Re: Don't know what to do here.

[Guest guest]

Hi, I just want to say that I'm so sorry that your going through all

this pain, and then dealing with it. I know it's hard, and we

all have been there, and some are still there. Some don't know, or

understand what your going through, some just try to ignore it, or

joking sometimes helps people to deal with stressful situations.

I hope that things get better for you, sometimes we don't won't to do

things, but not much choice. I don't won't to take the Prednisone

either, but I am right now, I just can't live through this pain much

longer. If you need a cane, don't be embarrassed, if it helps do

it. I use to feel that way also, but not anymore, I don't really

care what people think, remember your the most important. Some

people are so rude and obnoxious, and they wouldn't know anything if

they got bit on the butt.

If your not happy with your doctor's there are others. I have never

taken Bextra, but many do here, so you will here from them. You take

care, and I will keep you in my prayers, tawny

> I was diagnosed first with Fibromyalgia 5 years ago. Last year

after

> a bone scan and some blood work the Rheumy diagnosed me

Seronegative

> (he left out saying Rheumatoid Arthritis). He doesn't tell me

> anything really. I just lost 75lb. He wanted to put me on

> Prednisone and after the nightmarish stories I've heard I really

> can't afford to gain weight again and have food cravings. I have

> problems with sugar and food in general. My knees can't bear to

gain

> that weight again either. I also am taking Topamax which threatens

> vision and I have lost central vision in my right eye as it is due

to

> another degenertive disease I have PXE. I'm at the point were I

> would love to have a cane but am too embarrassed...I'm 34 years

old.

> It would probably also put pressure on my shoulders anyway.

Physical

> therapy and Celebrex take the edge off but are not really helping.

I

> just got my review in the mail for my disability which I got based

> more on depression. My psychiatrist thinks I'm doing just swell

> because I'm not fat anymore he's a little nuts. I don't know if he

> will fill out the forms for me properly this time around. On my

> disability forms they mentioned that my problems were exacerbated

by

> my Fibromyalgia and partial vision loss. If they take this

> disability away from me I

> will end up on welfare basically. I am in a lot of pain and have

not

> figured out a way to stop it. I fear I will end up in a wheelchair

> soon and sleep 24 hours a day until I die ...hopefully soon. I

don't

> know if my Orthopedist or Rheumotologist will fill out disbility

> forms me either. I am young and attractive and this unfortunately

> seems to be working against me right now. These people really

don't

> seem to beleive me. My freinds joke that one day the video cameras

> are going to catch me and put me on the news. My shrink isn't of

> much support either. I feel very alone and at this point today

> terrified. Does anyone know if RA is a strong enough case in a

> disability review? I am terrified and exhausted and in

unbeleivable

> pain every minute of every single day. The pain is invading every

> single one of my joints. My Orhtopedist gave me Bextra today.

Does

> anyone know what that is? Scared of the future and

> hating today. Any feedback would be appreciated thank you.

[Guest guest]

You sure aren't alone, I feel so many of the same things you do. No

one but another of us can understand what the pain is, or how it

debilitates us. I am so sick of getting dirty looks because I use

the handicapped restroom stalls... if you aren't in a wheelchair,

you can't be handicapped in this world. Or less abled. Or whatever

the current pc term is now.

I was dx-ed with RA in my first year of marriage, when I was 34,

just your age. It was really bad that first year, very aggressive,

and for whatever reason, really affecting my feet, knees and hips so

I couldn't walk very long. Then it went into a kind of remission for

many, many years until right before this past Xmas when it flared,

the worst it's ever been. I can hardly use my right hand now.

Sometimes when I wake up, I have to uncurl my right hand with my

left. I am soon to 'celebrate' my 50th birthday, and I wonder how

long it will be before I make those ppl happier by being in a

wheelchair.

Please don't give up hope, tho I know it's hard, and I am hardly in

a frame of mind, myself, to offer much comfort. Just know you're not

alone.

** cheryl **

--- In , " sandit328 " <SandiT328@a...>

wrote:

> I fear I will end up in a wheelchair

> I am terrified and exhausted and in unbeleivable

> pain every minute of every single day. The pain is invading every

> single one of my joints.

[Guest guest]

I'm very sorry that you are having such a difficult time and that there

are so many people around you who aren't taking your problems seriously.

Sounds like it's time for a new rheumatologist, psychiatrist, and group

of friends.

There are many better alternatives to long-term prednisone for RA. You

are right in not wanting to start it after losing all that weight. I'm

not sure what your rheumatologist could be thinking.

Arthritis Research Campaign

" Treatment of Rheumatoid Arthritis " :

http://www.arc.org.uk/about_arth/med_reports/series4/tr/6610/6610.htm

Bextra is the same type of drug that Celebrex is a COX-2 specific

nonsteroidal antiinflammatory (NSAID). You probably shouldn't be taking

both together. Is the Bextra replacing the Celebrex?

Information on Bextra (valdecoxib) at RxList.com:

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

None of these healthcare professionals is successfully treating your

pain either. That is another indication that you need a new team. There

are many treatment strategies for pain. You deserve to have a group of

physicians who will work hard to reduce the amount of pain you are

experiencing.

Yes, RA alone is often enough to qualify for disability. Perhaps getting

a lawyer would help?

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] Don't know what to do here.

> I was diagnosed first with Fibromyalgia 5 years ago. Last year after

> a bone scan and some blood work the Rheumy diagnosed me Seronegative

> (he left out saying Rheumatoid Arthritis). He doesn't tell me

> anything really. I just lost 75lb. He wanted to put me on

> Prednisone and after the nightmarish stories I've heard I really

> can't afford to gain weight again and have food cravings. I have

> problems with sugar and food in general. My knees can't bear to gain

> that weight again either. I also am taking Topamax which threatens

> vision and I have lost central vision in my right eye as it is due to

> another degenertive disease I have PXE. I'm at the point were I

> would love to have a cane but am too embarrassed...I'm 34 years old.

> It would probably also put pressure on my shoulders anyway. Physical

> therapy and Celebrex take the edge off but are not really helping. I

> just got my review in the mail for my disability which I got based

> more on depression. My psychiatrist thinks I'm doing just swell

> because I'm not fat anymore he's a little nuts. I don't know if he

> will fill out the forms for me properly this time around. On my

> disability forms they mentioned that my problems were exacerbated by

> my Fibromyalgia and partial vision loss. If they take this

> disability away from me I

> will end up on welfare basically. I am in a lot of pain and have not

> figured out a way to stop it. I fear I will end up in a wheelchair

> soon and sleep 24 hours a day until I die ...hopefully soon. I don't

> know if my Orthopedist or Rheumotologist will fill out disbility

> forms me either. I am young and attractive and this unfortunately

> seems to be working against me right now. These people really don't

> seem to beleive me. My freinds joke that one day the video cameras

> are going to catch me and put me on the news. My shrink isn't of

> much support either. I feel very alone and at this point today

> terrified. Does anyone know if RA is a strong enough case in a

> disability review? I am terrified and exhausted and in unbeleivable

> pain every minute of every single day. The pain is invading every

> single one of my joints. My Orhtopedist gave me Bextra today. Does

> anyone know what that is? Scared of the future and

> hating today. Any feedback would be appreciated thank you.

[Guest guest]

Hi ,

It was great to get your email today. It's going to rain and I am

canceling plans with friends. I knew from last night I wasn't

feeling good. She is acting a bit cold with me on account of that.

She said, " I understand you don't want to drive around in the rain " .

And I said, " it has nothing to do with driving around in the rain...I

don't feel good when it rains. " I have said this a million times

before. She just doesn't want to get it. I am sick of having to say

things a million times for people to get it.

I have been going to my therapist for 1 year and three months telling

her about my pain and the other day she said, " I know that some days

you have it and some days you don't " and I'm thinking am I on Mars?

Who have I been talking to about this for the past year? I am in

pain every second of every day and unbelievably fatigued. She also

apparently seems to feel I have a choice in whether I can work or not.

My psychiatrist is another story all together. I tell him I have

arthritis he says it's because I don't " move " . As if he knows what I

do with my life when I am home. He is the one that got me the

disability based on depression. My father said he did it as a favor

to him (they knew eacother). I am no longer on speaking terms with

my father and the psychiatrist thinks I'm doing wonderful with my

weight loss and asks me when I am going to get a lover and a job,

every time I go to his office. I got the Review papers so I need him

right now. I don't know. Everything seems to be falling apart.

And I don't know why the Orthopedist and Rheumotologist would suggest

Prednisone either! I stopped going to the Rheumy once he prescribed

that for me. I knew even then (knowing nothing) that it was off. I

don't know where to go to find a good doctor. Every where I turn

they are all terrible. I live in NYC. I mean? It could be my

insurance I don't know. I have HIP. I have been to so many doctors

already and the ALL suck! And now the threat of having even these

sucky doctors taken away from me with the possible threat of losing

my disability and having no money. It's all coming crashing down on

me.

Yes, the Bextra is replacing the Celebrex.

The Orthopedist was more concerned asking me " if I am eating? " about

5 times. I'm 130lb 5'3. I eat. I was 205lb this was a wonderful

accomplishment for me. When I was down to 160 she said I don't have

to loose anymore (she is about 160lb). How a doctor would tell me I

don't have to loose anymore weight when you are 160lb and have

horrific joint problems I don't know.

I know I am rambling here and I sound very angry...sorry for that. I

am very scared right now for my health, my disability insurance, my

future, my present...everything. Emotionally I feel like I am alone.

My regular therapist seems to not really understand me either lately

my pain with the RA. She doesn't get it. She really doesn't get

it. So what am I going there for either?

I am so exhausted. Having to get referrals, go here, go there, call

here, call there, it's all so exhausting. I have to be an Olympic

athlete to take care of this.

I had a lawyer help the first time around with the disability ...

this is a Review I don't know I guess I should call them?

Oh good God I am really going on here...sorry.

Thank you for reaching out. It meant a lot to me to talk to someone

who knows what they are talking about and doesn't talk about of their

arse! Pardon my french!

Sandi

> I'm very sorry that you are having such a difficult time and that

there

> are so many people around you who aren't taking your problems

seriously.

>

> Sounds like it's time for a new rheumatologist, psychiatrist, and

group

> of friends.

>

> There are many better alternatives to long-term prednisone for RA.

You

> are right in not wanting to start it after losing all that weight.

I'm

> not sure what your rheumatologist could be thinking.

>

>

> Arthritis Research Campaign

> " Treatment of Rheumatoid Arthritis " :

>

http://www.arc.org.uk/about_arth/med_reports/series4/tr/6610/6610.htm

>

>

> Bextra is the same type of drug that Celebrex is a COX-2 specific

> nonsteroidal antiinflammatory (NSAID). You probably shouldn't be

taking

> both together. Is the Bextra replacing the Celebrex?

>

>

> Information on Bextra (valdecoxib) at RxList.com:

> http://www.rxlist.com/cgi/generic/bextra.htm

>

>

> None of these healthcare professionals is successfully treating your

> pain either. That is another indication that you need a new team.

There

> are many treatment strategies for pain. You deserve to have a group

of

> physicians who will work hard to reduce the amount of pain you are

> experiencing.

>

> Yes, RA alone is often enough to qualify for disability. Perhaps

getting

> a lawyer would help?

>

>

>

>

> I'll tell you where to go!

>

> Mayo Clinic in Rochester

> http://www.mayoclinic.org/rochester

>

> s Hopkins Medicine

> http://www.hopkinsmedicine.org

>

>

> [ ] Don't know what to do here.

>

>

> > I was diagnosed first with Fibromyalgia 5 years ago. Last year

after

> > a bone scan and some blood work the Rheumy diagnosed me

Seronegative

> > (he left out saying Rheumatoid Arthritis). He doesn't tell me

> > anything really. I just lost 75lb. He wanted to put me on

> > Prednisone and after the nightmarish stories I've heard I really

> > can't afford to gain weight again and have food cravings. I have

> > problems with sugar and food in general. My knees can't bear to

gain

> > that weight again either. I also am taking Topamax which

threatens

> > vision and I have lost central vision in my right eye as it is

due to

> > another degenertive disease I have PXE. I'm at the point were I

> > would love to have a cane but am too embarrassed...I'm 34 years

old.

> > It would probably also put pressure on my shoulders anyway.

Physical

> > therapy and Celebrex take the edge off but are not really

helping. I

> > just got my review in the mail for my disability which I got based

> > more on depression. My psychiatrist thinks I'm doing just swell

> > because I'm not fat anymore he's a little nuts. I don't know if

he

> > will fill out the forms for me properly this time around. On my

> > disability forms they mentioned that my problems were exacerbated

by

> > my Fibromyalgia and partial vision loss. If they take this

> > disability away from me I

> > will end up on welfare basically. I am in a lot of pain and have

not

> > figured out a way to stop it. I fear I will end up in a

wheelchair

> > soon and sleep 24 hours a day until I die ...hopefully soon. I

don't

> > know if my Orthopedist or Rheumotologist will fill out disbility

> > forms me either. I am young and attractive and this unfortunately

> > seems to be working against me right now. These people really

don't

> > seem to beleive me. My freinds joke that one day the video

cameras

> > are going to catch me and put me on the news. My shrink isn't of

> > much support either. I feel very alone and at this point today

> > terrified. Does anyone know if RA is a strong enough case in a

> > disability review? I am terrified and exhausted and in

unbeleivable

> > pain every minute of every single day. The pain is invading every

> > single one of my joints. My Orhtopedist gave me Bextra today.

Does

> > anyone know what that is? Scared of the future and

> > hating today. Any feedback would be appreciated thank you.

[Guest guest]

Hi Cheryl,

Thanks for your words in relating. It's just so good to talk to

people who understand because they live it. It really is very

isolating and I am becoming very angry at people around me. Just

becuase I am not " yet " in a wheel chair everyone is making me feel

like I am feinging this whole thing. I really just want to be away

from everyone. I am getting sick of people to be honest with you. I

don't complain about my pain 24 hours a day so they don't get it but

when I do complain they kind of just let it go over thier heads and I

don't really feel heard. My shrink listens to me but she seems to

think it couldn't possibly be that bad and that I probably have a

choice if I can work or not because I don't limp. I don't see how

she doesn't see that I don't limp!!!!!! Frustration...and isolation

are my feelings today.

Sandi

> > I fear I will end up in a wheelchair

> > I am terrified and exhausted and in unbeleivable

> > pain every minute of every single day. The pain is invading

every

> > single one of my joints.