Re: so much pain and nothing that helps

[Guest guest]

Hi there,

I agree, let those dishes pile up for a few days and take care of yourself.

Sometimes it causes more anxiety trying to explain to friends and family

what we feel like because it doesn't always show. I also have a handicap

placard, and last week, my Dr. just made it permanent. I don't look

" handicapped "

at all. However, my hips hurt so much at times that I need time to " uncoil " ,

or when my fingers are so cold, they get stuck around the steering wheel, I

don't have to tell you all that, we all have our reasons and they are valid,

but it's the same old thing, just like an old job I had to get the elderly

and the young disabled to make nice with each other. If you can't see the

disability, you don't deserve " the sympathy " or any benefits that go along with

it. Period. That is not me saying that, that is the attitude that we are

dealing with. We are medicated so much to prevent the progession of this

disease so that we don't have the stereotypical looks of RA. But we still

hurt.

Sometimes as I hang my placard, I feel like I need to have a little index

card explaining why I have my card.....but then, I just get out and go, if

someone wants to say something to me, let them. I 'll always respond in kind

and

tell them. I've never had that experience though. There are days that I

won't use it if I'm feeling pretty good. I did that one time though, and got

into a long Walmart line...now, I can't stand for more than 20 min...by the

time

I got out, I just about crawled to my car that was parked far away! I know,

not the brightest bulb on the Christmas tree, that's one of the reasons I

have my card.

Please take care of yourself, know that you are part of a large family here

that totally understands you, and share our stories with your family.

Hopefully they'll listen and come to understand. Do the things you need to do

in

small stages. Don't worry about how fast things get done. Life is too short

to sweat the small stuff.

I hope you are feeling better soon. Hugs and smiles to you.

Merry Christmas!!!

Heidi in Mass.

In a message dated 12/10/2008 8:52:14 A.M. Eastern Standard Time,

dorv@... writes:

I agree that RA is not recognized for its severity. Most times, people say,

" Oh, I have arthritis in my knee too. " I try to explain that their

arthritis in their knee is NOT RA, but it goes right over their heads.

I also have a handicap parking permit. My problem is that I need to be able

to open my door fully in order to get in or out of the car. If I park in a

regular space close to another car, it's extremely difficult for me. If I

can find a space on the end of a row of cars, I will park there instead of

take up a handicap spot..unless it's raining (LOL)

I get tons of dirty looks...I will usually limp walking away from the car!!

Once at the library, I forgot to hang the permit on the rear view mirror.

When I came back to the car, there was a note under the windshield wiper

that read something like, " You fuc*ing piece of sh*t.... " When I read that

much, I crumpled the note up and_ threw it in a nearby trash can. I got in

the car and immediately hung the permit on the mirror. I was hoping that

the person who left the note was watching and realized I had just neglected

to hang the permit. Maybe next time, they won't be so quick to write that

type of note.

Maybe you should stay in bed for a few days and let all the dishes pile up!

Hang in there!

_____

From:

_ (http://www.flmnetwork.com/) _ @groRA-SUPP_

(mailto: ) _ [mailto:_ (http://www.flmnetwork.com/)

_ @groRA-SUPP_ (mailto: ) _] On

Behalf Of lornadrury50

Sent: Wednesday, December 10, 2008 4:25 AM

_ (http://www.flmnetwork.com/) _ @groRA-SUPP_

(mailto: ) _

Subject: [ ] so much pain and nothing that helps

It seems to me that nobody understands the pain that people with R.A.

go through.I really think the people around me think I am putting

on.and wish that they can have my pain for just 1 hour. I am sure they

will then start helping me around the house .Help means just taking

their dirty glasses to the kitchen after drinking soda instead of just

leaving it all over the place.If only they knew how sore it is to walk

up and down all day cleaning up after them. When I complain they tell

me to leave it for later and the later it gets the more there is to do.

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

_ (http://www.flmnetwork.com/)

**************Make your life easier with all your friends, email, and

favorite sites in one place. Try it now.

(http://www.aol.com/?optin=new-dp & icid=aolcom40vanity & ncid=emlcntaolcom00000010)

[Guest guest]

I agree that RA is not recognized for its severity. Most times, people say,

" Oh, I have arthritis in my knee too. " I try to explain that their

arthritis in their knee is NOT RA, but it goes right over their heads.

I also have a handicap parking permit. My problem is that I need to be able

to open my door fully in order to get in or out of the car. If I park in a

regular space close to another car, it's extremely difficult for me. If I

can find a space on the end of a row of cars, I will park there instead of

take up a handicap spot..unless it's raining (LOL)

I get tons of dirty looks...I will usually limp walking away from the car!!

Once at the library, I forgot to hang the permit on the rear view mirror.

When I came back to the car, there was a note under the windshield wiper

that read something like, " You fuc*ing piece of sh*t.... " When I read that

much, I crumpled the note up and threw it in a nearby trash can. I got in

the car and immediately hung the permit on the mirror. I was hoping that

the person who left the note was watching and realized I had just neglected

to hang the permit. Maybe next time, they won't be so quick to write that

type of note.

Maybe you should stay in bed for a few days and let all the dishes pile up!

Hang in there!

_____

From: [mailto: ] On

Behalf Of lornadrury50

Sent: Wednesday, December 10, 2008 4:25 AM

Subject: [ ] so much pain and nothing that helps

It seems to me that nobody understands the pain that people with R.A.

go through.I really think the people around me think I am putting

on.and wish that they can have my pain for just 1 hour. I am sure they

will then start helping me around the house .Help means just taking

their dirty glasses to the kitchen after drinking soda instead of just

leaving it all over the place.If only they knew how sore it is to walk

up and down all day cleaning up after them. When I complain they tell

me to leave it for later and the later it gets the more there is to do.

[Guest guest]

Please don't take this as dismissive, but maybe you are taking too

many meds for your RA? I watched that MTX youtube video that someone

on this list offered and saw what a person with RA for one year

looked like and I don't look like that at all. I like to think it is

because I haven't yet taken any meds for my RA, but did start on a

regimen of non-iron vitamins, glucosamine/chondroitin, calcium, and

fish oil from my diagnosis over a year ago now, and also changed my

diet so that I don't eat any tomatoes, potatoes or peppers.

Would you consider cutting back on the meds and trying a change of

diet? I truly believe there is something to it.

Brad

--- In , " lornadrury50 " <lornakobus@...>

wrote:

>

> It seems to me that nobody understands the pain that people with

R.A.

> go through.I really think the people around me think I am putting

> on.and wish that they can have my pain for just 1 hour. I am sure

they

> will then start helping me around the house .Help means just taking

> their dirty glasses to the kitchen after drinking soda instead of

just

> leaving it all over the place.If only they knew how sore it is to

walk

> up and down all day cleaning up after them. When I complain they

tell

> me to leave it for later and the later it gets the more there is to

do.

> I am currently on 6x mtx per week,1x plasoquine per day,1x folic

acid

> per day,1x coxflam per day and 1x tramecel per day but so far

since I

> found out a year ago about the RA nothing has helped.I feel how my

life

> is leaving me and there is nothing I can do about it. Sorry to

complain

> such a lot and thanks for listning.

> Can someone tell me how to handle the pain in my hands,

> elbows.knees,ankles and feet.

> I do have a disabled disk but feel very guily when I park on

disabed

> parking as people look at you with a ? in their eyes saying you can

> walk so why park on disable parking.

> If only they knew.Is it normal to feel guilty I am 51 yrs old

>

[Guest guest]

Lorna (I'm assuming), it's hard to convince most people because 'we look the

same as before'. I was laid off my job of 20 years because " everyone has

arthritis " . I even had trouble with my wife for a while. I just couldn't do

things I used to, and she couldn't understand it even after a lot of

talking. Finally she understood and started telling me how bad I was feeling

just from the first couple of words I spoke. Since I didn't care what others

thought, I was happy because the important people in my life did understand.

It was even hard for me to get used to, and I still have to remind myself

after 20 years that I can't do what I could.

Try to let yourself feel comfortable in your 'new' body where you can't do

and won't be able to do as you did. And you need to ignore your friends and

family that are making you feel uncomfortable until you accept your new

self. That's the hardest thing to do, but necessary (for me anyhow) to gain

progress in your own life. You might also look into an anti-depressant, it

sounds like you may need them.

Dennis in eastexas

On Wed, Dec 10, 2008 at 3:24 AM, lornadrury50 <lornakobus@...>wrote:

> It seems to me that nobody understands the pain that people with R.A.

> go through.I really think the people around me think I am putting

> on.and wish that they can have my pain for just 1 hour. I am sure they

> will then start helping me around the house .Help means just taking

> their dirty glasses to the kitchen after drinking soda instead of just

> leaving it all over the place.If only they knew how sore it is to walk

> up and down all day cleaning up after them. When I complain they tell

> me to leave it for later and the later it gets the more there is to do.

> I am currently on 6x mtx per week,1x plasoquine per day,1x folic acid

> per day,1x coxflam per day and 1x tramecel per day but so far since I

> found out a year ago about the RA nothing has helped.I feel how my life

> is leaving me and there is nothing I can do about it. Sorry to complain

> such a lot and thanks for listning.

> Can someone tell me how to handle the pain in my hands,

> elbows.knees,ankles and feet.

> I do have a disabled disk but feel very guily when I park on disabed

> parking as people look at you with a ? in their eyes saying you can

> walk so why park on disable parking.

> If only they knew.Is it normal to feel guilty I am 51 yrs old

>

>

[Guest guest]

Dorothy, it sounds like my older sister may have written that note, it's the

language she uses and the sight she sees. Her daughter finally died of a

drug overdose after fighting Fibro and her mother for a lot of years. Sis

still refuses to see that the Fibro was real and reminds me (when she's

talking to me) that " it's all in your head " . She also says the same about

her daughter. She won't learn, and unfortunately, there are a lot like that.

Walk with your head up and ignore the poor souls that can't learn.

Dennis in eastexas

On Wed, Dec 10, 2008 at 7:51 AM, Dorothy <dorv@...> wrote:

> I agree that RA is not recognized for its severity. Most times, people

> say,

> " Oh, I have arthritis in my knee too. " I try to explain that their

> arthritis in their knee is NOT RA, but it goes right over their heads.

>

> I also have a handicap parking permit. My problem is that I need to be able

> to open my door fully in order to get in or out of the car. If I park in a

> regular space close to another car, it's extremely difficult for me. If I

> can find a space on the end of a row of cars, I will park there instead of

> take up a handicap spot..unless it's raining (LOL)

>

> I get tons of dirty looks...I will usually limp walking away from the car!!

> Once at the library, I forgot to hang the permit on the rear view mirror.

> When I came back to the car, there was a note under the windshield wiper

> that read something like, " You fuc*ing piece of sh*t.... " When I read that

> much, I crumpled the note up and threw it in a nearby trash can. I got in

> the car and immediately hung the permit on the mirror. I was hoping that

> the person who left the note was watching and realized I had just neglected

> to hang the permit. Maybe next time, they won't be so quick to write that

> type of note.

>

> Maybe you should stay in bed for a few days and let all the dishes pile up!

> Hang in there!

>

>

[Guest guest]

Brad,

Everyone with RA looks different. You can have a positive RA Factor and not have

active RA. I am very happy that you have found relief through dietary changes.

Unfortunately for some of us, this disease hits hard and fast and well... we

need medical intervention to get pain relief and to reduce the inflammation in

our bodies before we are willing to " experiment " with natural remedies.

w] ~]ss Kami ss] ~]w

[ ] Re: so much pain and nothing that helps

Please don't take this as dismissive, but maybe you are taking too

many meds for your RA? I watched that MTX youtube video that someone

on this list offered and saw what a person with RA for one year

looked like and I don't look like that at all. I like to think it is

because I haven't yet taken any meds for my RA, but did start on a

regimen of non-iron vitamins, glucosamine/chondroitin, calcium, and

fish oil from my diagnosis over a year ago now, and also changed my

diet so that I don't eat any tomatoes, potatoes or peppers.

Would you consider cutting back on the meds and trying a change of

diet? I truly believe there is something to it.

Brad

.

[Guest guest]

KAMI, AMEN TO THAT EVERYONE DOES LOOK  A TAD DIFFERENT W/RA. RIGHT NOW MY RA  IS

VERY ACTIVE & I FEEL LIKE DYING CUZ THE PAIN IS SOO AWEFUL... I TAKE SOO MANY

MEDS I DON'T KNOW IF I'M COMING OR GOING!LOL.

BUT IF THE MEDS HELP HAVE TO DO WHAT NEEDSTO B DONE....  HOPE U FEEL BETTER

SOON,GOD BLESS,MELYNDA

________________________________

From: ~ Kami ~ <kamilleon@...>

Sent: Wednesday, December 10, 2008 3:39:34 PM

Subject: Re: [ ] Re: so much pain and nothing that helps

Brad,

Everyone with RA looks different. You can have a positive RA Factor and not have

active RA.  I am very happy that you have found relief through dietary changes.

Unfortunately for some of us, this disease hits hard and fast and well... we

need medical intervention to get pain relief and to reduce the inflammation in

our bodies before we are willing to " experiment " with natural remedies.

w] ~]ss Kami  ss] ~]w   

  [ ] Re: so much pain and nothing that helps

  Please don't take this as dismissive, but maybe you are taking too

  many meds for your RA? I watched that MTX youtube video that someone

  on this list offered and saw what a person with RA for one year

  looked like and I don't look like that at all. I like to think it is

  because I haven't yet taken any meds for my RA, but did start on a

  regimen of non-iron vitamins, glucosamine/chondroitin, calcium, and

  fish oil from my diagnosis over a year ago now, and also changed my

  diet so that I don't eat any tomatoes, potatoes or peppers.

  Would you consider cutting back on the meds and trying a change of

  diet? I truly believe there is something to it.

  Brad

  .

 

[Guest guest]

Lorna, stop cleaning up after them! Leave the glasses where they leave

them. When they run out of glasses, they might go around the house and

pick up some. You have to let them know that you are not their maid.

Even if you didn't have Ra, they would not have the right to demand

maid service from you.

Sue

On Wednesday, December 10, 2008, at 04:24 AM, lornadrury50 wrote:

> It seems to me that nobody understands the pain that people with R.A.

> go through.I really think the people around me think I am putting

> on.and wish that they can have my pain for just 1 hour. I am sure they

> will then start helping me around the house .Help means just taking

> their dirty glasses to the kitchen after drinking soda instead of just

> leaving it all over the place.

[Guest guest]

Brad,

I'm glad that your regimen is working for you, and I hope that it

continues to work. But have you considered that others might have a

more severe case of RA than you have and need to take the meds that

they take? And if they're not working, maybe they need to take even

more?

If you were in as much pain as I was when my RA started, you'd be

begging for meds.

Sue

On Wednesday, December 10, 2008, at 01:08 PM, Brad Berg wrote:

> Please don't take this as dismissive, but maybe you are taking too

> many meds for your RA? I watched that MTX youtube video that someone

> on this list offered and saw what a person with RA for one year

> looked like and I don't look like that at all. I like to think it is

> because I haven't yet taken any meds for my RA, but did start on a

> regimen of non-iron vitamins, glucosamine/chondroitin, calcium, and

> fish oil from my diagnosis over a year ago now, and also changed my

> diet so that I don't eat any tomatoes, potatoes or peppers.

> Would you consider cutting back on the meds and trying a change of

> diet? I truly believe there is something to it.

[Guest guest]

I know how you feel. RA can be complex amd for someone who doesn't

have it, don't know how it feels. I would help educate them on RA,

what it does etc. I would not rely on what some of the RA medication

commericials seem to spew out. (It makes people who are on whatever

medication seem like they are full of life and do everyhting like

they used to. The new one from Enbral made me mad, because the chic

said " I knew my rheumatoid arthritis can be painfull; I didn't know

it can cause joint damage " . Are you kidding me!??!)

I went in to cash my SSDI check and this chic looked at me and

said. " Aren't you a little young to be getting SSI? " I told her it

was SSDI. She looked at me and said, " You don't look disabled, what

do youi have so I can get it!?!? " I didn't even cash my check, I

walked out because I knew if I told her it was because of RA...she

would think that is just OA and start talking shit.

You are in pain, pace yourself and you are not a maid...just a little

education can go a long way. You have a handicapped card, use it if

you have too, you need it and it doesn't matter what someone looking

at you thinks. Don't beat yourself up because of RA. You did not

ask be diagnosed with RA. Talk to yout rheumy, find a good

combination of medications that work for you. Just because it works

for someone else, doesn't mean it will work for you.

What helps me with the pain, (besides pain meds that I take) is

therapy. It is helping me accept who I am today and not try to be

the person I was pre-RA. I have said on here and I will say it

again. Pain is a feeling, it's who you are.

>

> Lorna (I'm assuming), it's hard to convince most people because 'we

look the

> same as before'. I was laid off my job of 20 years

because " everyone has

> arthritis " . I even had trouble with my wife for a while. I just

couldn't do

> things I used to, and she couldn't understand it even after a lot of

> talking. Finally she understood and started telling me how bad I

was feeling

> just from the first couple of words I spoke. Since I didn't care

what others

> thought, I was happy because the important people in my life did

understand.

> It was even hard for me to get used to, and I still have to remind

myself

> after 20 years that I can't do what I could.

>

> Try to let yourself feel comfortable in your 'new' body where you

can't do

> and won't be able to do as you did. And you need to ignore your

friends and

> family that are making you feel uncomfortable until you accept your

new

> self. That's the hardest thing to do, but necessary (for me anyhow)

to gain

> progress in your own life. You might also look into an anti-

depressant, it

> sounds like you may need them.

>

> Dennis in eastexas

>

> On Wed, Dec 10, 2008 at 3:24 AM, lornadrury50 <lornakobus@...>wrote:

>

> > It seems to me that nobody understands the pain that people

with R.A.

> > go through.I really think the people around me think I am putting

> > on.and wish that they can have my pain for just 1 hour. I am sure

they

> > will then start helping me around the house .Help means just

taking

> > their dirty glasses to the kitchen after drinking soda instead of

just

> > leaving it all over the place.If only they knew how sore it is to

walk

> > up and down all day cleaning up after them. When I complain they

tell

> > me to leave it for later and the later it gets the more there is

to do.

> > I am currently on 6x mtx per week,1x plasoquine per day,1x folic

acid

> > per day,1x coxflam per day and 1x tramecel per day but so far

since I

> > found out a year ago about the RA nothing has helped.I feel how

my life

> > is leaving me and there is nothing I can do about it. Sorry to

complain

> > such a lot and thanks for listning.

> > Can someone tell me how to handle the pain in my hands,

> > elbows.knees,ankles and feet.

> > I do have a disabled disk but feel very guily when I park on

disabed

> > parking as people look at you with a ? in their eyes saying you

can

> > walk so why park on disable parking.

> > If only they knew.Is it normal to feel guilty I am 51 yrs old

> >

> >

>

>

>

[Guest guest]

I know how you feel. RA can be complex amd for someone who doesn't

have it, don't know how it feels. I would help educate them on RA,

what it does etc. I would not rely on what some of the RA medication

commericials seem to spew out. (It makes people who are on whatever

medication seem like they are full of life and do everyhting like

they used to. The new one from Enbral made me mad, because the chic

said " I knew my rheumatoid arthritis can be painfull; I didn't know

it can cause joint damage " . Are you kidding me!??!)

I went in to cash my SSDI check and this chic looked at me and

said. " Aren't you a little young to be getting SSI? " I told her it

was SSDI. She looked at me and said, " You don't look disabled, what

do youi have so I can get it!?!? " I didn't even cash my check, I

walked out because I knew if I told her it was because of RA...she

would think that is just OA and start talking shit.

You are in pain, pace yourself and you are not a maid...just a little

education can go a long way. You have a handicapped card, use it if

you have too, you need it and it doesn't matter what someone looking

at you thinks. Don't beat yourself up because of RA. You did not

ask be diagnosed with RA. Talk to yout rheumy, find a good

combination of medications that work for you. Just because it works

for someone else, doesn't mean it will work for you.

What helps me with the pain, (besides pain meds that I take) is

therapy. It is helping me accept who I am today and not try to be

the person I was pre-RA. I have said on here and I will say it

again. Pain is a feeling, it's who you are.

>

> Lorna (I'm assuming), it's hard to convince most people because 'we

look the

> same as before'. I was laid off my job of 20 years

because " everyone has

> arthritis " . I even had trouble with my wife for a while. I just

couldn't do

> things I used to, and she couldn't understand it even after a lot of

> talking. Finally she understood and started telling me how bad I

was feeling

> just from the first couple of words I spoke. Since I didn't care

what others

> thought, I was happy because the important people in my life did

understand.

> It was even hard for me to get used to, and I still have to remind

myself

> after 20 years that I can't do what I could.

>

> Try to let yourself feel comfortable in your 'new' body where you

can't do

> and won't be able to do as you did. And you need to ignore your

friends and

> family that are making you feel uncomfortable until you accept your

new

> self. That's the hardest thing to do, but necessary (for me anyhow)

to gain

> progress in your own life. You might also look into an anti-

depressant, it

> sounds like you may need them.

>

> Dennis in eastexas

>

> On Wed, Dec 10, 2008 at 3:24 AM, lornadrury50 <lornakobus@...>wrote:

>

> > It seems to me that nobody understands the pain that people

with R.A.

> > go through.I really think the people around me think I am putting

> > on.and wish that they can have my pain for just 1 hour. I am sure

they

> > will then start helping me around the house .Help means just

taking

> > their dirty glasses to the kitchen after drinking soda instead of

just

> > leaving it all over the place.If only they knew how sore it is to

walk

> > up and down all day cleaning up after them. When I complain they

tell

> > me to leave it for later and the later it gets the more there is

to do.

> > I am currently on 6x mtx per week,1x plasoquine per day,1x folic

acid

> > per day,1x coxflam per day and 1x tramecel per day but so far

since I

> > found out a year ago about the RA nothing has helped.I feel how

my life

> > is leaving me and there is nothing I can do about it. Sorry to

complain

> > such a lot and thanks for listning.

> > Can someone tell me how to handle the pain in my hands,

> > elbows.knees,ankles and feet.

> > I do have a disabled disk but feel very guily when I park on

disabed

> > parking as people look at you with a ? in their eyes saying you

can

> > walk so why park on disable parking.

> > If only they knew.Is it normal to feel guilty I am 51 yrs old

> >

> >

>

>

>

[Guest guest]

Lornadury

If people want to know why you use disabled parking, just tell em its

none of their #%$@ business.I am 52 and feel like I am 92 on most days. I

know that some of the people here have shown them the responses on the line

here. My DH understands but there are still times when he asks me why I was

laying around all day?I usually just shake my head and go back to bed. That

is rare however. It took awhile for him to understand but for the most part

he is really good now. Sit your family down and let them read a bit about

the pain and disability RA causes.Don't pick up after them and see what the

do when there are no clean glasses for them to use. Harsh I know but with

what you have going on there is no reason for them not to understand

Heidibug

On Wed, Dec 10, 2008 at 4:24 AM, lornadrury50 <lornakobus@...>wrote:

> It seems to me that nobody understands the pain that people with R.A.

> go through.I really think the people around me think I am putting

> on.and wish that they can have my pain for just 1 hour. I am sure they

> will then start helping me around the house .Help means just taking

> their dirty glasses to the kitchen after drinking soda instead of just

> leaving it all over the place.If only they knew how sore it is to walk

> up and down all day cleaning up after them. When I complain they tell

> me to leave it for later and the later it gets the more there is to do.

> I am currently on 6x mtx per week,1x plasoquine per day,1x folic acid

> per day,1x coxflam per day and 1x tramecel per day but so far since I

> found out a year ago about the RA nothing has helped.I feel how my life

> is leaving me and there is nothing I can do about it. Sorry to complain

> such a lot and thanks for listning.

> Can someone tell me how to handle the pain in my hands,

> elbows.knees,ankles and feet.

> I do have a disabled disk but feel very guily when I park on disabed

> parking as people look at you with a ? in their eyes saying you can

> walk so why park on disable parking.

> If only they knew.Is it normal to feel guilty I am 51 yrs old

>

>

>

[Guest guest]

Brad,

Until as recently as the 90s, the range of DMARDs for RA that there is

today wasn't available. The result - pain, suffering, deformity, loss

of employment, loss of function, the need for joint replacements, the

inability to do normal activities, and premature death for a large

portion of RA patients.

Those who have RA and skip DMARDs in the beginning of the disease

course are taking a very big risk. This is especially true for people

with markers of more severe disease - high RF and/or anti-CCP, early

erosions and/or deformities, rheumatoid nodules, and disease which is

very active.

There is a wealth of evidence which demonstrates that there is a

" window of opportunity " during which the disease can be treated with

DMARDs and successfully brought under control. Wait, and not only to

you risk permanent damage, but you risk letting your immune system

become so deranged that it will be very difficult to control from that

point forward.

Obviously, not everyone has the same level of disease, but

rheumatologists prescribe DMARDs early for a very good reason. The

risks of untreated or undertreated RA are too great.

There have also been a number of studies which have demonstrated that

DMARDs can be used intensively in the beginning and then scaled back

after the disease is under control (induction therapy). For some, the

DMARDs may even be withdrawn completely.

It's a fine idea to examine and improve one's diet and lifestyle, but,

for most RA patients, those measures alone are not enough.

Not an MD

On Wed, Dec 10, 2008 at 12:08 PM, Brad Berg <blueworld_of_fire@...> wrote:

> Please don't take this as dismissive, but maybe you are taking too

> many meds for your RA? I watched that MTX youtube video that someone

> on this list offered and saw what a person with RA for one year

> looked like and I don't look like that at all. I like to think it is

> because I haven't yet taken any meds for my RA, but did start on a

> regimen of non-iron vitamins, glucosamine/chondroitin, calcium, and

> fish oil from my diagnosis over a year ago now, and also changed my

> diet so that I don't eat any tomatoes, potatoes or peppers.

> Would you consider cutting back on the meds and trying a change of

> diet? I truly believe there is something to it.

>

> Brad

[Guest guest]

Hi Lorna - yes, I do believe its normal to feel guilty about using the

handicapped parking spaces - BUT IT IS NECESSARY and I tend to give

people an " I dare you to say something " look anymore rather than

feeling guilty about what I need to do to save my steps. As far as

your family members who refuse to pick up after themselves, STOP

picking up after them! You have repeatedly asked, they have repeatedly

blown you off. Stand up for yourself. You didn't ask for this illness,

you are doing the best you can and there is no reason why you can't

get the help you need and deserve. If you have to stay in your room to

avoid having to look at their mess until they get the message, then

take the time to rest and enjoy some down time and peace and quiet.

There are a couple of things that I have found very helpful for

myself. One is this " Invisible Illness " site:

http://invisibleillness.wordpress.com/

The other is The Spoon Theory:

http://butyoudontlooksick.com/the_spoon_theory/

I hope your family will wake up and realize that you need help. I pray

that they will find the compassion in their hearts to recognize that

you just can't do it all anymore. I know how you're feeling. I've been

there/done that. All I can say is don't give up and stand up for

yourself.

As far as the pain you are still in, call your Rheumy. If there is

anything that I have learned through all of this is that everyone is

different and there are so many different combinations of medicines

out there that can help you. So, don't wait until your next

appointment, call them and tell them that the meds you are taking are

not helping. They work for YOU.

Best of luck to you. Keep us posted. We care......Doreen

>

> It seems to me that nobody understands the pain that people with

> R.A. go through.I really think the people around me think I am

> putting on and wish that they can have my pain for just 1 hour. I

> am sure they will then start helping me around the house .Help

> means just taking their dirty glasses to the kitchen after drinking

> soda instead of just leaving it all over the place.If only they

> knew how sore it is to walk up and down all day cleaning up after

> them. When I complain they tell me to leave it for later and the

> later it gets the more there is to do. I am currently on 6x mtx per

> week,1x plasoquine per day,1x folic acid per day,1x coxflam per day

> and 1x tramecel per day but so far since I found out a year ago

> about the RA nothing has helped.I feel how my life is leaving me

> and there is nothing I can do about it. Sorry to complain such a

> lot and thanks for listning. Can someone tell me how to handle the

> pain in my hands, elbows.knees,ankles and feet.

>

> I do have a disabled disk but feel very guily when I park on

> disabed parking as people look at you with a ? in their eyes saying

> you can walk so why park on disable parking. If only they knew.Is

> it normal to feel guilty I am 51 yrs old

>