Newly Diagnosed

[Guest guest]

Hi : I am so sorry that RA reared its ugly head into your body

and your life. It hit me 6 1/2 years ago, and I had never heard of it,

or did I know anything about it. I decided to check it out on my

computer, got on the site, read a few lines, and bam, I shut off my

computer. I was scared to death after only reading a few things. I

never checked it out again. Fear!!!!

It is a scary disease, and it does change your life. Has your Rheumy

started you on any meds.? Are you on MTX and Prednisone? One thing I

did learn was that RA has to be treated aggressively from day one.

When I was daignosed, I was in agony, swollen, could bearly walk, and

almost in a wheel chair. I lived on Cape Cod, and soon moved here to

Florida . I have finally found the " right cocktail " of meds. and am

doing wonderful. I truly thought I would never see this happen for me.

I have been in a medicine induced remission since last Oct.

My feet, ankles, hands, and wrists were hit the hardest. When I flared,

I literally could not get out of bed or stand or walk on my feet. It

was brutal.

Now I am great. I take MTX injection 1x a week, 12 hours later I take

2 Leucovorin. Everyday I take 1 Prednisone, 10 mg., 6 Sulfasalazine

pills, and 2 Placquenil pills. I also take 1 iron pill daily. I have

my blood drawn once a month for my Rheumy. They have to check your

liver to be sure the meds. aren't causing a problem.

About 3 weeks ago, I started to decrease my Pred. dose, but it didn't

work well for me. I started having feet and ankle problems, and my hand

and fingers swelling. I am back to my orig, dose of 10 mg, and fell so

much better. I caught this flare in time. Only one finger remains

swollen and very sore.

As far as family understanding what we are going through, the pain, the

need to rest, all of it, they just don't get it. The people who truly

know are all of us here. Anyone that is fortunate to not have RA will

never begin to know. That is just how it is.

You will just love it here. It has made a big difference in my life. I

love everyone here. I have learned so much about RA, they know exactly

what you need to know. is our moderator and does wonderful

research for us. She too has RA, and knows our daily battle.

You can cry, vent, yell, say anything to us, and we will be there for

you. Believe me, I have poured my heart out here, and everyone has

been there for me. The support here is incredible. I thank God that I

found this wonderful group of caring, loving, friends. And friends they

are.

How I deal with RA everyday is, I take one day at a time. When I was in

bad shape, it was minute by minute. I have a wonderful caring and

loving Rheumy. She is taking such good care of me. She is so

compassionate and understanding. When I am in bad pain, she writes me

an RX for it. If that doesn't work, she will write another one for

something else. It is so important to get pain under control. If we

don't, we have no life. When I was riddled with horrible pain, I

thought I would lose my mind. I can not function under these

circumstances. No one can. That is why it is so imperative to tell

your Rheumy what your pain level is. He/she needs to write you an RX to

find the right pain meds. for you. There is no need to suffer in this

day and age. You owe it to yourself to find a Rheumy that cares about

you enough to ease your pain and suffering.

I hope this helps you, and that it is not too long. I pray you will

have pain free days ahead. It does take time to find the right meds.

but it can be done. I am proof of that.

Each day I make a mental plan of what I want to get done that day. If I

get things done, great, if not, I will do them another day. I don't

appoligize to anyone anymore if I can't go with them or I am too tired

to go. I used to feel so guilty about that. Not anymore. I also used

to appoligize if I needed to rest often. My Rheumy insists that I take

a daily afternoon nap. even if I don't sleep, I am off my feet and

resting. The hardest thing for me to do was pace myself. I have

finally mastered that skill.

Again , welcome here. You did a wonderful thing for yourself by

joining our group. Wishing you better days ahead.

Hugs,

Barbara

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

wrote:

>

> I am 39 years old and I am newly diagnosed....and very overwhelmed.

> It has been under a month since my preliminary diagnosis.

> And only a week since my definitive diagnosis of RA.

> Between the pain, and just the idea....I do not know how to handle it.

> I am married, but my husband appears to be in denial, for a lack of

better words.

>

> Yesterday and today have been quite hard....my pain is pretty severe,

expecially in hips and knees. ANd it is weighing very heavy on my

emotions.

>

> Does the pain improve?

> How do you cope?

>

>

>

[Guest guest]

Hi...

I was diagnosed last July 2008, The most difficult thing is that first diagnosis

and all the implications. But the fact is, no one wants to be diagnosed with an

incurable chronic disease. But, there are a lot worse things than Rheumatoid

Arthritis. This first thing is an early aggressive treatment plan. A

rheumatologist will work with you to determine what that is, tell the

rheumatologist everything, and don't think you have to live with pain or

" endure " the consequences of your disease. The physician has to know what's

going on to treat the symptoms, unfortunately RA affects everyone differently so

it takes time to find a treatment plan that works for you. Also, it takes time

to metabolize the medication to determine if it is appropriate for your

condition. Fortunately, in a weird way, this is a good time to have RA because

there are many many different medications now available to treat your symptoms,

historically that has not always been the case. Being newly diagnosed is

overwhelming, but you can rely on this Group to help with it, there is a lot of

support and encouragement here and most of what you are going through is

something we've all been through, but it is different for everyone. I did look

at it as the five stages of grief when I was first diagnosed, denial being the

first. But after one year and two months I can tell you RA is quite manageable

and life is hopeful and as always it will march forward if you want it to.

Stan,

Seattle, cloudy.

Sent: Tuesday, August 25, 2009 9:32:49 AM GMT -08:00 US/Canada Pacific

Subject: [ ] Newly Diagnosed

I am 39 years old and I am newly diagnosed....and very overwhelmed.

It has been under a month since my preliminary diagnosis.

And only a week since my definitive diagnosis of RA.

Between the pain, and just the idea....I do not know how to handle it.

I am married, but my husband appears to be in denial, for a lack of better

words.

Yesterday and today have been quite hard....my pain is pretty severe, expecially

in hips and knees.   ANd it is weighing very heavy on my emotions.

Does the pain improve?

How do you cope?

[Guest guest]

Hi ,

I am also!  I was 44 when diagnosed and very inflammed and in pain,

mostly in my hands, hips and feet at the time.  I got in to a rheumatologist

relatively quickly as I asked them to put me on the cancellation list and called

their office every morning to see if I could get in.  I have since switched MDs

but I am on Plaquenil and doing very well now.  I tried an elimination diet when

first diagnosed which helped me alot.  The worst part, of course, is dealing

with the fact that you have this THING now.  I was determined not to and did not

want meds at first, but I did not want the disease to progress either so I

accepted that fact..  I am doing very well now.  RA affects everyone

differently.  Most days I have little to no pain.  I have a full time job as a

physical therapist assistant and a part time business as a massage therapist and

two teenagers!  You will hear that " you don't look sick " .  It is maddening at

times but people don't

know any better, for lack of better words.  There is a lot of information out

there and I know it can all be very overwhelming.  This group is very helpful. 

Hope this helps,

, Upstate NY

Beautiful sunny day

________________________________

From: dptexdreamr <dptexdreamr@...>

Sent: Tuesday, August 25, 2009 12:32:49 PM

Subject: [ ] Newly Diagnosed

 

I am 39 years old and I am newly diagnosed... .and very overwhelmed.

It has been under a month since my preliminary diagnosis.

And only a week since my definitive diagnosis of RA.

Between the pain, and just the idea.....I do not know how to handle it.

I am married, but my husband appears to be in denial, for a lack of better

words.

Yesterday and today have been quite hard....my pain is pretty severe, expecially

in hips and knees. ANd it is weighing very heavy on my emotions.

Does the pain improve?

How do you cope?

[Guest guest]

Thank you Stan for the very supportive words and information.

Houston

Re: [ ] Newly Diagnosed

Hi...

I was diagnosed last July 2008, The most difficult thing is that first diagnosis

and all the implications. But the fact is, no one wants to be diagnosed with an

incurable chronic disease. But, there are a lot worse things than Rheumatoid

Arthritis. This first thing is an early aggressive treatment plan. A

rheumatologist will work with you to determine what that is, tell the

rheumatologist everything, and don't think you have to live with pain or

" endure " the consequences of your disease. The physician has to know what's

going on to treat the symptoms, unfortunately RA affects everyone differently so

it takes time to find a treatment plan that works for you. Also, it takes time

to metabolize the medication to determine if it is appropriate for your

condition. Fortunately, in a weird way, this is a good time to have RA because

there are many many different medications now available to treat your symptoms,

historically that has not always been the case. Being newly diagnosed is

overwhelming, but you can rely on this Group to help with it, there is a lot of

support and encouragement here and most of what you are going through is

something we've all been through, but it is different for everyone. I did look

at it as the five stages of grief when I was first diagnosed, denial being the

first. But after one year and two months I can tell you RA is quite manageable

and life is hopeful and as always it will march forward if you want it to.

Stan,

[Guest guest]

Hi ,

I was diagnosed last year, and I'm 38. I had a lot of pain but my doctor gave

me some pain meds and they helped tremendously until the methotrexate/plaquenil

started working (about 4-6 weeks). I still have pain but nothing like it was!

Sorry that your husband doesn't understand. We do though!

Jodie

>

> I am 39 years old and I am newly diagnosed....and very overwhelmed.

> It has been under a month since my preliminary diagnosis.

> And only a week since my definitive diagnosis of RA.

> Between the pain, and just the idea....I do not know how to handle it.

> I am married, but my husband appears to be in denial, for a lack of better

words.

>

> Yesterday and today have been quite hard....my pain is pretty severe,

expecially in hips and knees. ANd it is weighing very heavy on my emotions.

>

> Does the pain improve?

> How do you cope?

>

>

>

[Guest guest]

I can say with the proper meds in place and some type of therapy after my

initial diagnosis I felt better than I had in years. I worked a strenous and

long hour job in a plant on cement floor. I worked 70 hours or more a week

until one day I could not take the pain anymore. Not knowing was the hard

part about what was causing me so much pain. I ignored the pain and took

tylenol or any OTC med that would ease the pain, not take it away. I worked

in pain for 3 years before finding out what was wrong. I still tried to work

and then one day I went to the bathroom and passed out. Woke up and could

not feel my right leg at all. I had made an old injury worse and a disc was

pressing on a nerve in my lower back and legs. My family did not believe

me and thought that I was just acting. Until the tests ran all came back

nothing but bad arthritis with inflammation. Rheumatoid arthritis specialist

came to see me in the ER and set me up an appointment to be seen in his

office 2 weeks after. I went and all kinds of tests ran and was told I had RA.

I went back to work and hyped up on pain meds and xanax I was able to

work. But it hit me harder than before, the pain did and I could not move

without crying. I went home and the next morning could not walk again. I went

to

ER and they kept me for 4 days. I came home with a walking stick and when

I went back to my RA Dr. then he told me that I should not try to work or I

would be paralyzed or in a wheel chair permanently. I took his advice, but

being a new widow and 2 very small kids to take care of I had to work. I

had no-one to help me and family was all about me helping them when I got

paid each week. I was off work for 3 months and withdrew my 401K and got

things in order for myself and kids. I had a hard time of things and but my Dr.

told me if I had stayed off work and let the meds kick in I would have been

able to possibly do my job lightly. At the time I was in severe pain and

even now when the flare ups start they last for me until I get a pain shot

to control the pain and or total bedrest. I have been on Rituxin, Remicade,

Humira and methotrexate along with prednisone, even losing 145 lbs to take

pressure off joints. All are good, but can be expensive as well as exercise

with limitations. I cope with prayer, limitations of what I can do,

acceptance of this and don't care what others think. I used to complain to my

kids and those whom I thought would listen, but after a while they acted

like...oh you in pain so what and ignored me when I was crying for the pain

meds

to start working. I see I am not alone in this fight, but alone at home

trying to win. I wish you well in trying to find relief.

Irish

In a message dated 8/25/2009 11:35:46 A.M. Central Daylight Time,

dptexdreamr@... writes:

I am 39 years old and I am newly diagnosed...I am 39 years old and I am

It has been under a month since my preliminary diagnosis.

And only a week since my definitive diagnosis of RA.

Between the pain, and just the idea....I do not know how to handle it.

I am married, but my husband appears to be in denial, for a lack of better

words.

Yesterday and today have been quite hard....my pain is pretty severe,

expecially in hips and knees. ANd it is weighing very heavy on my emotions.

Does the pain improve?

How do you cope?

[Guest guest]

I have just been diagnosed with SLE and possibly dermatomyositis, I am waiting

on lab results right now. It all started with a quarter sized rash on my chest a

little over a year ago. Then came the muscle weakness, cognitive issues,

fatique, joint pain, " static " feeling etc. Initially I was diagnosed with

fibromyalgia and then I had a skin biopsy and tons of lab work and they

indicated lupus and dermatomyositis so I was referred to a rheumatologist. He

says definitely lupus with possible dermatomyositis overlapping.

Amy