Re: Always in pain?

[Guest guest]

Hi Leanne and Leonie:

    I was deeply saddened to read your letters.  I find pain to be so wearing,

and you get so sick with suffering each and every day.  All I can recommend, is

to tell your Rheumy the extent of your pain and suffering.  When I first got

diag. with RA, I was so swollen, pain in my entire body, day and night.  It was

a nightmare.  I have a wonderful Rheumy, and through trial and error, I have the

perfect " cocktail " for me.  It took a long time to get where I am today.  I take

the max. dose of all my RA meds.  I take Pred., Sulfasalizine, Placquenil, MTX. 

I have never been off the Pred. as the pain and swelling returns very quickly. 

It has been over 5 years now, and my flares are shorter, and longer time in

between flares. 

     When I do flare, I take heavy duty pain meds. to help me get through it.  I

had to try several types of pain meds., before I found the best for me.  When I

am flaring, my feet and ankles are the absolute worst.  I can't stand on them,

nor can I walk good.  On those days, I am bed bound, and even with my pain

meds., I would like to chop my feet off.  That is how bad it is for me.  In the

beginning, I was in bed more than I was out of bed.

     It is hard not to get depressed with all that going on each and every day. 

I think you both need to really talk with your Rheumy about what you are dealing

with every day.  Your Rheumy can find what works well for you for pain.  Because

of all the depression, perhaps you both need to find a good Dr. to help you with

that.  It is best to get treatment as soon as possible.  You both have so much

going on at the same time, and they are both very hard to deal with.

      The road traveled with RA, is really hard, as it changes our lives so

much.  I have learned to pace myself, rest as much as possible, and just take

one day at a time.  That is all I can handle.  Yes, RA has changed my life, but

I had to learn how to deal with it, and try to lead a good life.  I have had to

give up a lot, but I am very grateful for what I can do.

I moved to Florida from Cape Cod because my RA was so bad, I was almost in a

wheel chair.  I have always been a " do-er " , and did lots of things each and

every day.  Well, I had to change the things I did, and the way I did them.  My

Rheumy stressed get lots of rest, and pace yourself.  It took  me a long time to

do this.  Please take care of yourselves, and try to not get too depressed.  I

know it is hard to do, but try to think positive thoughts.  I love to folk art

paint, and did so many hours a day.  I can't do that length of time now, but I

can do 1 hour at a time.  I am just happy I can paint, even if it is for a short

time.  Try to think of all you can do, not what you can't do.  It does make a

difference.  I just take one day at a time.  If I am in a bad flare, I just go

minute by minute.  This is how I deal with my RA.  I hate the disease, but I

love life more.

     Wishing you both a more peaceful life, and many pain free days ahead.  I

hope this letter helps the both of you.  Please remember, I do care.

 

Love and hugs,

Barbara

From: mumpup2000 <leoniecent@...>

Subject: [ ] Always in pain?

Date: Sunday, March 22, 2009, 4:38 AM

Hi all, Well actually, I want to know the same thing as Leanne.... I know there

are varying degrees of relief that people achieve on the meds, but when does the

pain end ? I guess this group is for those who are struggling to some extent and

need support. Maybe there are some out there who get total pain relief on meds

and thats why we never hear from them ? Lucky them !

I don't want to be around for long either, if I have to live the way I am now. I

took the meds and I feel worse than if I hadn't. I hope it gets better. Am I the

only one feeling alone and hopeless ? I keep praying to God that he would let me

be anyone else on this planet except me. What a totally desolating disease to

get !! Worse than cancer in my opinion... at least with cancer you either die or

get better.

I hope I can somehow grow stronger from all this, and not fall into a sad and

sorry, useless heap of (whatever;). Sorry about the whinge.

Leonie

>

> Hi all.

>

> Is there such a thing as being pain-free with this disease? I'm not quite 45

years old, and seriously, if this is what it's going to be like for the rest of

my days, I don't want to have too many of them.

>

> I hurt all the time. When I wake up, when I go to bed, in the middle of the

night and all day long. Sometimes it's worse than others, but I hurt when I move

and I hurt when I don't move.

>

> Currently I'm taking prednisone (down to 4mg) and Plaquenil (400mg) and

Tylenol arthritis as needed. I pretty much can't sleep without two of the

Tylenol, and I try not to take it during the day. I can't take

anti-inflammatories because I also have kidney disease. I am also an

insulin-dependent Type II diabetic, thanks in part to prednisone.

>

> I see my rheumy for the third time this coming Friday. What do I tell him?

What do I ask him? I can't go on like this forever. I'm miserable, I'm not

myself, and I'm sure my family doesn't like me much either.

>

> Thanks for listening.

>

> Leanne

>

[Guest guest]

Leanne,

Would your insurance pay for one of the expensive biologics? Enbrel

keeps me pain free, along with arthritis-strength Tylenol. I do have

some pain from osteoarthritis, but none from RA in a very long time. I

am so grateful for Enbrel!

I also have type 2 diabetes, not from prednisone. I'm sure the

prednisone is detrimental to your diabetes, so it would be good if you

could taper off of it. Since you're down to 4mg, perhaps that's what

you're doing.

It sounds as though you definitely need another DMARD added. Perhaps

methotrexate would work for you. Be sure to complain to your rheumy

and let him know just how much pain you're suffering. If he won't

listen to your concerns, get a second opinion.

Sue

On Mar 22, 2009, at 12:18 AM, Leanne wrote:

> Hi all.

>

> Is there such a thing as being pain-free with this disease? I'm not

> quite 45 years old, and seriously, if this is what it's going to be

> like for the rest of my days, I don't want to have too many of them.

>

> I hurt all the time. When I wake up, when I go to bed, in the

> middle of the night and all day long. Sometimes it's worse than

> others, but I hurt when I move and I hurt when I don't move.

>

> Currently I'm taking prednisone (down to 4mg) and Plaquenil (400mg)

> and Tylenol arthritis as needed. I pretty much can't sleep without

> two of the Tylenol, and I try not to take it during the day. I

> can't take anti-inflammatories because I also have kidney disease.

> I am also an insulin-dependent Type II diabetic, thanks in part to

> prednisone.

>

> I see my rheumy for the third time this coming Friday. What do I

> tell him? What do I ask him? I can't go on like this forever. I'm

> miserable, I'm not myself, and I'm sure my family doesn't like me

> much either.

>

> Thanks for listening.

>

> Leanne

>

>

>

> ------------------------------------

>

>

[Guest guest]

Leonie, as I just wrote in another email, I do get total pain relief

from Enbrel. I hang around to offer hope to others and to encourage

them to demand good, aggressive treatment from their rheumys. I've

been where you are now, and I know what it feels like. I was

depressed, too, because constant pain causes depression. I remember

when I couldn't make a fist, squeeze out a wash cloth, or even cut my

own meat. Now I have absolutely no swelling and can do all of those

things without any trouble.

Remember that the squeaky wheel gets the grease. Be assertive with

your doctor!

Sue

On Mar 22, 2009, at 7:38 AM, mumpup2000 wrote:

> Hi all, Well actually, I want to know the same thing as Leanne....

> I know there are varying degrees of relief that people achieve on

> the meds, but when does the pain end ? I guess this group is for

> those who are struggling to some extent and need support. Maybe

> there are some out there who get total pain relief on meds and thats

> why we never hear from them ? Lucky them !

>

> I don't want to be around for long either, if I have to live the way

> I am now. I took the meds and I feel worse than if I hadn't. I hope

> it gets better. Am I the only one feeling alone and hopeless ? I

> keep praying to God that he would let me be anyone else on this

> planet except me. What a totally desolating disease to get !!

> Worse than cancer in my opinion... at least with cancer you either

> die or get better.

>

> I hope I can somehow grow stronger from all this, and not fall into

> a sad and sorry, useless heap of (whatever;). Sorry about the whinge.

> Leonie

>

[Guest guest]

Very well said. I was at the same point you all were actually had a nervous

breakdown in the process

took them a long time to get my diagnosis and even know they go back and

forth between psoriatic

arthritis and ra.. I also have complex regional pain syndrome of which is

highest on the pain scale. I thought

my life was over. But thank god i got the help i needed and finally got

some relief. Went from walker and cane to now being able to somewhat function.

dont give up there is something out there to help you.

Jolene

In a message dated 3/22/2009 8:14:27 P.M. Eastern Daylight Time,

sarahledsom@... writes:

Hi Leanne and Lonie,

I found both your letters really upsetting as I and a hell of a lot of

others know exactly that pain. Where you just feel all you want is an end to it

all. I'm 12 years down the line and have been like you for the past 6 years.

The one thing I do know, is that you have got to have something to fight

for, it was my 5 year old grandaughter who gave and still gives me the will to

go on.

The other ladies are right, in that you have got to get through to your

rheumatologist that what you are experiencing is totally unacceptible and

against

your human rights.

No one in this day and age should need to suffer like this.

You might be lucky and the next drug you are put on might just do it for

you. If not then you keep on until the one for you arrives and you have a

quality to your life again.

I've just started on Enbrel, had my 2nd injection on friday with some bad

side effects, but I will do whatever it takes and won't stop til I'm back on my

feet.

Because I didn't scream and shout til recently, I've been left with bad

deformities, which could have been prevented. Now, I don't take no for an

answer.

You need to be strong and never lose faith. And never ever think you are on

your own. I have found that out in the past few days when I came on board.

There are lots of good people here who will pick you up when you are down, as

we have this disease in common.

I send you my love and my prayers that you will soon be in a much better

place.

From: Leanne <_oldredmom@..._ (mailto:oldredmom@...) >

Subject: [ ] Always in pain?

_ @groRA-SUPP_ (mailto: )

Date: Sunday, 22 March, 2009, 4:18 AM

Hi all.

Is there such a thing as being pain-free with this disease? I'm not quite 45

years old, and seriously, if this is what it's going to be like for the rest

of my days, I don't want to have too many of them.

I hurt all the time. When I wake up, when I go to bed, in the middle of the

night and all day long. Sometimes it's worse than others, but I hurt when I

move and I hurt when I don't move.

Currently I'm taking prednisone (down to 4mg) and Plaquenil (400mg) and

Tylenol arthritis as needed. I pretty much can't sleep without two of the

Tylenol, and I try not to take it during the day. I can't take

anti-inflammatories

because I also have kidney disease. I am also an insulin-dependent Type II

diabetic, thanks in part to prednisone.

I see my rheumy for the third time this coming Friday. What do I tell him?

What do I ask him? I can't go on like this forever. I'm miserable, I'm not

myself, and I'm sure my family doesn't like me much either.

Thanks for listening.

Leanne

[Non-text portions of this message have been removed]

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[Guest guest]

Hi Leanne and Lonie,

I found both your letters really upsetting as I and a hell of a lot of others

know exactly that pain. Where you just feel all you want is an end to it all.

I'm 12 years down the line and have been like you for the past 6 years.

The one thing I do know, is that you have got to have something to fight for, it

was my 5 year old grandaughter who gave and still gives me the will to go on.

 

The other ladies are right, in that you have got to get through to your

rheumatologist that what you are experiencing is totally unacceptible and

against your human rights.

No one in this day and age should need to suffer like this.

You might be lucky and the next drug you are put on might just do it for you. If

not then you keep on until the one for you arrives and you have a quality to

your life again.

I've just started on Enbrel, had my 2nd injection on friday with some bad side

effects, but I will do whatever it takes and won't stop til I'm back on my feet.

Because I didn't scream and shout til recently, I've been left with bad

deformities, which could have been prevented. Now, I don't take no for an

answer.

 

You need to be strong and never lose faith. And never ever think you are on your

own. I have found that out in the past few days when I came on board. There are

lots of good people here who will pick you up when you are down, as we have this

disease in common.

 

I send you my love and my prayers that you will soon be in a much better place.

From: Leanne <oldredmom@...>

Subject: [ ] Always in pain?

Date: Sunday, 22 March, 2009, 4:18 AM

Hi all.

Is there such a thing as being pain-free with this disease? I'm not quite 45

years old, and seriously, if this is what it's going to be like for the rest of

my days, I don't want to have too many of them.

I hurt all the time. When I wake up, when I go to bed, in the middle of the

night and all day long. Sometimes it's worse than others, but I hurt when I move

and I hurt when I don't move.

Currently I'm taking prednisone (down to 4mg) and Plaquenil (400mg) and Tylenol

arthritis as needed. I pretty much can't sleep without two of the Tylenol, and I

try not to take it during the day. I can't take anti-inflammatories because I

also have kidney disease. I am also an insulin-dependent Type II diabetic,

thanks in part to prednisone.

I see my rheumy for the third time this coming Friday. What do I tell him? What

do I ask him? I can't go on like this forever. I'm miserable, I'm not myself,

and I'm sure my family doesn't like me much either.

Thanks for listening.

Leanne

[Guest guest]

Leanne and Leonie and ,

I've been reading these last few groups of messages and realizing...WOW, when

have I not said these exact same things?!?!

I have been dealing with RA now for 16 years and I turn 35 this April. I've been

thru almost all the DMARD drugs and am currently on Methatrexate and Rituxan

infusions. Well my miracle drug is no longer working. The Rituxan has lost it's

effect only after 2 months instead of 6 and now I'm supplementing with 20mg of

Prednisone. You can imagine how pissed off I was when the stiffness began and it

wouldn't go away. I felt it starting and it was like a bad horror film. You

know, when you know it's coming and there isn't a damn thing you can do about

it. Well, I called my Rheumy and we're meeting on Wednesday. All we can do is

take it day to day. It's a roller coaster ride. There are good days and there

are bad. The primary concern is to have an open communication and understanding

with your Rheumy. If the connection isn't there...you need to find a new doctor!

Trust me...in 16 years of this crap...it hasn't been all pain. But, I'm not

gonna lie! It's not all roses either! DAY TO DAY! They will find a way to make

it comfortable. Then...when the comfort is no longer there, you change the

cocktail up a bit and there is a new comfort level. Unfortunately, I haven't

been able to find a miracle to be able to live pain free without a prescription.

Trust, I hate being a walking pharmacy, but...we do what we have to do!

Take each day as it comes, greet each day, new with a smile! :-)

Peace & Healthy Blessings~ Kris

[Guest guest]

Dear Leanne,

I feel compelled to respond to your post regarding always in pain. I am also in

my 40's and have lived with RA for 11 years. I hope that the information I

share with you will be helpful to you and others.

I have tried every medication there is for this disease. DMARDS, biologics (all

of them), NSAIDS, even tried gold injections which actually did work for a

while. After exhausting the traditional methods of disease management, my

Rheumatologist suggested seeing a naturopathic physician which I did. Having

tried naturopathic medicine in the past (which didn't work) I was reluctant but

gave it a try.

He put me on the eat right for your type diet which is a diet based on your

blood type. It is an elimination diet, so it's hard, but I have experienced a

level of pain relief on it. I had lost weight in the past on the Atkins diet

which is similar to the type of diet I am on now so it's not all that new to me.

I went from barely being able to walk upon waking to walking the 7 mile loop in

my town - in just a matter of a few weeks. Energy levels are back, aches, pain

and inflammation have subsided to the point where I can actually do the things

that I enjoy again.

As we all know, we are all different, and treatment plans that work for one

person may not work for another. I pray that you find what works best for you

so that you can enjoy a more fulfilling quality of life. Never give up. I was

where you are once. Stay strong and know that you are not alone.

The book, again, is 4 Blood Types, 4 Diets - Eat Right 4 Your Type by J.

D'Adamo.

Good luck to you.

[Guest guest]

I have been in chronic pain for over 20 years. On eof the first things I

learned years ago was that the only way to get my doctor's attention and work

with me was if I took the bull by the horns!

Prior to every visit, I write up a sheet. It begins with an alphabetical list

of the Prescriptions I am taking, what amount, dose, and what the medication is

for.

The second part lists any OTCs.

Third is any allergies to drugs.

Forth is any questions/problems I want to discuss. In this part, under each

problem, I mark the level of pain it is causing from 1-10. That is VERY

important! If you just say you hurt, they will hear it but not know how bad you

are suffering.

I begin this list the day AFTER my last visit to the doctor. By doing so, I

don't leave the doctor's office after the next visit and feel I've forgotten to

discuss something with him and it has created a place where my doctor and I are

co-healers in my illnesses.

I have Fibro, RA, my spine is falling apart in the neck and low back area with

not only disc but vertebra out of place, I have migraines, ashtma, you name it,

it is on the list. My head can tell you when the barometer is moving far sooner

than the weather man!

I am on some of the same drugs as I've read, Placqunil, MTX, but in addition I

wear a Fentanyl patch and get a Rx for Percocet for " breakthrough " pain. I also

get nerve blocks in my spine every 3 months for 3 months, which, while do calm

some of that pain, make me feel like an angry pitbull with AIDS at times

(because the steroids act up the hormones).

There are days that I don't/can't get out of bed, and times I too wonder what my

life's purpose is now. However, on the days that I can get out of bed, I do

whatever I can to make the most of it. I paint, go outside and pull a couple

weeds from my garden, anything to help me keep myself grounded and looking

toward the good in my life. I can't help think that there are reasons for each

and everything we are given to deal with. While I don't know why we are given

this, I know that the moments that I refuse to let it get me are far more worth

it than the times I get down. I too place my mind on the things I can do rather

than those I can no longer do.

I also sit quietly each day for about 20 minutes and close my eyes and see my

body whole, well, just as it was created. Those moments are worth my breath.

I will keep you all in my prayers and see you also in my silent moments whole,

well and just as perfect as the day you were created.

With many hugs to all,

Judy

land

>

> Hi all.

>

> Is there such a thing as being pain-free with this disease? I'm not quite 45

years old, and seriously, if this is what it's going to be like for the rest of

my days, I don't want to have too many of them.

>

> I hurt all the time. When I wake up, when I go to bed, in the middle of the

night and all day long. Sometimes it's worse than others, but I hurt when I

move and I hurt when I don't move.

>

> Currently I'm taking prednisone (down to 4mg) and Plaquenil (400mg) and

Tylenol arthritis as needed. I pretty much can't sleep without two of the

Tylenol, and I try not to take it during the day. I can't take

anti-inflammatories because I also have kidney disease. I am also an

insulin-dependent Type II diabetic, thanks in part to prednisone.

>

> I see my rheumy for the third time this coming Friday. What do I tell him?

What do I ask him? I can't go on like this forever. I'm miserable, I'm not

myself, and I'm sure my family doesn't like me much either.

>

> Thanks for listening.

>

> Leanne

>