Re: Help me if you can understand!!!!

[Guest guest]

You can definitely become used to the pain. However, it could mean you are

feeling better. That happens when you find the right combo. But they can also

stop working at some point as well.

My question is why don't you want to tell your Dr. that you feel better? They

may reduce your dosage and you will either stay the same or get worse and re-up

the medication.

What about your other symptoms. You mentioned being tired. Has the fatigue

gotten better as well?

Also, just because you are better now doesn't mean two weeks from now it won't

come back with a vengence! However, I would not worry about telling your doctor

that you DO feel better! I would be EXTREMELY happy if I could tell my doctor I

feel great!

Shandi

[ ] Help me if you can understand!!!!

Hi guys,

Sorry long time no posting but you all know with modern life there is

no time for anything else but work.

I'm just having a strange problem here...i think I'm getting used to

the pain. I can't really remember how I was feeling before having

RA?!!!!!! I don't know how to describe this but I think when you live

in pain for 6 months you forgot about being in good shape.

My problem is that when the doctor asks me if I'm feeling better I

don't know what to say??!!! Seriously guys I think I adopt my self

with the pain and I don't know in what scale I must feel that I'm

getting better????

Maybe because you're not allowed to show how tired you are in work or

around friends and family so you act like nothing is wrong with you.

My question is: Does any one of you feel any better with medication??

And by better I mean no pain at all (No stiffness, No fatigue, No

depression..)

I am now on Methotrexate (20 mg) and Celebrex.

Another thing I have noticed..i sometime feel confused or lost (for

example: I went to buy sandwiches and for seconds I felt like I don't

know where am I or what am I suppose to do now) or when I am talking

to people I take a lot of time to remember what I want to say or what

was the word I wanted to say or how to say what I want.

Please if any one experienced something like that, I would appreciate

it if you tell me what's going on.

Thanks Guys and Happy New Year,

Marwa

[Guest guest]

Marwa, when someone asks me how I'm feeling, I usually respond with, " I'm

doing ok but think I'll get over it " . It confuses some and usually gets a

laugh or two.

I think you're realizing that the meds and pain are doing this to you. I

have some of the same things happen to me. Your pain levels change with each

hour or less, so it's hard to give an accurate answer. I feel much better

with the meds I'm taking now, but still in pain with lots of fatigue, and

I'm not afraid to show it or say it. 16-17 years of it gives me the right to

think and say what's the truth, not what others want to hear. Do what you've

got to do.

Dennis in Eastexas

" It's not Rocket Surgery "

[ ] Help me if you can understand!!!!

Hi guys,

Sorry long time no posting but you all know with modern life there is

no time for anything else but work.

I'm just having a strange problem here...i think I'm getting used to

the pain. I can't really remember how I was feeling before having

RA?!!!!!! I don't know how to describe this but I think when you live

in pain for 6 months you forgot about being in good shape.

My problem is that when the doctor asks me if I'm feeling better I

don't know what to say??!!! Seriously guys I think I adopt my self

with the pain and I don't know in what scale I must feel that I'm

getting better????

Maybe because you're not allowed to show how tired you are in work or

around friends and family so you act like nothing is wrong with you.

My question is: Does any one of you feel any better with medication??

And by better I mean no pain at all (No stiffness, No fatigue, No

depression..)

I am now on Methotrexate (20 mg) and Celebrex.

Another thing I have noticed..i sometime feel confused or lost (for

example: I went to buy sandwiches and for seconds I felt like I don't

know where am I or what am I suppose to do now) or when I am talking

to people I take a lot of time to remember what I want to say or what

was the word I wanted to say or how to say what I want.

Please if any one experienced something like that, I would appreciate

it if you tell me what's going on.

Thanks Guys and Happy New Year,

Marwa

[Guest guest]

when I was in my most severe pain, eventually it just took me over. I could not

even hold a conversation, I did not move at all. I did not knwow if I was

hungry or tired or awake or asleep, all I knew was pain.

When I got my new doc, he said he was gonna treat me aggresively and my pain

might go away. As odd as it sounds, THAT scared me. For a few years I had

coasted thru life, mostly bedridden, unable to move, unable to think, and I am

not quite sure just what I was scared about, maybe that I would not know how to

" be " ?

Well, LOL, truth is am also bipolar and the prednisone he gave me to " jump

start " me made me manic. I was giddy, euphoric, and VERY energetic! My kids

and husband kept teasing me and making fun of me but they clearly enjoyed me

being up and about. It took me several weeks to realize, wow, I am not having

PAIN.

It had been so many years, and I am surprised I had no pain and did not even

realize it right away! I guess I was simply far too busy enjoying?

I am not sure i even believed my new doc could really make my pain go away....

There is a drawback. WHere I was once organized and quick witted and fast

reflexes, I am now " slow " Yes, I have to very crefully think before I do or say

things. I cannot multitask, anymore. Heck the kids make fun of me cuz pre RA I

would do SO many things all at once and now I literally tell them no, I CANNOT

talk on the phone AND walk across the room at the same time, - and I mean that

quite literally.

I am not sure if some might be from meds. SOme might be from the " use it or

lose it " - after all I spent a few years as a vegetable- most literally. Maybe

some is related to disease process? It IS noticeable, even to me.

BUT I am so busy being happy, still.....

DId I get used to the pain? ABSOLUTELY! Can I remember before the pain? NO.

BUT then when it was gone, I did not even realize it. ANd if-when I stop to

take a breathe, I think I get a lil scraed I am dreaming and it is gonna come

RACING back?

My whole life changed so dramatically from the RA and the pain. I do not

remember my young sons toddlerhood. I gave up my career. I lost ALL my

relationships besides my husband and children.

Pain can take over. It can do all kinds of things. ANd yeah, it can make you

forget a LOT of things.

My husband has had irretractable pain for 16 years and .....yes, recently his

doc asked him where his pain was on a scale of 1-10 and my husband said Heck, I

don't know, if this was 10 years ago I would say 10, but.......I am used to it,

now and now it is a 20, but----1-10 does not relate to it anymore. cuz now I

know it can go to 100.

If I had ot adjusted to the pain, then this would be a 10, but since I am

adjusted to it, I guess on 1-10 scale, it is maybe 5?

Boy did he confuse his doctor!

- In , " sicsica2000 " <sicsica2000@...> wrote:

>

> Hi guys,

>

> Sorry long time no posting but you all know with modern life there is

> no time for anything else but work.

>

> I'm just having a strange problem here…….i think I'm getting used to

> the pain. I can't really remember how I was feeling before having

> RA?!!!!!! I don't know how to describe this but I think when you live

> in pain for 6 months you forgot about being in good shape.

>

> My problem is that when the doctor asks me if I'm feeling better I

> don't know what to say??!!! Seriously guys I think I adopt my self

> with the pain and I don't know in what scale I must feel that I'm

> getting better????

>

> Maybe because you're not allowed to show how tired you are in work or

> around friends and family so you act like nothing is wrong with you.

>

> My question is: Does any one of you feel any better with medication??

> And by better I mean no pain at all (No stiffness, No fatigue, No

> depression….)

>

> I am now on Methotrexate (20 mg) and Celebrex.

>

> Another thing I have noticed….i sometime feel confused or lost (for

> example: I went to buy sandwiches and for seconds I felt like I don't

> know where am I or what am I suppose to do now) or when I am talking

> to people I take a lot of time to remember what I want to say or what

> was the word I wanted to say or how to say what I want.

>

> Please if any one experienced something like that, I would appreciate

> it if you tell me what's going on.

>

> Thanks Guys and Happy New Year,

> Marwa

>

[Guest guest]

Yes, Marwa, I feel incredibly better with medication. I am on Enbrel,

and I can hardly tell that I have RA. I have very little pain or

stiffness, and absolutely no depression. I have the usual fatigue that

comes with increased age, I think, but I don't think that I have much

added fatigue from the RA. It's hard to tell, because I'm retired and

can stay in bed until around 10 or 10:30. I don't have to go out to

work.

Sue

On Sunday, December 31, 2006, at 11:28 AM, sicsica2000 wrote:

>

> My question is: Does any one of you feel any better with medication??

> And by better I mean no pain at all (No stiffness, No fatigue, No

> depression….)

>

[Guest guest]

Hi Marwa,

You wrote:

> I'm just having a strange problem here…….i think I'm getting used

to

> the pain. I can't really remember how I was feeling before having

> RA?!!!!!! I don't know how to describe this but I think when you

live

> in pain for 6 months you forgot about being in good shape.

>

> My problem is that when the doctor asks me if I'm feeling better I

> don't know what to say??!!! Seriously guys I think I adopt my self

> with the pain and I don't know in what scale I must feel that I'm

> getting better????

I understand what your saying completely. And the same thing does

happen to me. I have to ask, " Do you mean in comparison to before I

got RA or in comparison to the last time I saw you? " I think the

answer for me is that I DEFINITELY feel MUCH better than after I got

RA, but before I started treatment. However, I am certainly not

back to where I was pre-RA by any means.

Another aspect of that is that I was pretty fit and very physically

active before I got RA. I rode two horses every day, did all the

barnwork, gardening, walked with my husband most days, often hiked

on weekends. Now, after months of drug trials with varying degrees

of success, I am not fit. So when I try to do things I used to find

easy, I end up hurting afterwards. Then the question is, is it RA?

Or is it just muscle strain? Or, when it is clearly a joint issue,

like my knees or hips, is it lack of muscular support rather than

RA? When it's RA, they say you should back off, but if it's lack of

fitness and you back off, you'll NEVER get back to your previous

level of fitness. (we won't even touch the 25 lbs I've gained in the

last year)

> Maybe because you're not allowed to show how tired you are in work

or around friends and family so you act like nothing is wrong with

you.

I do think at some level " mind over matter " kicks in for me. I'm

sure that's why I can go through the day and pain is just sort

of " background noise " , but then, when I get into bed at night and

try to relax, it really hits me, and the pain becomes something I

can no longer ignore.

> My question is: Does any one of you feel any better with

medication??

> And by better I mean no pain at all (No stiffness, No fatigue, No

> depression….)

Well, there's a BIG difference between " any better " and COMPLETELY

better. I didn't get any appreciable improvement from Mtx alone,

though I already felt better than in the very beginning because I

was on prednisone. I felt pretty good while we added Arava, but we

never had time to see whether it would have worked without the

prednisone. I had to come off of it because my liver values went

too high. Then I switched to Enbrel and I felt the best I had felt

since getting RA for the first few days, but it wore off way before

it was time for the next shot.

Now I'm on Humira, and it is definitely working better than anything

else so far. There have actually been a FEW days when I really have

had NO pain, and close to normal energy level... days when I didn't

even feel the need to take a nap.<g> But it isn't all the time

yet.

On a day-to-day basis, I'm definitely doing better too. I am

weaning down my prednisone (about 1 mg per month/6weeks) and every

time I reduce the prednisone, I am pretty miserable for a couple of

weeks. It feels like RA, but I know that prednisone withdrawal can

mimic RA... it even has a name like " pseudo-rheumatism " or something

like that. And after a couple of weeks, I seem to go back to my

current " normal " , so I know it's the prednisone that's doing it.

(not that it's any more pleasant, but it gives me hope that when I'm

completely off the prednisone, it will stop!)

That said, most days I still don't have my pre-RA stamina. Some

days I HAVE to take a nap in the afternoon, and other days I can

push through, but I WISH I could take that nap.<g> It's rare that

I'm not in bed by 8:30 or if there isn't a compelling reason for me

to stay up later. As far as pain goes, I usually have at least a

couple of joints that are bothering me to some extent, though it's

much better than on earlier meds.

The fact that I have had those few days where NOTHING hurts, and the

fact that the doctor is still telling me that we WILL get there

keeps me hopeful. But I definitely understand how you feel... on

the days that things AREN'T so good, it's hard not to give up.

> Another thing I have noticed….i sometime feel confused or lost

(for

> example: I went to buy sandwiches and for seconds I felt like I

don't

> know where am I or what am I suppose to do now)

Yes. It has happened to me several times while driving. We live in

an area where a number of roads go through woodlands without

distingushing features, and that seems to be where it happens to me

most. I get almost a little panicky when it happens, because I

can't remember where I am or where I'm going. It passes in a few

seconds, but it's scary.

> or when I am talking

> to people I take a lot of time to remember what I want to say or

what

> was the word I wanted to say or how to say what I want.

This happens to me with frustrating frequency too. Particularly the

word finding problem. In the past, I have lectured frequently, and

I have put that on hiatus after my last speaking engagement.

Several times during the lecture I couldn't remember the word I

wanted. I'm not sure other whether people noticed... at least they

seemed to enjoy the talk. But it left me feeling very flustered.

I don't know why either of these things happen, but I know that they

weren't a problem pre-RA. I don't know if they are a side effect of

the drugs, (though not pain meds... these incidents have not

happened when I've had any pain meds in my system) the fatigue, or

something else about RA. But I don't like them.

I have heard others here talking about word-finding difficulties. I

haven't heard anyone else mention " getting lost " . I'm glad to hear

I'm not the only one. I'll be interested to hear whether some of

the people with longer experience with RA can shed any light on

either problem.

[Guest guest]

--- In , Marsha Hostetler

>> You are so right I was so much more active and before I found

out I had RA I found out I have Hashimoto's disease which can effect

your whole body too plus it makes you tired too. I finally think I

have things under control and I found out I have RA so this year has

been one thing after another. <<

I have Hashimoto's too. But I've had it all my adult life...

started when I was about 17. It's been well controlled the whole

time, so except for a lobectomy at one point for some suspicious

(but it turned out, benign) lumps, and the fact that my significant

goiter makes it hard to find ratcatchers that fit, ;-) it hasn't

been much of an issue in my life. I'd LOVE to get RA to that

point. I know it happens for some, because I run into people who

tell me they have RA, and that they are doing fine on (XXX) med.

> I know there will be a time I have to stop but it is like

breathing to me. I am happy my doctor is good about using

aggressive when it come to my medication.

Me too. I had a student die of a heart attack during a lesson many

years ago. It was traumatic for all of us left behind, but I've

always thought that's EXACTLY the way I want to go out.<g>

[Guest guest]

Hi Marwa,

I have been on enbrel, humira, mtx, and many

antiinflamms. The only thing that brings me some

relief is methylpred.

I am currently waitin on ins approval to start

rutixan.

I feel the same way-i have adjusted to being in

constant pain. I hate it.

I was so active before i got this-i have a 1 yr old

and chasing him around all day alone exhausts me. i

hate it.

I had an almost pain free day chrsitmas day and it

was like i didnt believe it was happening and i was

waiting for the pain, stiffness etc to return-which it

did.

I have very little energy, and dont feel like doing

anything. even meeting a friend for lunch is tiring.

everyone makes a big deal about the new year, and i

just think so what, just another year of pain and

fatigue.

Happy new year

Stacey

--- sicsica2000 <sicsica2000@...> wrote:

> Hi guys,

>

> Sorry long time no posting but you all know with

> modern life there is

> no time for anything else but work.

>

> I'm just having a strange problem here…….i think I'm

> getting used to

> the pain. I can't really remember how I was feeling

> before having

> RA?!!!!!! I don't know how to describe this but I

> think when you live

> in pain for 6 months you forgot about being in good

> shape.

>

> My problem is that when the doctor asks me if I'm

> feeling better I

> don't know what to say??!!! Seriously guys I think I

> adopt my self

> with the pain and I don't know in what scale I must

> feel that I'm

> getting better????

>

> Maybe because you're not allowed to show how tired

> you are in work or

> around friends and family so you act like nothing is

> wrong with you.

>

> My question is: Does any one of you feel any better

> with medication??

> And by better I mean no pain at all (No stiffness,

> No fatigue, No

> depression….)

>

> I am now on Methotrexate (20 mg) and Celebrex.

>

> Another thing I have noticed….i sometime feel

> confused or lost (for

> example: I went to buy sandwiches and for seconds I

> felt like I don't

> know where am I or what am I suppose to do now) or

> when I am talking

> to people I take a lot of time to remember what I

> want to say or what

> was the word I wanted to say or how to say what I

> want.

>

> Please if any one experienced something like that, I

> would appreciate

> it if you tell me what's going on.

>

> Thanks Guys and Happy New Year,

> Marwa

>

>

>

__________________________________________________

[Guest guest]

Happy New Year, Marwa:

I've only been diagnosed with RA for 2 months, but am wondering the same thing.

I return

next week to my rheumatologist and I'm certain she will ask if I've improved on

injectible

methotrexate 15 mg. I'm also on 5 mg of Prednisone daily. Have I improved?

Honestly, I

don't know. I'm not aching daily in my elbows, wrists and hands as I was prior

to

diagnosis. Morning stiffness comes and goes and if I " overuse " my hands, I have

terrible

pain.

Lately, my back has been awful, symptomatic of the fibromyalgia pain that I have

suffered

from for the past three years. Did one trigger the other? Probably.

Also, I get terrible headaches the day after my methotrexate injection.

One thing that disturbs me greatly is that in the past three months, I have

noticeable

finger disfigurement. On both hands, my index and middle fingers are doing that

ulnar

drift and both pinkies are very crooked. It seems to have happened so quickly,

I don't

know what to make of it.

I'm sorry if I have more questions than answers. I just wanted you to know that

you're not

alone in wondering.

Paige

[Guest guest]

Marwa,

The pain has been daily for the last four years. I really thought I

would get over it, or it would get some what better. I believe we

tend to tolerate it, what else can we do? For me, after awhile

everyone around me is tired of hearing it. They don't come out, and

say it, but I know. So, I just don't say much to them, just keep it

to myself, or tell my online friends.

When I go to the doctor, I feel like I'm complaining to much. I'm

sure he sees patients much worse then me. I'm not on RA meds right

now, but my pain meds really don't work anymore. I am scared to tell

my doc though, because I'm afraid he'll take me off them, and give me

nothing. The way docs are taking meds away from patients, it scares

me, so I just live with a LOT of pain. I have memory loss very badly

now. I've heard it could be from the pain, or could be the meds. I

am on Neurontin at 1800mg too, so that could be a part of mine. I

hope the meds help you, I don't want to sound so negative. Not

everyone is the same,......Hugs, Tawny

[Guest guest]

I can understand, I go through pain every day some worse that others. I do

get depressed when the pain is really bad and I have a good cry. I have

tried 2 medications one I was alergic too and the other one is not covered by

my

medical anymore. So my Dr. needs to try another one. So right now I just

take Advil or Advil P.M. I am also on medication for depression.