does it get better or do we just

> learn to cope? is anyone else around my age? or trying to juggle a job

> and family, while suddenly feeling very old?

>

[Guest guest]

Sharon,

Yes there are members here your age. I wish that I could be more

support to you mother's with small children. Mine are grown now and

I don " t have that responsibility to add to my days.

Sweetie, you need support. You are not alone with your feelings

about TNF blockers. It is a major step but many people here have

been helped by them. If medications are not working then we try

another knowing there will be something to help. I encourage you to

post your questions and fears. Let others share their experiences and

knowledge about RA and treatments.

Everyone here is on your side. Anytime you need support or just to

let out frustrations, please feel free to let us know. Please know

that I care when you are having bad days.

Welcome to our little abode.

Shirley

--- In , " rupertsmum " <rupertsmum@...>

wrote:

>

> Hi

>

> I just wanted to take some time to say hi to the group, My name is

> sharon im 32, i live in the UK and i have RA. Ive been diagnosed

for

> 2 years and things are no further forward for me. Mainly im

> frustrated, im frustrated at the restrictions which i suddenly feel

> have been placed on my life, im frustrated that i keep being told

it

> will get better once the medication kicks in!! None of that helps

> when im a single parent to a 7 year old with lots of energy and

very

> little sympathy!! none of it helps when ive just returned to work

> after 12 weeks absent on sick leave and im seriously petrified

that i

> just cant cope and may end up unable to work.

>

> up until recently my hands were the worst affected, i also have

> problems with my hips, feet and shoulders and the most recent and

> perhaps worst affected are has been my neck which went into spasm,

> which is painful and depressing.

>

> I take both methotrexate( for 8 months now) and sulfasalazine(2

years,

> as well as anti inflammatorys, pain killers, and a mild anti

> depressant to help me sleep)and have yet to feel any significant

> effect and the methotrexate is now at a high dosage causing stomach

> upset, the next thing to be considered is anti TNF, not something

im

> looking forward to!!

>

> what i want to ask the group is truly does it get better or do we

just

> learn to cope? is anyone else around my age? or trying to juggle a

job

> and family, while suddenly feeling very old? my father also has RA

> from around the same age as i am now and i can remember seeing him

in

> pain but he agrees it was never this aggressive for him, while my

poor

> mother is seriously struggling to watch me on the days my hands are

> too stiff to lift my cutlery.

>

> from this group i just want to gain a bit of support, i want to

know

> its ok to have days when this gets me down but i also want to be

sure

> there is in fact light at the end of this tunnel!!

>

> regards

>

> Sharon xx

>

[Guest guest]

Shirley, you are a support, silly!

Sharon, there are many of us in our 20s and 30s. I was first symptomatic at 28

in 1998 and officially diagnosed in 2006. My first drugs were steriods and

NSAIDs, of course, but within a few months, the rheumatologist started me on

Enbrel which was a godsend. I felt it working within a week. I went from

having to use a disabled parking placard, to being just regular me. I have a

4.5 yr old, a 7 week old, and I work full time, well, I will once I go back to

work from maternity leave on 8/25. I'm having some moderate symptoms now b/c of

post partum flaring, but it is NOTHING compared to life before Enbrel. If your

doctor is game, give the biologics a try. Yes, there are risks and side

effects, but there are also benefits such as having your life back.

Welcome!

[ ] Re: Im new to this

Sharon,

Yes there are members here your age. I wish that I could be more

support to you mother's with small children. Mine are grown now and

I don " t have that responsibility to add to my days.

Sweetie, you need support. You are not alone with your feelings

about TNF blockers. It is a major step but many people here have

been helped by them. If medications are not working then we try

another knowing there will be something to help. I encourage you to

post your questions and fears. Let others share their experiences and

knowledge about RA and treatments.

Everyone here is on your side. Anytime you need support or just to

let out frustrations, please feel free to let us know. Please know

that I care when you are having bad days.

Welcome to our little abode.

Shirley

--- In @gro ups.com, " rupertsmum " <rupertsmum@ ...>

wrote:

>

> Hi

>

> I just wanted to take some time to say hi to the group, My name is

> sharon im 32, i live in the UK and i have RA. Ive been diagnosed

for

> 2 years and things are no further forward for me. Mainly im

> frustrated, im frustrated at the restrictions which i suddenly feel

> have been placed on my life, im frustrated that i keep being told

it

> will get better once the medication kicks in!! None of that helps

> when im a single parent to a 7 year old with lots of energy and

very

> little sympathy!! none of it helps when ive just returned to work

> after 12 weeks absent on sick leave and im seriously petrified

that i

> just cant cope and may end up unable to work.

>

> up until recently my hands were the worst affected, i also have

> problems with my hips, feet and shoulders and the most recent and

> perhaps worst affected are has been my neck which went into spasm,

> which is painful and depressing.

>

> I take both methotrexate( for 8 months now) and sulfasalazine( 2

years,

> as well as anti inflammatorys, pain killers, and a mild anti

> depressant to help me sleep)and have yet to feel any significant

> effect and the methotrexate is now at a high dosage causing stomach

> upset, the next thing to be considered is anti TNF, not something

im

> looking forward to!!

>

> what i want to ask the group is truly does it get better or do we

just

> learn to cope? is anyone else around my age? or trying to juggle a

job

> and family, while suddenly feeling very old? my father also has RA

> from around the same age as i am now and i can remember seeing him

in

> pain but he agrees it was never this aggressive for him, while my

poor

> mother is seriously struggling to watch me on the days my hands are

> too stiff to lift my cutlery.

>

> from this group i just want to gain a bit of support, i want to

know

> its ok to have days when this gets me down but i also want to be

sure

> there is in fact light at the end of this tunnel!!

>

> regards

>

> Sharon xx

>

[Guest guest]

Hi Sharon and Group,

I know exactly how you feel. I started with pain in my hands and

wrists so naturally they thought it was carpal tunnel. it was 8 long

months before they branched out to something else. i had to make a lot

of scary decisions in a short time but it was all worth it to try and

get out of pain. so far all of the meds i was put on didnt give me any

relief but my rh told me everyone responds differently. sometimes i

get overwhelmed but hearing everyones stories help. i cant work

because of all the pain. i can barely drive or walk anywhere. i have

faith in the medication and worry about the side effects later. my

main goal and the only thing that keeps me going is knowing one day i

will be back to life.

Please hang in there and just know your not alone and you are all in my

prayers.

[Guest guest]

Hi Sharon

I am 31 and mom to a very active 3 year old and have a very supportive

husband. I was on metho for about 3mo without enough success and just

start and the anti tnf enbrel. Wow what a difference. I was scared of

it but decided to see if it would work for me. It worked so well I

don't even think about the risks if something happens I'll deal with

it. I work full time as a RN, and was fearful of losing my career, but

now I'm back to working circles around my co-workers. I hope you find

something that works for you.

Diane

>

[Guest guest]

Sharon, welcome to the group. I'm sorry you had to join us, but I hope

you'll be glad you did. You can learn a lot here from others who understand

where you're at.

Although your life may never be the same as it was, it can still be very

fulfilling and hopefully, less painful. Yes...it IS OK to have days when

you are down. That's life for most people and for those of us suffering

from RA, sometimes it really sucks. No doubt about it. Feel free to come

here to vent, to cry, and to lean on us.

I am not on methotrexate, but many here are so they can tell you their

experiences there. I'm on Sulfazine for only a few months and I'm not too

sure about it just yet.

Sit back and read and jump in when you see fit..I hope that we can somehow

make a difference for you.

Dorothy

_____

From: [mailto: ] On

Behalf Of rupertsmum

Sent: Thursday, August 14, 2008 3:59 PM

Subject: [ ] Im new to this

Hi

I just wanted to take some time to say hi to the group, My name is

sharon im 32, i live in the UK and i have RA. Ive been diagnosed for

2 years and things are no further forward for me. Mainly im

frustrated, im frustrated at the restrictions which i suddenly feel

have been placed on my life, im frustrated that i keep being told it

will get better once the medication kicks in!! None of that helps

when im a single parent to a 7 year old with lots of energy and very

little sympathy!! none of it helps when ive just returned to work

after 12 weeks absent on sick leave and im seriously petrified that i

just cant cope and may end up unable to work.

up until recently my hands were the worst affected, i also have

problems with my hips, feet and shoulders and the most recent and

perhaps worst affected are has been my neck which went into spasm,

which is painful and depressing.

I take both methotrexate( for 8 months now) and sulfasalazine(2 years,

as well as anti inflammatorys, pain killers, and a mild anti

depressant to help me sleep)and have yet to feel any significant

effect and the methotrexate is now at a high dosage causing stomach

upset, the next thing to be considered is anti TNF, not something im

looking forward to!!

what i want to ask the group is truly does it get better or do we just

learn to cope? is anyone else around my age? or trying to juggle a job

and family, while suddenly feeling very old? my father also has RA

from around the same age as i am now and i can remember seeing him in

pain but he agrees it was never this aggressive for him, while my poor

mother is seriously struggling to watch me on the days my hands are

too stiff to lift my cutlery.

from this group i just want to gain a bit of support, i want to know

its ok to have days when this gets me down but i also want to be sure

there is in fact light at the end of this tunnel!!

regards

Sharon xx

_,_._,___

[Guest guest]

Sharon and Group;

Welcome to the group Sharon. Yes, there is light at the end of this

tunnel. I joined this group and learned of so many different

biologicc we can take. In a month I went into my rheumys and told

her about my horrid pain. She seemed a little surprised. Since I

come in her office every visit just peachey perfect haaaaaa. Maybe I

didnt explain my pain in body language.

I remember one post a guy wrote or I think it was a guy. " What the

hell I got to do to show the doctor I am in pain, Come in the office

in a damn wheel chair. " yes thats what he said. Excuse my language

I don't believe in cussiing. The only way I could explain what he

said is to repeat his/hers exact words haaaaaaaaaa. No I didnt use

my wheel chair. But I layed it on thick. No pretending either. I

can't say exactly what moved my rheumy.

I just read everyones post and tried to let my rheumy know I am in

unbearable pain. I think we have to go through a period of trying

certain meds for our insurance companies. I been trying diff meds

for over a year and I became unable to do anything except go to the

bathroom. I stayed in bed it utter pain.

I was in shock that so many people had meds that helped them. My

rheumy said before I can do anything else you got to get your eye

doctor to give me your eye test. Well that was my fault I had left

up to the receptionist to send everything. I made special trips to

my eye doctor to get his fax number and phone number so my rheumy

can get that info.

I also had to clear up an infection I had cause my blood test

revealed an infection. OMG, I went to my primary doctor took the

papers my rheumy gave me of my blood test indicating an infection.

Lol that had to clear up first before anything else could be done. I

can't start humira injections till I did all this. Awe, What is

humira injections you say.

Better start a new paragraph. My group here gave me the knowlege of

the light in the end of the tunnel. I had to explain to you why the

rheumy took so long to get me what I needed for this pain. I tried

everthing reguired. Methotrexiate I was allergic too. I been taking

plaqunil and sulvazaline for more than 7 months. I got worse pain

than when I went to my rheumy. I begin to think there was nothing

left to help me in this agony. Than I read all the post here and saw

how so much was out there to help us. I have been seeing a rheumy

for about 18 months all together.

New paragraph, haaaaaa. I guess I let my rheumy have it to put it

bluntly she needed to know I was helplesly in pain and agony too. I

didnt know how bad I hurt either till I read the post here. I ever

so gently kept my rheumy informed of my pain. And she is really

trying to help now. The guys are great here and they are so

understanding with me. I love them everyone. Sorry my post is so

long but I needed to explain why my rheumy took an extra month or so

to really help me. You can't go in there with ok I hurt lol. They

use our body language to hint hint.

I kept telling my group. The ones here. I gave the rheumy

everything she wanted. I felt like I was Dorthy in the Wizard of

Oz. I finally got the witches broom now the Wizard can help me

haaaaaaaaaaaaaa. I counted off the days to my next visit. I told

the group finally its tomorrow. That was 3 weeks ago. She put me on

prednisone. In 1 day I could clean house, take a bath, and feel

hardly any pain. I can only take prednisone a month cause My rheumy

don't like me taking it with my other illnesses. I start the humira

injections in 2 weeks I am so excited. Good luck sweety I hope this

long long post helps. You will read a lot more. Use good judgement

and get some better help.

Gently kind hugs

Clora

>

> Hi

>

> I just wanted to take some time to say hi to the group, My name is

> sharon im 32, i live in the UK and i have RA. Ive been diagnosed

for

> 2 years and things are no further forward for me. Mainly im

> frustrated, im frustrated at the restrictions which i suddenly feel

> have been placed on my life, im frustrated that i keep being told

it

> will get better once the medication kicks in!! None of that helps

> when im a single parent to a 7 year old with lots of energy and

very

> little sympathy!! none of it helps when ive just returned to work

> after 12 weeks absent on sick leave and im seriously petrified

that i

> just cant cope and may end up unable to work.

>

> up until recently my hands were the worst affected, i also have

> problems with my hips, feet and shoulders and the most recent and

> perhaps worst affected are has been my neck which went into spasm,

> which is painful and depressing.

>

> I take both methotrexate( for 8 months now) and sulfasalazine(2

years,

> as well as anti inflammatorys, pain killers, and a mild anti

> depressant to help me sleep)and have yet to feel any significant

> effect and the methotrexate is now at a high dosage causing stomach

> upset, the next thing to be considered is anti TNF, not something

im

> looking forward to!!

>

> what i want to ask the group is truly does it get better or do we

just

> learn to cope? is anyone else around my age? or trying to juggle a

job

> and family, while suddenly feeling very old? my father also has RA

> from around the same age as i am now and i can remember seeing him

in

> pain but he agrees it was never this aggressive for him, while my

poor

> mother is seriously struggling to watch me on the days my hands are

> too stiff to lift my cutlery.

>

> from this group i just want to gain a bit of support, i want to

know

> its ok to have days when this gets me down but i also want to be

sure

> there is in fact light at the end of this tunnel!!

>

> regards

>

> Sharon xx

>