Re: Question on pain

[Guest guest]

I personally lie low on my most painful days and on my better days I putter when

I can, but rest in between and try not to overdo it so that I do not go into a

major flare.  You really should be on something stronger for your pain.  It

takes awhile to find a doctor that understands the kind of pain you are in and

to give you proper pain management, but once you do it is wonderful.  My doctor

wanted me to be able to function and not just lie in bed all the time because I

was in so much pain so hence the pain medication to help me function at least at

a mild level.  I will never be the same as I was, but at least I can move around

some.  I do use a wheelchair though for any big outings with lots of walking

like a mall because my feet kill me as well.  Good luck.  Beware of people who

do not understand that rheumatoid arthritis is much different than regular

arthritis.  I get that a lot and find it very frustrating. 

[Guest guest]

,

In my experience with RA, I have good days and really bad days. I have made the

mistake on my good days to do as much as possible physically and I pay for it

dearly the next day or so. Try on the good days to do a little, but listen to

your body. Your body will let you know if your over exerting yourself. On the

bad days when you hurt like hell and moving is just not going to happen, watch a

good movie, listen to the radio, read a book. I have found for some reason that

if I am propped up a bit in bed, I do sleep better even with the pain. Good luck

to you!!

Heidi in Denver

________________________________

From: Terzo <sarah5775@...>

Sent: Mon, March 14, 2011 1:56:56 PM

Subject: [ ] Question on pain

hi. My pain has been really bad for the past week or so. The worst it's

ever been.my feet hurt so much that when I walk, it's like walking on

knives. It's so painful to walk that I try to avoid walking as much as

possible. This is the worst pain ever been in my entire life. I think it

may be partly because I didn't take my one medication for two weeks due to a

problem with insurance, not that I was doing very well even before I stop

taking it. I am on Sulfasalazine, Clonequinil, and the one I haven't been

taking is Arava. I finally got my refill and took it yesterday and today,

but no change so far. I have to have a serious talk with my doctor about

the level of pain on having and the problems I'm having. I've been under

treatment for six months but I feel just as bad as I did the day when I was

diagnosed -- no, I feel much worse.

My question is -- on days like today, I like to just lie in bed. Turn on

the radio lie down and try not to move. My question is, does this make it

hurt more in the long run or less? Should I be forcing myself to walk

around a little bit? Or should I be staying as still as possible. My dad

says I have to move around or it will be worse, but he doesn't know anything

about arthritis. I'm wondering what you guys have experienced. Is it

better to just lie flat and do as little as possible, or is it better to try

to do your daily activities as much as you can? Please give me whatever

feedback you can, I'm trying very hard to cope with this extremely painful

time.

[Guest guest]

I am seeing my rheumatologist tomorrow. I need to tell him about the pain

I've been feeling, and how bad it is. In the past, he really hasn't

listened to me. I posted about this before -- I don't know if anyone

remembers. He keeps telling my father I am in remission even though the

pain continues to get worse and worse. A friend of mine recommended that I

keep the pain log -- writing down each day the things I can't do because of

the pain. She says that if I tell the doctor what I can and cannot do in

terms of function, that will be more effective than just telling him that

I'm in pain. I used my Dragon NaturallySpeaking software -- which I'm using

now -- to write the list. This is the software were you speak in to a

microphone and it types for you. I'm hoping that my mom can print out the

log. If not, I will have to try to write it out longhand but I'm hoping to

avoid this because my hands are very painful. Does anyone have any ideas of

what to tell the doctor or how to approach this whole thing? How do I make

him understand what a hard time I'm having. And are there any important

questions I should ask him that I haven't thought of? I would be very

grateful for any advice.

Previously I wrote:

>

> hi. My pain has been really bad for the past week or so. The worst it's

> ever been.my feet hurt so much that when I walk, it's like walking on

> knives. It's so painful to walk that I try to avoid walking as much as

> possible. This is the worst pain ever been in my entire life. I think it

> may be partly because I didn't take my one medication for two weeks due to

> a

> problem with insurance, not that I was doing very well even before I stop

> taking it. I am on Sulfasalazine, Clonequinil, and the one I haven't been

> taking is Arava. I finally got my refill and took it yesterday and today,

> but no change so far. I have to have a serious talk with my doctor about

> the level of pain on having and the problems I'm having. I've been under

> treatment for six months but I feel just as bad as I did the day when I was

> diagnosed -- no, I feel much worse.

>

> My question is -- on days like today, I like to just lie in bed. Turn on

> the radio lie down and try not to move. My question is, does this make it

> hurt more in the long run or less? Should I be forcing myself to walk

> around a little bit? Or should I be staying as still as possible. My dad

> says I have to move around or it will be worse, but he doesn't know

> anything

> about arthritis. I'm wondering what you guys have experienced. Is it

> better to just lie flat and do as little as possible, or is it better to

> try

> to do your daily activities as much as you can? Please give me whatever

> feedback you can, I'm trying very hard to cope with this extremely painful

> time.

>

>

>

>

[Guest guest]

I dont want this to come out the wrong way but how old are you. I mean are you

over 18. If you are the doctor has no business talking to your father about your

condition. It is illegal and breaks all the codes of privacy between patient and

doctor. I think if you can get it printed out just hand it to him and ask him to

read it. If you cant print it maybe someone at his office will give you the

email address and you can send it that way. Possibly before your appointment so

when you go in the doctor already knows how you are feeling. If you are over 18

speak to him yourself. He needs to respect you as an adult. If you have a friend

who is not easily swayed by the medical profession have them go with you and

help you explain. If that doesnt work find a new doctor. You deserve to be heard

and to be helped not to have your dad railroaded by a doctor that does not

believe you. Geez I hope that was not harsh. I dont mean it to be.

Carol

[Guest guest]

I'm over 18, but I'm very dependent on my family because I have a history of

problems with mental issues. As a young adult I was in and out of mental

hospitals. I am a lot better now, but they tend to see me as a very needy

person and they tend to take over. My dad is convinced that I'm not really

in pain and the doctor also does nothing to dissaude him from that. My

father also pressures me to go walking with him, telling me that I have to

exercise and that will make the arthritis better. I keep trying to tell him

it doesn't work that way. My parents don't believe a thing I tell them,

either about how I feel or about what I have read online. They refuse to do

any research themselves. I have told my dad I do not want him in with the

doctor and myself, but then my mom and dad gang up on me and my dad says

that if he is taking me to the appointment he should be there. And I have

always given in, even though I do not want him there. The problem is, I am

so dependent on him. If he doesn't drive me to the doctors, I cannot go.

There is no one else I can get a ride with. If I have to go to the store to

get groceries, I have to ask my parents. If I need a medication at the

pharmacy, they have to get it. I can't risk getting them too upset with me

or I'll be with nothing to eat and no medication. That is the problem- but I

don't have the money to get a car of my own and there is no public

transportation nearby. I want to move to a place where I can find

transportation, but I don't have the money to hire a van or people to help

me move. And I can't get anywhere- I can't go looking for apartments without

someone to drive me. I have no friends in the area and no choice but to

depend on my parents for everything. I know that as a 35 year old woman it

is ridiculous that I need to constantly care what my parents think, but

there doesn't seem to be any way out of it.

I think I'm going to put my foot down tomorrow and not let my dad in to the

appointment. But I just hope the doctor finally begins listening to me.

On Tue, Mar 15, 2011 at 5:58 PM, em <IM4BUCS2000@...> wrote:

>

>

>

> I dont want this to come out the wrong way but how old are you. I mean are

> you over 18. If you are the doctor has no business talking to your father

> about your condition. It is illegal and breaks all the codes of privacy

> between patient and doctor. I think if you can get it printed out just hand

> it to him and ask him to read it. If you cant print it maybe someone at his

> office will give you the email address and you can send it that way.

> Possibly before your appointment so when you go in the doctor already knows

> how you are feeling. If you are over 18 speak to him yourself. He needs to

> respect you as an adult. If you have a friend who is not easily swayed by

> the medical profession have them go with you and help you explain. If that

> doesnt work find a new doctor. You deserve to be heard and to be helped not

> to have your dad railroaded by a doctor that does not believe you. Geez I

> hope that was not harsh. I dont mean it to be.

>

> Carol

>

>

>

[Guest guest]

I think a MH caseworker could help you to gain your independence. Do you have

any mental health agemcies in your area? 

Best wishes. Ladeyangll

[Guest guest]

Is there possibly another Dr you could see that might be a little more

understanding. You poor thing you are between a rock and a hard place . I

understand you dont want to upset your parents. You just need someone thats on

your side to explain things to Dad. Let me know how things go with the doc.

Carol

Re: [ ] Question on pain

I'm over 18, but I'm very dependent on my family because I have a history of

problems with mental issues. As a young adult I was in and out of mental

hospitals. I am a lot better now, but they tend to see me as a very needy

person and they tend to take over. My dad is convinced that I'm not really

in pain and the doctor also does nothing to dissaude him from that. My

father also pressures me to go walking with him, telling me that I have to

exercise and that will make the arthritis better. I keep trying to tell him

it doesn't work that way. My parents don't believe a thing I tell them,

either about how I feel or about what I have read online. They refuse to do

any research themselves. I have told my dad I do not want him in with the

doctor and myself, but then my mom and dad gang up on me and my dad says

that if he is taking me to the appointment he should be there. And I have

always given in, even though I do not want him there. The problem is, I am

so dependent on him. If he doesn't drive me to the doctors, I cannot go.

There is no one else I can get a ride with. If I have to go to the store to

get groceries, I have to ask my parents. If I need a medication at the

pharmacy, they have to get it. I can't risk getting them too upset with me

or I'll be with nothing to eat and no medication. That is the problem- but I

don't have the money to get a car of my own and there is no public

transportation nearby. I want to move to a place where I can find

transportation, but I don't have the money to hire a van or people to help

me move. And I can't get anywhere- I can't go looking for apartments without

someone to drive me. I have no friends in the area and no choice but to

depend on my parents for everything. I know that as a 35 year old woman it

is ridiculous that I need to constantly care what my parents think, but

there doesn't seem to be any way out of it.

I think I'm going to put my foot down tomorrow and not let my dad in to the

appointment. But I just hope the doctor finally begins listening to me.

On Tue, Mar 15, 2011 at 5:58 PM, em <IM4BUCS2000@...> wrote:

>

>

>

> I dont want this to come out the wrong way but how old are you. I mean are

> you over 18. If you are the doctor has no business talking to your father

> about your condition. It is illegal and breaks all the codes of privacy

> between patient and doctor. I think if you can get it printed out just hand

> it to him and ask him to read it. If you cant print it maybe someone at his

> office will give you the email address and you can send it that way.

> Possibly before your appointment so when you go in the doctor already knows

> how you are feeling. If you are over 18 speak to him yourself. He needs to

> respect you as an adult. If you have a friend who is not easily swayed by

> the medical profession have them go with you and help you explain. If that

> doesnt work find a new doctor. You deserve to be heard and to be helped not

> to have your dad railroaded by a doctor that does not believe you. Geez I

> hope that was not harsh. I dont mean it to be.

>

> Carol

>

>

>

[Guest guest]

Hi ,

Call your doctors office and tell them that you want to enforce the patient

privacy and have them tell your Dad that he will not be allowed in the room with

you. Just an idea!

Terri

[Guest guest]

You may want to try pulling up the RISE network on your computer and finding

articles that come close to explaining your pain. If he won't come to the

computer, print them out. Put them by his coffee cup, on his fav chair, bathroom

and even the 'fridge if you have to. He may just read them if you ask him to. RA

Warriors has a wonderful grouping of articles as well. It really does help

explain to friends/family the type of pain & problems that we all experience

w/RA. It may not be a lack of caring on his part, but denial that his little

girl can possibly be that sick. NO parent wants to hear that- but persevere my

young friend- there are many, many like you out here in the world that know what

and how you feel.

 

Gentle hugs,   in SC

[Guest guest]

I've found that a short dose of prednisone can do wonders and at times raising

my mtx 2.5 mlgs a week for awhile. I do allow myself to rest in bed but do much

better when I add the prednisone take some aspirin and then have periods of

short exercise.  DHEA, folic acid, and vitamins help to give me energy and then

I'm back to singing around the house, exercising, walking to the store and just

being as happy as I can be at the moment.

ladeyangll

________________________________

From: Terzo <sarah5775@...>

Sent: Mon, March 14, 2011 3:56:56 PM

Subject: [ ] Question on pain

 

hi. My pain has been really bad for the past week or so. The worst it's

ever been.my feet hurt so much that when I walk, it's like walking on

knives. It's so painful to walk that I try to avoid walking as much as

possible. This is the worst pain ever been in my entire life. I think it

may be partly because I didn't take my one medication for two weeks due to a

problem with insurance, not that I was doing very well even before I stop

taking it. I am on Sulfasalazine, Clonequinil, and the one I haven't been

taking is Arava. I finally got my refill and took it yesterday and today,

but no change so far. I have to have a serious talk with my doctor about

the level of pain on having and the problems I'm having. I've been under

treatment for six months but I feel just as bad as I did the day when I was

diagnosed -- no, I feel much worse.

My question is -- on days like today, I like to just lie in bed. Turn on

the radio lie down and try not to move. My question is, does this make it

hurt more in the long run or less? Should I be forcing myself to walk

around a little bit? Or should I be staying as still as possible. My dad

says I have to move around or it will be worse, but he doesn't know anything

about arthritis. I'm wondering what you guys have experienced. Is it

better to just lie flat and do as little as possible, or is it better to try

to do your daily activities as much as you can? Please give me whatever

feedback you can, I'm trying very hard to cope with this extremely painful

time.

[Guest guest]

That is just great and wonderful.  I am very happy for you.  You are living

your life around RA and doing great.

 

Hugs,

 

Barbara

From: Angll Nyte <ladeyangllfree@...>

Subject: Re: [ ] Question on pain

Date: Thursday, March 17, 2011, 5:32 AM

 

I've found that a short dose of prednisone can do wonders and at times raising

my mtx 2.5 mlgs a week for awhile. I do allow myself to rest in bed but do much

better when I add the prednisone take some aspirin and then have periods of

short exercise.  DHEA, folic acid, and vitamins help to give me energy and then

I'm back to singing around the house, exercising, walking to the store and just

being as happy as I can be at the moment.

ladeyangll

________________________________

From: Terzo <sarah5775@...>

Sent: Mon, March 14, 2011 3:56:56 PM

Subject: [ ] Question on pain

 

hi. My pain has been really bad for the past week or so. The worst it's

ever been.my feet hurt so much that when I walk, it's like walking on

knives. It's so painful to walk that I try to avoid walking as much as

possible. This is the worst pain ever been in my entire life. I think it

may be partly because I didn't take my one medication for two weeks due to a

problem with insurance, not that I was doing very well even before I stop

taking it. I am on Sulfasalazine, Clonequinil, and the one I haven't been

taking is Arava. I finally got my refill and took it yesterday and today,

but no change so far. I have to have a serious talk with my doctor about

the level of pain on having and the problems I'm having. I've been under

treatment for six months but I feel just as bad as I did the day when I was

diagnosed -- no, I feel much worse.

My question is -- on days like today, I like to just lie in bed. Turn on

the radio lie down and try not to move. My question is, does this make it

hurt more in the long run or less? Should I be forcing myself to walk

around a little bit? Or should I be staying as still as possible. My dad

says I have to move around or it will be worse, but he doesn't know anything

about arthritis. I'm wondering what you guys have experienced. Is it

better to just lie flat and do as little as possible, or is it better to try

to do your daily activities as much as you can? Please give me whatever

feedback you can, I'm trying very hard to cope with this extremely painful

time.