Re: FMS patient just diagnosed with RA

[Guest guest]

Make sure you have a knowledgeable, compassionate, caring

rheumatologist who will treat your RA aggressively from the start,

before that good " window of opportunity " is gone.

Sue

On Tuesday, November 7, 2006, at 04:16 PM, Paige wrote:

>

> If you could share just one piece of advice about someone just

> diagnosed with this

> disease, what would it be?

>

[Guest guest]

I would say to not get hooked on the prednisone. This happened to me and I have

been trying to

wean off it and it is horrible. It is great for a flair but I wish I would

not have started taking it and staying

on it like I did.

Joy

Paige <paigec38@...> wrote:

Greetings:

I was diagnosed with Fibromyalgia and Raynauds over three years ago and it sure

has been

a stuggle with my health since that initial diagnosis. I've been through it all,

from a pain

management doctor who told me that FMS is a " waste basket diagnosis " to EMG

which

showed bilateral carpal tunnel, ulnar tunnel and neuropathy this past year which

landed

me out of work for five months. Fortunately, I have a wonderful, supportive

husband as

well as a very kind and understanding rheumatologist.

Yesterday, she diagnosed me with Rheumatoid Arthritis. About two weeks ago, I

started

having pain in both wrists which I thought was a flare-up of carpal tunnel.

However, it

involved my thumbs at the joints and did not have the typical numbing sensation.

The

knuckles on both hands swelled to the point that I couldn't wear my wedding

ring. That

had never happened before. Within days, the morning stiffness was hours long and

my

knees could barely get me up the stairs to my office. Every night I would come

home and

sleep out of pain and exhaustion. One day, my husband was startled by the heat

emanating from my wrists. It was like they were on fire.

My doctor ordered all the standard bloodwork, but was of the opinion that my

symptoms

and her exam were sufficient enough for a diagnosis. She is also of the opinion

that

bloodwork doesn't make or break a case for RA. She put me on Prednisone for two

weeks

and then I'll return for follow-up discussion as to alternatives. I am

Vicoprofen for pain,

which is severe at this point.

I'm not shocked by the diagnosis because my father has RA rather badly and just

finished

a very successful course with Remicade. I'm still reading, reading, reading just

about

everything I can find about RA and am happy to have found this group.

If you could share just one piece of advice about someone just diagnosed with

this

disease, what would it be?

Many thanks,

Paige

Joy

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Visit Joy's Homepage and Reading Room!

http://jhoormann-ivil.tripod.com

Come see My Dog Salsa!

http://www.geocities.com/jhoorm01/Salsa.html

[Guest guest]

Joy, we've had this discussion before and have understandings of those of us

that keep taking Prednisone. I started taking it in 1990 and swore it to be

a real blessing. I still feel that way today even though I tried to get off

it, without success. A number of us have decided that it's better to take

the off chance of bad side-effects to get the relief we enjoy with it. I

take a steady dose of 5 mg twice a day, and with an unusually difficult

flare, I might take an extra 5 mg sometimes. I'm not going off it as long as

I have the choice, no matter what the doctors and nurses say. I know they

are supposed to encourage us to stop taking it, but they're not the ones

that have to suffer needlessly just because they want us to stop.

I'm having the same story with my Xanax. My GP doesn't like it, it's a

terrible medicine that hits hard and tapers off soon after, and he doesn't

like it. So he gave me another, Lorazepam, in it's place. I tried it for a

long time but it does nothing for me. At least with the Alprazolam (generic

Xanax) it relieves the tension caused when I'm hurting, and that's why I

take it. It does the job for me, so I'll keep on taking it when I need it.

You never know what a med will do to/for you until you try with an open

mind. You're still giving good advice about not getting hooked if possible,

but don't count it out before you try.

Dennis in Eastexas

" It's not Rocket Surgery "

Re: [ ] FMS patient just diagnosed with RA

>I would say to not get hooked on the prednisone. This happened to me and I

>have been trying to

> wean off it and it is horrible. It is great for a flair but I wish I

> would not have started taking it and staying

> on it like I did.

> Joy

>

> Paige <paigec38@...> wrote:

> Greetings:

>

> I was diagnosed with Fibromyalgia and Raynauds over three years ago and it

> sure has been

> a stuggle with my health since that initial diagnosis. I've been through

> it all, from a pain

> management doctor who told me that FMS is a " waste basket diagnosis " to

> EMG which

> showed bilateral carpal tunnel, ulnar tunnel and neuropathy this past year

> which landed

> me out of work for five months. Fortunately, I have a wonderful,

> supportive husband as

> well as a very kind and understanding rheumatologist.

>

> Yesterday, she diagnosed me with Rheumatoid Arthritis. About two weeks

> ago, I started

> having pain in both wrists which I thought was a flare-up of carpal

> tunnel. However, it

> involved my thumbs at the joints and did not have the typical numbing

> sensation. The

> knuckles on both hands swelled to the point that I couldn't wear my

> wedding ring. That

> had never happened before. Within days, the morning stiffness was hours

> long and my

> knees could barely get me up the stairs to my office. Every night I would

> come home and

> sleep out of pain and exhaustion. One day, my husband was startled by the

> heat

> emanating from my wrists. It was like they were on fire.

>

> My doctor ordered all the standard bloodwork, but was of the opinion that

> my symptoms

> and her exam were sufficient enough for a diagnosis. She is also of the

> opinion that

> bloodwork doesn't make or break a case for RA. She put me on Prednisone

> for two weeks

> and then I'll return for follow-up discussion as to alternatives. I am

> Vicoprofen for pain,

> which is severe at this point.

>

> I'm not shocked by the diagnosis because my father has RA rather badly and

> just finished

> a very successful course with Remicade. I'm still reading, reading,

> reading just about

> everything I can find about RA and am happy to have found this group.

>

> If you could share just one piece of advice about someone just diagnosed

> with this

> disease, what would it be?

>

> Many thanks,

>

> Paige

[Guest guest]

I just know that I have suffered weight gain and when I was on the higher doses

my blood

sugar went up. I agree it does great for the arthritis but at what cost to

other things

bone density, blood sugar etc.. I just wish I had been more informed on it

before I started

taking it. For those that can take without the bad side effects that is great.

And before

it is all over I may be back on it myself but I do want to try to get off it

for awhile at least.

With some meds you can just stop taking it but with this one you have to taper

off of it

and then worry about withdrawal problems.

betnden@... wrote:

Joy, we've had this discussion before and have understandings of those

of us

that keep taking Prednisone. I started taking it in 1990 and swore it to be

a real blessing. I still feel that way today even though I tried to get off

it, without success. A number of us have decided that it's better to take

the off chance of bad side-effects to get the relief we enjoy with it. I

take a steady dose of 5 mg twice a day, and with an unusually difficult

flare, I might take an extra 5 mg sometimes. I'm not going off it as long as

I have the choice, no matter what the doctors and nurses say. I know they

are supposed to encourage us to stop taking it, but they're not the ones

that have to suffer needlessly just because they want us to stop.

I'm having the same story with my Xanax. My GP doesn't like it, it's a

terrible medicine that hits hard and tapers off soon after, and he doesn't

like it. So he gave me another, Lorazepam, in it's place. I tried it for a

long time but it does nothing for me. At least with the Alprazolam (generic

Xanax) it relieves the tension caused when I'm hurting, and that's why I

take it. It does the job for me, so I'll keep on taking it when I need it.

You never know what a med will do to/for you until you try with an open

mind. You're still giving good advice about not getting hooked if possible,

but don't count it out before you try.

Dennis in Eastexas

" It's not Rocket Surgery "

Re: [ ] FMS patient just diagnosed with RA

>I would say to not get hooked on the prednisone. This happened to me and I

>have been trying to

> wean off it and it is horrible. It is great for a flair but I wish I

> would not have started taking it and staying

> on it like I did.

> Joy

>

> Paige <paigec38@...> wrote:

> Greetings:

>

> I was diagnosed with Fibromyalgia and Raynauds over three years ago and it

> sure has been

> a stuggle with my health since that initial diagnosis. I've been through

> it all, from a pain

> management doctor who told me that FMS is a " waste basket diagnosis " to

> EMG which

> showed bilateral carpal tunnel, ulnar tunnel and neuropathy this past year

> which landed

> me out of work for five months. Fortunately, I have a wonderful,

> supportive husband as

> well as a very kind and understanding rheumatologist.

>

> Yesterday, she diagnosed me with Rheumatoid Arthritis. About two weeks

> ago, I started

> having pain in both wrists which I thought was a flare-up of carpal

> tunnel. However, it

> involved my thumbs at the joints and did not have the typical numbing

> sensation. The

> knuckles on both hands swelled to the point that I couldn't wear my

> wedding ring. That

> had never happened before. Within days, the morning stiffness was hours

> long and my

> knees could barely get me up the stairs to my office. Every night I would

> come home and

> sleep out of pain and exhaustion. One day, my husband was startled by the

> heat

> emanating from my wrists. It was like they were on fire.

>

> My doctor ordered all the standard bloodwork, but was of the opinion that

> my symptoms

> and her exam were sufficient enough for a diagnosis. She is also of the

> opinion that

> bloodwork doesn't make or break a case for RA. She put me on Prednisone

> for two weeks

> and then I'll return for follow-up discussion as to alternatives. I am

> Vicoprofen for pain,

> which is severe at this point.

>

> I'm not shocked by the diagnosis because my father has RA rather badly and

> just finished

> a very successful course with Remicade. I'm still reading, reading,

> reading just about

> everything I can find about RA and am happy to have found this group.

>

> If you could share just one piece of advice about someone just diagnosed

> with this

> disease, what would it be?

>

> Many thanks,

>

> Paige

Joy

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Visit Joy's Homepage and Reading Room!

http://jhoormann-ivil.tripod.com

Come see My Dog Salsa!

http://www.geocities.com/jhoorm01/Salsa.html

[Guest guest]

Paige,

You asked for 1 but I have to give you 2!

1. learn to pace yourself in everything you do. One of

the other posters put it so well-

.....work..rest...work...rest...work...rest. this is

the way to make it thru the day. Even if you are just

running errands...take the time to stop and get a

drink or something to eat and just rest for

awhile...don't try to go at high speed...you will

pardon the expression " poop out " much faster without

the rest periods and your pain will increase as well.

2. Do NOT be afraid of getting addicted to pain meds.

There is a great difference in being addicted and

being physically dependent. Addiction means you use

them more than what the Dr orders in order to get the

" high " .

Physically dependent means that you take them as

directed and your body depends on them to relieve the

pain so that you can be the best you can be under

these extreme curcumstances. You can get off the meds

with the help of your Dr by tapering the doses if you

feel that you don't need them anymore. but RA, Lupus

and Fibro are forever...they get progressivly worse

not better so odds are you are going to be on pain

meds of some sort for the rest of your life. Its a

choice....to be in so much pain that you can't get out

of bed...or to be physically dependent on pain meds

and be able to go about your day in a modified manner.

there are always choices to be made...to go here and

skip going there so you don't wear yoursef out...to

plan for rest periods, and to take whatever meds help

you thru your day and night..I take MSContin (a long

term morphine) as none of the other pain meds worked

for me..they would work for bout 1 1/2 hours...and

then I was in ungodly pain for 5 hours until I could

take another pill. WIth the MSC I can go about my

day...carefully and getting rest periods where I sit

and put my feet up for 1/2 hour and a nap in the

afternoon ... my pain is dulled, never gone...but

dulled enough that I feel like I have a life and that

I can contribute to my family and friends. To me it is

worth it. You have to find out if it is worth it to

you. I also take meds to sleep at night. After weeks

and months of not sleeping more than 2 hours at a time

I gave in and now take trazadone to help me sleep...I

was a walking Zombie without sleep...and thats a

stressor whih makes the pain worse and can bring on a

flare...so think about that too!

I have only had this for 2 years and it feels like 40!

I find the best advice here, and can bounce ideas off

the other members and see what they think, ask what

their experience with a med has been, or just whine if

I have had a bad day. It is a great place to come to

get help and to help others...you may be picking our

brains now...but soon you will be offering advice to a

newcommer ..and it is a good feeling to be able to

help someone or to just listen to someone when they

have had a bad day or experience! Hang in there. Come

here often.Ask questions, and email me offsite if you

ever need a shoulder to cry on or someone to talk to! ...jenna

When you lose a loved one, you gain an angel whos' name you know !

________________________________________________________________________________\

____

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[Guest guest]

Sorry about your diagnoses, Paige. Welcome to the group!

Keep reading, reading, reading.

Once you and your rheumatologist are fairly sure it's RA, begin at least one

DMARD.

Have a plan for discontinuing the prednisone very soon so that you don't

become dependent on it from the start.

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] FMS patient just diagnosed with RA

> Greetings:

>

> I was diagnosed with Fibromyalgia and Raynauds over three years ago and it

> sure has been

> a stuggle with my health since that initial diagnosis. I've been through

> it all, from a pain

> management doctor who told me that FMS is a " waste basket diagnosis " to

> EMG which

> showed bilateral carpal tunnel, ulnar tunnel and neuropathy this past year

> which landed

> me out of work for five months. Fortunately, I have a wonderful,

> supportive husband as

> well as a very kind and understanding rheumatologist.

>

> Yesterday, she diagnosed me with Rheumatoid Arthritis. About two weeks

> ago, I started

> having pain in both wrists which I thought was a flare-up of carpal

> tunnel. However, it

> involved my thumbs at the joints and did not have the typical numbing

> sensation. The

> knuckles on both hands swelled to the point that I couldn't wear my

> wedding ring. That

> had never happened before. Within days, the morning stiffness was hours

> long and my

> knees could barely get me up the stairs to my office. Every night I would

> come home and

> sleep out of pain and exhaustion. One day, my husband was startled by the

> heat

> emanating from my wrists. It was like they were on fire.

>

> My doctor ordered all the standard bloodwork, but was of the opinion that

> my symptoms

> and her exam were sufficient enough for a diagnosis. She is also of the

> opinion that

> bloodwork doesn't make or break a case for RA. She put me on Prednisone

> for two weeks

> and then I'll return for follow-up discussion as to alternatives. I am

> Vicoprofen for pain,

> which is severe at this point.

>

> I'm not shocked by the diagnosis because my father has RA rather badly and

> just finished

> a very successful course with Remicade. I'm still reading, reading,

> reading just about

> everything I can find about RA and am happy to have found this group.

>

> If you could share just one piece of advice about someone just diagnosed

> with this

> disease, what would it be?

>

> Many thanks,

>

> Paige

[Guest guest]

Just one piece of advice....well, I suppose, Paige, that it would have to be

this....NEVER GIVE UP! NEVER SURRENDER! We have to alter our daily lives

around the disease, but that does NOT mean we give up living. I'm truly sorry

to hear of your diagnoses, but at least you now know what you are facing.

Educate yourself and your loved ones as much as possible and don't be afraid to

ask for help when you need it. This group is a tremendous help...people here

are supportive, willing to share and many are veritable fountains of information

and wisdom. Don't hesitate to reach out here.

May God bless you richly today.

in Texas

<Matsumura_Clan@...> wrote:

Sorry about your diagnoses, Paige. Welcome to the group!

Keep reading, reading, reading.

Once you and your rheumatologist are fairly sure it's RA, begin at least one

DMARD.

Have a plan for discontinuing the prednisone very soon so that you don't

become dependent on it from the start.

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] FMS patient just diagnosed with RA

> Greetings:

>

> I was diagnosed with Fibromyalgia and Raynauds over three years ago and it

> sure has been

> a stuggle with my health since that initial diagnosis. I've been through

> it all, from a pain

> management doctor who told me that FMS is a " waste basket diagnosis " to

> EMG which

> showed bilateral carpal tunnel, ulnar tunnel and neuropathy this past year

> which landed

> me out of work for five months. Fortunately, I have a wonderful,

> supportive husband as

> well as a very kind and understanding rheumatologist.

>

> Yesterday, she diagnosed me with Rheumatoid Arthritis. About two weeks

> ago, I started

> having pain in both wrists which I thought was a flare-up of carpal

> tunnel. However, it

> involved my thumbs at the joints and did not have the typical numbing

> sensation. The

> knuckles on both hands swelled to the point that I couldn't wear my

> wedding ring. That

> had never happened before. Within days, the morning stiffness was hours

> long and my

> knees could barely get me up the stairs to my office. Every night I would

> come home and

> sleep out of pain and exhaustion. One day, my husband was startled by the

> heat

> emanating from my wrists. It was like they were on fire.

>

> My doctor ordered all the standard bloodwork, but was of the opinion that

> my symptoms

> and her exam were sufficient enough for a diagnosis. She is also of the

> opinion that

> bloodwork doesn't make or break a case for RA. She put me on Prednisone

> for two weeks

> and then I'll return for follow-up discussion as to alternatives. I am

> Vicoprofen for pain,

> which is severe at this point.

>

> I'm not shocked by the diagnosis because my father has RA rather badly and

> just finished

> a very successful course with Remicade. I'm still reading, reading,

> reading just about

> everything I can find about RA and am happy to have found this group.

>

> If you could share just one piece of advice about someone just diagnosed

> with this

> disease, what would it be?

>

> Many thanks,

>

> Paige

[Guest guest]

Many thanks to all who responded and shared their advice about RA. How

wonderful to

have found such a supportive group. I'm looking forward to participating.