Re: The doctor says I have RA...overwhelmed

[Guest guest]

Hi ,

I post rarely but was very touched by your email to the group. While an RA

diagnosis is tough at any age, I think it can be moreso when at the peak of life

(for many people). I am 31, but I was diagnosed at 9, so I haven't struggled

emotionally the way many do; RA has basically always been a part of my life.

Try not to be too discouraged early on. Many of the new drugs to slow RA's

progression are amazing, and there are tons of people here who are doing great -

living mostly normal lives - on them. It's very likely that you'll be back

typing comfortably once a doctor gets you on the right medication or combination

of medications. I am a classically trained pianist, and while I quit teaching

piano full time when my RA got really bad, I am still able to play for pleasure.

I work a very physical job, and while I'm exhausted at the end of the day, I am

active and fulfilled.

I am a strong believer in the power of a little exercise and fresh air to make

myself feel better - you may want to try just getting out for a bit, even if it

is just a walk from your porch to the street and back. You can tape record your

writing ideas and type them (or have someone else type them) when you're feeling

up to it - and you can even do that outside, if you want!

I hope things are better for you soon. Hang in there!!

Kate P-B in St. Louis

Sent from my Verizon Wireless BlackBerry

[Guest guest]

Hi !

Receiving a diagnosis of RA is VERY overwhelming. You have come to a good group

though. I am 40 and was diagnosed last November after almost a year of

unexplained joint pain after having a Strep infection. Once you see a

Rheumatologist, then you can start to work on a plan to treat your RA and your

pain. Moving as much as you can does help, even if it is only a little bit. I

have 2 little girls, so I make myself keep moving - I have found that the more I

move, the better I feel. You will be able to type again! I actually do medical

transcription for a Rheumatologist (ironic huh!)and was also worried because the

pain in my fingers, but it has eased up.

This is the best place to " whine " , all of us here DO understand better than

anyone!

Hang in there and stay positive! (I stopped researching on-line because it

depressed me too!)

Donna

[Guest guest]

Hi and welcome! Chin up! This disease can be ornery, but we are lucky to

live in an age of many options. When are you seeing a rheumatologist? It's

important to get going on treatment asap and that includes treating your

depression which may be exacerbated by the pain and inflammation of the RA. When

I flare, I'm flat as a pancake but when I'm in a drug controlled remission I am

generally bubbly and happy. I take Enbrel and work FT while chasing a 6 and soon

to be two year old. Living well with RA is possible. Kate F

Sent from my iPhone

On Apr 28, 2010, at 7:15 AM, " clinicquotes " <sarah5775@...> wrote:

I just got the results of my blood tests today.

The doctor is referring me to a rhumatologist. He says it looks like I have RA.

I have been researching this condition for hours and am becoming completely

overwhelmed and VERY depressed.

I don't understand how this could have happened. Less than a year ago, I was

fine- now it hurts all the time, and I can no longer type- disastrous for an

aspiring writer like me.

It all started with pain in my left hand. The doctor said it was a sprain, said

to put ice on it. It didn't get better. Sent me for physical therapy for a

sprain. It got worse, then my other hand started. Soon I could not type,

couldn't wash dishes, couldn't do anything. It seemed to get worse so fast. I

love to read, but cannot even hold a paperback book!

The celebrex my dr put me on has been giving me a little relief. I've been

taking it a little over two weeks now, and the pain is a little better, but

still very difficult to deal with.

A little about me- I am a 34 year old woman, live in an apt alone and have been

in treatment for recurring clinical depression for years. Many times throughout

my life, I have struggled with thoughts (and, some years ago, actions) of ending

my life- and this has certainly triggered a lot of that kind of thinking. I do

not intend to act on those feelings- I know that isn't the answer, but I am

saying this to explain just how upset I am. It just seems so devastating. I do

not know how I am going to get through this, emotionally or physically.

I am hoping for some support and maybe some advice. I realize this is going to

be a very long, hard road. It scares and depresses me.

Thank you for listening to me whine.

[Guest guest]

I think many of us when we get the diagnosis feel overwhelmed but I am sure you

will find a lot of support here. I work in a library and love to read too. I

have started listening to books on cd and that helps as far as not having to

hold up a book for a long period of time.

There are meds out there that can have you feeling better soon. The trick is

finding the right one that works for you. Also a lot of times with the meds you

will have to be followed closely with blood tests so don't be surprised by that.

I guess that the most important

thing to do is to get into a rheumatologist as soon as you can find one to take

you and

begin the treatment. Some treatments may take longer than others to kick in.

Make sure you tell your doc about your depression diagnosis as well.

Feel free to email any of us at any time with questions etc.

I agree with Kate that living with RA while at times can be very hard but it is

possible to

still live a good life.

 

~~~~~~~~~~Joy~~~~~~~~~

 

I just got the results of my blood tests today.

The doctor is referring me to a rhumatologist. He says it looks like I have RA.

I have been researching this condition for hours and am becoming completely

overwhelmed and VERY depressed.

I don't understand how this could have happened. Less than a year ago, I was

fine- now it hurts all the time, and I can no longer type- disastrous for an

aspiring writer like me.

It all started with pain in my left hand. The doctor said it was a sprain, said

to put ice on it. It didn't get better. Sent me for physical therapy for a

sprain. It got worse, then my other hand started. Soon I could not type,

couldn't wash dishes, couldn't do anything. It seemed to get worse so fast. I

love to read, but cannot even hold a paperback book!

The celebrex my dr put me on has been giving me a little relief. I've been

taking it a little over two weeks now, and the pain is a little better, but

still very difficult to deal with.

A little about me- I am a 34 year old woman, live in an apt alone and have been

in treatment for recurring clinical depression for years. Many times throughout

my life, I have struggled with thoughts (and, some years ago, actions) of ending

my life- and this has certainly triggered a lot of that kind of thinking. I do

not intend to act on those feelings- I know that isn't the answer, but I am

saying this to explain just how upset I am. It just seems so devastating. I do

not know how I am going to get through this, emotionally or physically.

I am hoping for some support and maybe some advice. I realize this is going to

be a very long, hard road. It scares and depresses me.

Thank you for listening to me whine.

     

[Guest guest]

Hi

I have had ra for over 10 years now and in the beginning was so bad, I

couldn't move but after finally getting in to see a great rheumy, I am

great, I do everything that I used to do including quilt.

You need a good rheumy and either a dmard or a biologic.

in pa

Sent from my iPod

On Apr 28, 2010, at 8:15 AM, " clinicquotes " <sarah5775@...> wrote:

> I just got the results of my blood tests today.

>

> The doctor is referring me to a rhumatologist. He says it looks like

> I have RA. I have been researching this condition for hours and am

> becoming completely overwhelmed and VERY depressed.

>

> I don't understand how this could have happened. Less than a year

> ago, I was fine- now it hurts all the time, and I can no longer

> type- disastrous for an aspiring writer like me.

>

> It all started with pain in my left hand. The doctor said it was a

> sprain, said to put ice on it. It didn't get better. Sent me for

> physical therapy for a sprain. It got worse, then my other hand

> started. Soon I could not type, couldn't wash dishes, couldn't do

> anything. It seemed to get worse so fast. I love to read, but cannot

> even hold a paperback book!

>

> The celebrex my dr put me on has been giving me a little relief.

> I've been taking it a little over two weeks now, and the pain is a

> little better, but still very difficult to deal with.

>

> A little about me- I am a 34 year old woman, live in an apt alone

> and have been in treatment for recurring clinical depression for

> years. Many times throughout my life, I have struggled with thoughts

> (and, some years ago, actions) of ending my life- and this has

> certainly triggered a lot of that kind of thinking. I do not intend

> to act on those feelings- I know that isn't the answer, but I am

> saying this to explain just how upset I am. It just seems so

> devastating. I do not know how I am going to get through this,

> emotionally or physically.

>

> I am hoping for some support and maybe some advice. I realize this

> is going to be a very long, hard road. It scares and depresses me.

>

> Thank you for listening to me whine.

>

>

>

>

[Guest guest]

Thank you so much for your responses, it makes me feel A LOT better to have

people to talk to who understand! I have to get a referral from my gp to see

the rheumatolgist. The doctor's office called me and told me that they

couldn't find a rheumatologist anywhere that took my insurance! That sure

stressed me out!!! I called the insurance company and thank god they were

able to give me the addresses of two. Unfortunately, they are all over 45

minutes away and I don't have a car. My dad agreed to drive me, which is

really good of him- but truth me told.,my parents are making it a lot worse.

Since I don't have a car and have mental health issues, I am more dependent

on my parents them most people my age, unfortunately. My dad keeps telling

me that I probably don't *really* have anything wrong with me, that I am no

doubt exaggerating what the dr. told me, etc. When he came over last night

to drop off a phone (mine didn't work) he spent fifteen minutes screaming at

me about how messy my apartment was. When I told him about my pain, he gave

his usual line " You don't have pain, you don't know what pain is, I have

slipped disks in my back, you don't hear me whining, etc. " Needless to say,

that does not help. My dad has pretty much convinced my mom that I'm

exaggerating the whole thing and that there's nothing really wrong with me.

We had a huge fight this morning. I know this sounds crazy, but I am

thinking of taking a tape recorder in to see the rheumatologist and

recording what he says to play back for my parents.

All in all I guess I need to be grateful that I at least have a ride! Yet

one of those times that I realize how much I need a car. unfortunately I

have not been able to afford one since my own broke down completely.

I'm sorry, I probably shouldn't have gotten in to all of that. What I really

meant to do in this email is thank you all, because your responses are

really helping. It is good to know that pain might go away or lessen when I

get on some medication.

On Wed, Apr 28, 2010 at 2:24 PM, Mcnally <mhm423@...> wrote:

>

>

> Hi

>

> I have had ra for over 10 years now and in the beginning was so bad, I

> couldn't move but after finally getting in to see a great rheumy, I am

> great, I do everything that I used to do including quilt.

>

> You need a good rheumy and either a dmard or a biologic.

>

> in pa

>

> Sent from my iPod

>

[Guest guest]

i have ra since i was 32, now i'm 58.its been ups and downs

through the years.you have to get the right meds,then they stop working

you go on to the next,there always coming up with new meds. had most

starting orencia next.hang in there things will get better

had the same problem with my family,at least my husband knows

what i go through every day,i raised 2 kids with ra.so the meds do work.

this is a great group for info and just to vent,which helps alot.

 

ann

From: clinicquotes <sarah5775@...>

Subject: [ ] The doctor says I have RA...overwhelmed

Date: Wednesday, April 28, 2010, 8:15 AM

 

I just got the results of my blood tests today.

The doctor is referring me to a rhumatologist. He says it looks like I have RA.

I have been researching this condition for hours and am becoming completely

overwhelmed and VERY depressed.

I don't understand how this could have happened. Less than a year ago, I was

fine- now it hurts all the time, and I can no longer type- disastrous for an

aspiring writer like me.

It all started with pain in my left hand. The doctor said it was a sprain, said

to put ice on it. It didn't get better. Sent me for physical therapy for a

sprain. It got worse, then my other hand started. Soon I could not type,

couldn't wash dishes, couldn't do anything. It seemed to get worse so fast. I

love to read, but cannot even hold a paperback book!

The celebrex my dr put me on has been giving me a little relief. I've been

taking it a little over two weeks now, and the pain is a little better, but

still very difficult to deal with.

A little about me- I am a 34 year old woman, live in an apt alone and have been

in treatment for recurring clinical depression for years. Many times throughout

my life, I have struggled with thoughts (and, some years ago, actions) of ending

my life- and this has certainly triggered a lot of that kind of thinking. I do

not intend to act on those feelings- I know that isn't the answer, but I am

saying this to explain just how upset I am. It just seems so devastating. I do

not know how I am going to get through this, emotionally or physically.

I am hoping for some support and maybe some advice. I realize this is going to

be a very long, hard road. It scares and depresses me.

Thank you for listening to me whine.

[Guest guest]

,

Never feel you can't say anything about your life, especially since you now have

RA. Someone on this list will be able to relate on a personal level with what

you are going through. Honest! For example, my BF made the mistake of calling

me lazy about a month ago. I made him take me to my next Rheumy appointment.

He got to hear my doctor ask about fatique, pain levels, my hips, the recent

spine surgery, and that my Rheumy thought I now have something else going on

besides my RA. It was an eye-openner for him, and I think he is good for at

least 6-9 months before he needs another dose of RA reality. So, maybe not your

first visit, but maybe your second or third visit, take your dad into your

appointment with the Rheumy, and ask the RA Doc to explain what RA is, and how

it is affecting you. Yes, I've got problems with my spine/discs too(caused by

RA), but I've had surgery to make it better. Tell your dad next time he says he

has pain, to go to a orthopedic doctor and get his back fixed, once and for all.

RA can't be cured, only treated.

Now, there is a computer program called Dragon Naturally for voice recognition

software. That what when your hands/fingers flare, like now, you can still

write by speaking into the computer. Depending on where you live some community

colleges will have free, or next to free classes for this program.

If you aren't on any antidepression medication, ask your primary about getting

on one. Believe it or not, they can help with pain. There are a lot of us on a

SSRI. I know that for myself, I notice if I am not taking one regularly.

Since you know that you have a couple of issues going on, I would like to

recommend another support list, www.butyoudontlooksick.com/boards

A lot of younger folks, a good place to whine, and get understanding. Most of

them have or are going through the same family stuff you are. They also help

each other out with going to school, trying to find work, etc. It is the

website that has the " Spoon Theory " on it. If you have not read that, find it

on there website and read it.

After the initial shock wears off, you will be able to tackle this beastie.

[Guest guest]

Thank you so much. I really appreciate it. It is so comforting to feel that

I can share things with the group! My friends have been really supportive,

but you can tell they don't really know what to say, and can't give me the

same kind of understanding.

We must be thinking along the same wavelength. I just ordered the Dragon

software this afternoon! I will let the group know what its like and how

well it works.

Thank you for the other information. I will check out those groups.

And yes, I am on an antidepressent, wellbutrin, which seems to help the

depression quite a bit- don't know if it has any effect on pain because I've

been taking it for over a year know, since before the pain really started.

On Wed, Apr 28, 2010 at 10:40 PM, cynthiadew1 <cynthiadew1@...> wrote:

>

>

> ,

>

> Never feel you can't say anything about your life, especially since you now

> have RA. Someone on this list will be able to relate on a personal level

> with what you are going through. Honest! For example, my BF made the mistake

> of calling me lazy about a month ago. I made him take me to my next Rheumy

> appointment. He got to hear my doctor ask about fatique, pain levels, my

> hips, the recent spine surgery, and that my Rheumy thought I now have

> something else going on besides my RA. It was an eye-openner for him, and I

> think he is good for at least 6-9 months before he needs another dose of RA

> reality. So, maybe not your first visit, but maybe your second or third

> visit, take your dad into your appointment with the Rheumy, and ask the RA

> Doc to explain what RA is, and how it is affecting you. Yes, I've got

> problems with my spine/discs too(caused by RA), but I've had surgery to make

> it better. Tell your dad next time he says he has pain, to go to a

> orthopedic doctor and get his back fixed, once and for all. RA can't be

> cured, only treated.

>

> Now, there is a computer program called Dragon Naturally for voice

> recognition software. That what when your hands/fingers flare, like now, you

> can still write by speaking into the computer. Depending on where you live

> some community colleges will have free, or next to free classes for this

> program.

>

> If you aren't on any antidepression medication, ask your primary about

> getting on one. Believe it or not, they can help with pain. There are a lot

> of us on a SSRI. I know that for myself, I notice if I am not taking one

> regularly.

>

> Since you know that you have a couple of issues going on, I would like to

> recommend another support list, www.butyoudontlooksick.com/boards

> A lot of younger folks, a good place to whine, and get understanding. Most

> of them have or are going through the same family stuff you are. They also

> help each other out with going to school, trying to find work, etc. It is

> the website that has the " Spoon Theory " on it. If you have not read that,

> find it on there website and read it.

>

> After the initial shock wears off, you will be able to tackle this beastie.

>

>

>

>

>

>

[Guest guest]

Hi !

My husband was diagnosed with RA a little over a year ago, although he was

suffering for at least 2 years prior to that. I can remember the day I came

home from work and he said, " I think I have rheumatoid arthritis! " I smiled and

said, " I think you spent too much time on WebMD today! " Yikes, that was a bit

harsh on my part. It was hard to think of him as having something with the word

" arthritis " in the diagnosis. After all he was only 32!

I lived with him, so I knew he was suffering. However, I thought his aches and

pains were from staying in bed, because of depression. My real AHAH moment was

sitting in the Rheumy's office for the first time. The doctor did an exam and

pointed out all the joints that were swollen and fluid filled. He explained the

disease in a way that it was now clearer for me to understand, and also the

importance of taking aggressive measures to treat the disease. I still attend

all of his Rheumy visits, mostly because he is unable to drive the 2hrs to get

there. Each visit I have my eyes opened to how he is really feeling and coping

with the disease. The doctor also informed us that it is not normal to have

aches and pains on a daily basis in your 30's, it indicates something is wrong!

His parents also were in disbelief at first. They suggested all kinds of other

possibilities of what could be wrong. They also sent all kinds of suggestions

for " supplements " taken by their friends for " arthritis " . They were well

meaning, but didn't understand fully. In the last six months, they had a close

friend diagnosed with clinical depression and RA. It was a real eye opener for

them. All of a sudden they could see it as a disease, and not something their

son was using to get attention.

There are many people in your life that will never comprehend what you go

through on a daily basis. And many with " arthritis " will say they feel just

like you, but they take this or that pill/herb and it is all gone now. I have

found the best way for me to stress how serious RA is when speaking with friends

and family, was to say, " My husband has an auto-immune disease. " That makes

most people snap to attention and realize the scope of this disease. I also

like to explain RA as having the flu 24/7. (I know it's not exactly like that,

but most people have had the flu and know how horrible that can feel.)

I don't know your parents, but some parents have a hard time dealing with a

diagnosis like RA because it is linked to genetics. It triggers some sense of

responsibility for your problems. It is not logical to blame a parent when you

inherit something, but some parents think that is what you are trying to do.

(ask me how I know?!)

The first year was really tough for both of us. You really should talk to your

primary care immediately about the depression. Also speak with your Rheumy once

you get an appointment. Unfortunately, the depression my husband had at the

initial diagnosis was not the worst. He has battled with the ups and downs of

emotions as we have experimented with various drug " cocktails " . We have not

found anything that works wonders for him yet, although his current treatment

gives him some relief.

This group is great support! I don't post often, but I read it every day. At

first it was depressing and overwhelming to read everyone's problems. But now,

it gives me hope. If all of these people can keep going despite their

challenges and trials, then I know my husband and I will be able to navigate

this maze of a disease. Many times research here has helped us make difficult

medical decisions with more confidence.

Wishing you pain free days soon...

Kate

[Guest guest]

Kate thank you for writing your post! It spoke a lot to me! I have a diagnosis

from my GP for RA (family history, high RA factor and symptoms), waiting for my

first rheumy appt.

I was really surprised when I wrote my friends about it and nobody responded,

like it was no big deal. My mom on the other hand has gone overboard the other

way, which makes me anxious every time I talked to her. She's having everybody

telling her 'what' I should do and she's passing it along to me. I appreciate

her concern and I feel it's just too early to tell her 'stop!!!'.

Charlotte

>

> Hi !

>

> My husband was diagnosed with RA a little over a year ago, although he was

suffering for at least 2 years prior to that. I can remember the day I came

home from work and he said, " I think I have rheumatoid arthritis! " I smiled and

said, " I think you spent too much time on WebMD today! " Yikes, that was a bit

harsh on my part. It was hard to think of him as having something with the word

" arthritis " in the diagnosis. After all he was only 32!

>

> I lived with him, so I knew he was suffering. However, I thought his aches

and pains were from staying in bed, because of depression. My real AHAH moment

was sitting in the Rheumy's office for the first time. The doctor did an exam

and pointed out all the joints that were swollen and fluid filled. He explained

the disease in a way that it was now clearer for me to understand, and also the

importance of taking aggressive measures to treat the disease. I still attend

all of his Rheumy visits, mostly because he is unable to drive the 2hrs to get

there. Each visit I have my eyes opened to how he is really feeling and coping

with the disease. The doctor also informed us that it is not normal to have

aches and pains on a daily basis in your 30's, it indicates something is wrong!

>

> His parents also were in disbelief at first. They suggested all kinds of

other possibilities of what could be wrong. They also sent all kinds of

suggestions for " supplements " taken by their friends for " arthritis " . They were

well meaning, but didn't understand fully. In the last six months, they had a

close friend diagnosed with clinical depression and RA. It was a real eye

opener for them. All of a sudden they could see it as a disease, and not

something their son was using to get attention.

>

> There are many people in your life that will never comprehend what you go

through on a daily basis. And many with " arthritis " will say they feel just

like you, but they take this or that pill/herb and it is all gone now. I have

found the best way for me to stress how serious RA is when speaking with friends

and family, was to say, " My husband has an auto-immune disease. " That makes

most people snap to attention and realize the scope of this disease. I also

like to explain RA as having the flu 24/7. (I know it's not exactly like that,

but most people have had the flu and know how horrible that can feel.)

>

> I don't know your parents, but some parents have a hard time dealing with a

diagnosis like RA because it is linked to genetics. It triggers some sense of

responsibility for your problems. It is not logical to blame a parent when you

inherit something, but some parents think that is what you are trying to do.

(ask me how I know?!)

>

> The first year was really tough for both of us. You really should talk to

your primary care immediately about the depression. Also speak with your Rheumy

once you get an appointment. Unfortunately, the depression my husband had at

the initial diagnosis was not the worst. He has battled with the ups and downs

of emotions as we have experimented with various drug " cocktails " . We have not

found anything that works wonders for him yet, although his current treatment

gives him some relief.

>

> This group is great support! I don't post often, but I read it every day. At

first it was depressing and overwhelming to read everyone's problems. But now,

it gives me hope. If all of these people can keep going despite their

challenges and trials, then I know my husband and I will be able to navigate

this maze of a disease. Many times research here has helped us make difficult

medical decisions with more confidence.

>

> Wishing you pain free days soon...

> Kate

>