sick and tired of being sick and tired

[Guest guest]

Dear Babs,

I hear ya sweetie and I agree, I have a t-shirt that says "Sick and Tired of Being Sick and Tired" Want one? Go to cafepress.com and I am not sure what all diseases it's under, but I found it under cystic fibrosis. (my daughter has cf and I was looking for cf shirts) but that one applies to ME~ You can always vent here we understand completely! btw I have fibromyalgia and the sinus infection from hell among other things.

love,

[Guest guest]

Hello all,

Its been a while since I've had the time to check in on this site...

Dealing with what is now diagnosed as " undifferentiated Connective

Tissue Disease " .... (before that it was Psoriatic arthritis or RA...)

I have been to numerous Rhuematologists and have even been to see a so

called expert in Baltimore land at the Good Samaritan Hospital...

What a trip I've been on...

Last month was my year anniversary for dealing with this illness, and

I am disheartened that I'm really not much further in recovery as

medications are still changing and new symptoms continue to appear

with out warning.

I find that there are at least three (normally 4) days a week that I'm

in agony from joint pain or just tired beyond belief... I'm

struggling to stay positive and I'm afraid I'm loosing the battle...

The most recent Doctors appointment (I go every six weeks) they put me

on metheltraxate along with the planquinile and 16 milagrams of

steroids... They said if it didn't work, then embrel injections would

be considered at the next visit.. This worries me to no end as I'm

already a pin cushion for blood tests, and I desperately hate needles...

I guess I'm complaining.... But what I think I want to know is how

you all deal with this? I feel so weak and hopeless its just ripping

me apart... and stress seems to only magnify the symptoms to the

point that I have days were I can hardly walk...

Is anyone else on this site diagnosed as Undifferentiated Connective

Tissue Disease? I'd love to hear from anyone who has any type of

advise, but I'm curious as to others who have the same Dx and their

progress..

Thank You

Bonnie

[Guest guest]

Thanks ...

Oddly enough, it helps to know I'm not alone... I am 32 and just

finished college a year ago while working full time and raising a

family... I have a daughter who is 11 and a husband that thinks he's

15.... ugh! Needless to say, I want and need answers but I'm afraid

I wont be seeing them any time soon...

Thanks again for the reply

>

> > Hello all,

> > Its been a while since I've had the time to check in

> > on this site...

> > Dealing with what is now diagnosed as

> > " undifferentiated Connective

> > Tissue Disease " .... (before that it was Psoriatic

> > arthritis or RA...)

> > I have been to numerous Rhuematologists and have

> > even been to see a so

> > called expert in Baltimore land at the Good

> > Samaritan Hospital...

> > What a trip I've been on...

> > Last month was my year anniversary for dealing with

> > this illness, and

> > I am disheartened that I'm really not much further

> > in recovery as

> > medications are still changing and new symptoms

> > continue to appear

> > with out warning.

> > I find that there are at least three (normally 4)

> > days a week that I'm

> > in agony from joint pain or just tired beyond

> > belief... I'm

> > struggling to stay positive and I'm afraid I'm

> > loosing the battle...

> > The most recent Doctors appointment (I go every six

> > weeks) they put me

> > on metheltraxate along with the planquinile and 16

> > milagrams of

> > steroids... They said if it didn't work, then

> > embrel injections would

> > be considered at the next visit.. This worries me

> > to no end as I'm

> > already a pin cushion for blood tests, and I

> > desperately hate needles...

> >

> > I guess I'm complaining.... But what I think I want

> > to know is how

> > you all deal with this? I feel so weak and hopeless

> > its just ripping

> > me apart... and stress seems to only magnify the

> > symptoms to the

> > point that I have days were I can hardly walk...

> >

> > Is anyone else on this site diagnosed as

> > Undifferentiated Connective

> > Tissue Disease? I'd love to hear from anyone who

> > has any type of

> > advise, but I'm curious as to others who have the

> > same Dx and their

> > progress..

> > Thank You

> > Bonnie

> >

> >

>

>

>

>

________________________________________________________________________________\

____

> Never miss a thing. Make your home page.

> http://www./r/hs

>

[Guest guest]

hi steph & bonnie,i just read your mess. & YES IM TIRED OF BEING SICK & TIRED UPON

THAT!!!!!!!!!!!!!! just recently i had been complaining of my left side,i saw my

ra dr. & my pcp dr.they took x-rays & everything. they did not know what was

wrong,so they just gave me corts,shots to relive the PAIN & that still did not

work.i told them i know my body & allthe differ.aches & pains i have,so i knew

that something was not right.so i went to the e.r. i could not stand the PAIN

anymore.they too took x-rays & found that i have two broken ribs!!i HATE when

drs.cant find the cause but you know thERES A PROBLEM!! so the e.r.dr. gave me a

flexarile & to continue my lortabs.i feel a lil better obviously,im writting back

to problems, i can relate to.i go to my pcp today so lets see how that goes WISH

ME LUCK! god bless:melynda<melyndagamez@...>wrote:3/19/08 central time;

12:42a.m.

stephanie <stephieann2@...> wrote: You are very welcome:) I was

diagnosed with my FMS a

couple of years out of college and then disabled at

the age of 30, and I am now 36. It helps me too to

know I am not alone..I just wish they could figure it

out so they could treat us with the proper treatment.

It's frustrating to be my doctors conundrum:)

--- Bonnie <tiredtaz@...> wrote:

> Thanks ...

> Oddly enough, it helps to know I'm not alone... I

> am 32 and just

> finished college a year ago while working full time

> and raising a

> family... I have a daughter who is 11 and a husband

> that thinks he's

> 15.... ugh! Needless to say, I want and need

> answers but I'm afraid

> I wont be seeing them any time soon...

> Thanks again for the reply

>

>

> >

> > > Hello all,

> > > Its been a while since I've had the time to

> check in

> > > on this site...

> > > Dealing with what is now diagnosed as

> > > " undifferentiated Connective

> > > Tissue Disease " .... (before that it was

> Psoriatic

> > > arthritis or RA...)

> > > I have been to numerous Rhuematologists and have

> > > even been to see a so

> > > called expert in Baltimore land at the Good

> > > Samaritan Hospital...

> > > What a trip I've been on...

> > > Last month was my year anniversary for dealing

> with

> > > this illness, and

> > > I am disheartened that I'm really not much

> further

> > > in recovery as

> > > medications are still changing and new symptoms

> > > continue to appear

> > > with out warning.

> > > I find that there are at least three (normally

> 4)

> > > days a week that I'm

> > > in agony from joint pain or just tired beyond

> > > belief... I'm

> > > struggling to stay positive and I'm afraid I'm

> > > loosing the battle...

> > > The most recent Doctors appointment (I go every

> six

> > > weeks) they put me

> > > on metheltraxate along with the planquinile and

> 16

> > > milagrams of

> > > steroids... They said if it didn't work, then

> > > embrel injections would

> > > be considered at the next visit.. This worries

> me

> > > to no end as I'm

> > > already a pin cushion for blood tests, and I

> > > desperately hate needles...

> > >

> > > I guess I'm complaining.... But what I think I

> want

> > > to know is how

> > > you all deal with this? I feel so weak and

> hopeless

> > > its just ripping

> > > me apart... and stress seems to only magnify

> the

> > > symptoms to the

> > > point that I have days were I can hardly walk...

> > >

> > > Is anyone else on this site diagnosed as

> > > Undifferentiated Connective

> > > Tissue Disease? I'd love to hear from anyone

> who

> > > has any type of

> > > advise, but I'm curious as to others who have

> the

> > > same Dx and their

> > > progress..

> > > Thank You

> > > Bonnie

> > >

> > >

> >

> >

> >

> >

>

__________________________________________________________

> > Never miss a thing. Make your home page.

> > http://www./r/hs

> >

>

>

>

__________________________________________________________

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[Guest guest]

Pedro,

I hope your ribs heal, I hear that this can be very painful even when

attempting to breathe...

Thanks for the reply

> > >

> > > > Hello all,

> > > > Its been a while since I've had the time to

> > check in

> > > > on this site...

> > > > Dealing with what is now diagnosed as

> > > > " undifferentiated Connective

> > > > Tissue Disease " .... (before that it was

> > Psoriatic

> > > > arthritis or RA...)

> > > > I have been to numerous Rhuematologists and have

> > > > even been to see a so

> > > > called expert in Baltimore land at the Good

> > > > Samaritan Hospital...

> > > > What a trip I've been on...

> > > > Last month was my year anniversary for dealing

> > with

> > > > this illness, and

> > > > I am disheartened that I'm really not much

> > further

> > > > in recovery as

> > > > medications are still changing and new symptoms

> > > > continue to appear

> > > > with out warning.

> > > > I find that there are at least three (normally

> > 4)

> > > > days a week that I'm

> > > > in agony from joint pain or just tired beyond

> > > > belief... I'm

> > > > struggling to stay positive and I'm afraid I'm

> > > > loosing the battle...

> > > > The most recent Doctors appointment (I go every

> > six

> > > > weeks) they put me

> > > > on metheltraxate along with the planquinile and

> > 16

> > > > milagrams of

> > > > steroids... They said if it didn't work, then

> > > > embrel injections would

> > > > be considered at the next visit.. This worries

> > me

> > > > to no end as I'm

> > > > already a pin cushion for blood tests, and I

> > > > desperately hate needles...

> > > >

> > > > I guess I'm complaining.... But what I think I

> > want

> > > > to know is how

> > > > you all deal with this? I feel so weak and

> > hopeless

> > > > its just ripping

> > > > me apart... and stress seems to only magnify

> > the

> > > > symptoms to the

> > > > point that I have days were I can hardly walk...

> > > >

> > > > Is anyone else on this site diagnosed as

> > > > Undifferentiated Connective

> > > > Tissue Disease? I'd love to hear from anyone

> > who

> > > > has any type of

> > > > advise, but I'm curious as to others who have

> > the

> > > > same Dx and their

> > > > progress..

> > > > Thank You

> > > > Bonnie

> > > >

> > > >

> > >

> > >

> > >

> > >

> >

> __________________________________________________________

> > > Never miss a thing. Make your home page.

> > > http://www./r/hs

> > >

> >

> >

> >

>

> __________________________________________________________

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>

>

>

>

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>

>

[Guest guest]

Rita,

Thanks for the information... Is Embrel the same as Humira? My

symptoms all point to Lupus, RA, Reynaulds (diagnosed with Reynaulds 6

years ago), and they are looking for possibly Chrons because I'm not

absorbing vitamin D... My hands, wrists, ankles and tops of feet are

so inflamed that most days are pretty painful. Fortunately (or

unfortunately depending on how you look at it) my job as a social

worker allows me to sit the majority of the day the unfortunate part

is that I am required to type lengthly reports. Ouch! The meds they

have me on have been helping many of the lupus symptoms, but they

don't seem to be helping the inflammation in my joints... This week my

hip has started back up and now my elbows... I think I'm mostly

scared that my finger nails are starting to peal and get pits...

which points back to the psoriatic arthritis... I could just really

use a doctor to give me a strait answer just once! I'm sure many of

you can relate to that....

Thank you everyone for your support.... My family is supportive, but

there is no real way for them to understand what I'm really going

through. I also don't think I really want them to understand fully,

as I don't want them to treat me differently or as being weak. I've

always been the conquerer that would knock down a wall just because

you said I couldn't do it... I think I might have just have meant my

match.... But I'm still not willing to give up or give in. What a

battle we are all fighting........

Thanks again

Bonnie

-- In , Rita Wages <rita.wages@...> wrote:

>

> i have not been diagnosed with the CTD but have RA, ankylosing

spondolysis, sjorgens, etc. Don't worry about the Humira injections.

They sting/burn with injecting but results well worth it. They dont

cure you but make live a little more worth living. My symptoms are so

bad I have had to go on the duragesic patches for pain. The

methoxerate made my ulcers in stomach bleed. If you start having

constant heartburn or reflux tell your rheumy before you have big

problems. rita

>

>

> [ ] sick and tired of being sick and tired

>

> Hello all,

> Its been a while since I've had the time to check in on this site...

> Dealing with what is now diagnosed as " undifferentiated Connective

> Tissue Disease " .... (before that it was Psoriatic arthritis or RA...)

> I have been to numerous Rhuematologists and have even been to see a so

> called expert in Baltimore land at the Good Samaritan Hospital...

> What a trip I've been on...

> Last month was my year anniversary for dealing with this illness, and

> I am disheartened that I'm really not much further in recovery as

> medications are still changing and new symptoms continue to appear

> with out warning.

> I find that there are at least three (normally 4) days a week that I'm

> in agony from joint pain or just tired beyond belief... I'm

> struggling to stay positive and I'm afraid I'm loosing the battle...

> The most recent Doctors appointment (I go every six weeks) they put me

> on metheltraxate along with the planquinile and 16 milagrams of

> steroids... They said if it didn't work, then embrel injections would

> be considered at the next visit.. This worries me to no end as I'm

> already a pin cushion for blood tests, and I desperately hate needles...

>

> I guess I'm complaining. ... But what I think I want to know is how

> you all deal with this? I feel so weak and hopeless its just ripping

> me apart... and stress seems to only magnify the symptoms to the

> point that I have days were I can hardly walk...

>

> Is anyone else on this site diagnosed as Undifferentiated Connective

> Tissue Disease? I'd love to hear from anyone who has any type of

> advise, but I'm curious as to others who have the same Dx and their

> progress..

> Thank You

> Bonnie

>

>

>

>

>

>

________________________________________________________________________________\

____

> Looking for last minute shopping deals?

> Find them fast with Search.

http://tools.search./newsearch/category.php?category=shopping

>

>

[Guest guest]

Dear Bonnie:

I don't mean to sound glib, but you do eventually get used to this different and

most challenging of " lifestyles " . Unlike you, I do have a Dx, -- RA. And we've

had this " conversation " on this board before: the " knowing " is so much better

than the not knowing.

But keep in mind, a great deal of your " reaction " to this disease depends upon

your attitude.

I can say this to you b/c I've been living the life for close to 45 years now.

As far as your " fear of needles " : next time you have to give blood, ask the

technician how long they have been doing this and if they look inexperienced ask

for the supervisor. Over the years, I've learned there is only one sure place

to draw blood from my body and it is from the back of my hand.

That's it, they only get once chance with the butterfly needle, if they don't

get it they have to go get their supervisor. I've done my " teaching hospital

bit " .

I've been taking prednisone in one amount or another for 37 years. My veins are

so comprimised that when I became ill with some sort of stomach bug and got so

dehydrated, I had to be hospitalized. In the ER they couldn't find a vein for

the IV drip. Sixteen different tries: arms, hands, ankles, wrists -- you name

it. And they poor ER tech was almost in tears he was so distressed. He was a

Vietnam vet so I didn't give him a hard time. I know my veins are a wreck.

They finally had to go get the ER doc and he went for the veins in my NECK. And

then, it took THREE tries. The first two tries the veins collapsed. Very creepy

feeling, cold, ripply feeling. (It didn't help that they ER doc was a total

ass, but I was so out of it by then, I couldn't call him on the carpet for

it....).

I'm sorry to say, but one aspect of the lifestyle is feeling like a pincushion.

Two: I've been giving myself Enbrel injections for years. THEY DON'T HURT.

Honest. The needles are so small, and if you just get brave and stick that

thing in your thigh as fast as you can, you don't feel it.

But then, when someone asks me: " Does this hurt? " I always have to ask them:

" Compared to what? "

If given the choice: pin prick or RA flare? I'll take the pin prick of the

enbrel needle to keep the RA flare under control.

And remember, there are alternative ways to deal with the pain. Don't be afraid

to explore them.

I hope you feel better soon.

Good Luck

Shauna

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[Guest guest]

I'm sorry for your pain and frustration! I feel like I am saying that

phrase all the time " i'm sick and tired of being sick and tired " ...it

so perfectly describes how we all feel. I know how frustrating

diagnosis stuff can be....it took them five years for finally figure

out that I had both FMS and RA. I'm new to the RA stuff, so I dont

know if I have any magic tips for how to deal with things, but I have

dealt with chronic pain for as long as i can remember. i think one of

the best things for me has been to make sure that i dont isolate

myself....to let other people be there for me and to be there for

them too. and to try to enjoy the little things in life that i am

still able to. and to not stifle my emotions...to cry when i need to

or laugh when i want to, u know? i know we dont have the same

diagnosis, but i hope that helps.

>

> Hello all,

> Its been a while since I've had the time to check in on this

site...

> Dealing with what is now diagnosed as " undifferentiated Connective

> Tissue Disease " .... (before that it was Psoriatic arthritis or

RA...)

> I have been to numerous Rhuematologists and have even been to see a

so

> called expert in Baltimore land at the Good Samaritan

Hospital...

> What a trip I've been on...

> Last month was my year anniversary for dealing with this illness,

and

> I am disheartened that I'm really not much further in recovery as

> medications are still changing and new symptoms continue to appear

> with out warning.

> I find that there are at least three (normally 4) days a week that

I'm

> in agony from joint pain or just tired beyond belief... I'm

> struggling to stay positive and I'm afraid I'm loosing the

battle...

> The most recent Doctors appointment (I go every six weeks) they put

me

> on metheltraxate along with the planquinile and 16 milagrams of

> steroids... They said if it didn't work, then embrel injections

would

> be considered at the next visit.. This worries me to no end as I'm

> already a pin cushion for blood tests, and I desperately hate

needles...

>

> I guess I'm complaining.... But what I think I want to know is how

> you all deal with this? I feel so weak and hopeless its just

ripping

> me apart... and stress seems to only magnify the symptoms to the

> point that I have days were I can hardly walk...

>

> Is anyone else on this site diagnosed as Undifferentiated Connective

> Tissue Disease? I'd love to hear from anyone who has any type of

> advise, but I'm curious as to others who have the same Dx and their

> progress..

> Thank You

> Bonnie

>