Problem with my Doctor, need suggestions

[Guest guest]

Hi. I am having a problem with my rheumatologist. I was diagnosed in may and

the doctor put me on Sulfasalazine and Arava. He also put me on Plaquenil,

but I had to go off it due to hair loss. I am still in a great deal of pain,

especially in the mornings. I can't type or do anything that I could do

before last December, when I first felt pain in my hands. My pain has spread

from my hands to my feet and knees, and there are days when I can't walk.

The doctor is giving me hydrocodone for pain, but I have to fight for it

every time. He keeps saying I should not be in the pain I'm in. I don't know

what my lab tests say but he seems to think I am doing better. I am in just

as much pain I was in when I was diagnosed. However, I heard him dictate

into to his recorder that I am in remission. He does not listen to me, and

has told my dad that I am better, and my dad is now giving me a hard time

about not being able to do things. How can I approach my doctor to explain

that I am NOT better?

I would switch drs, but that is not an option. I already have to have my dad

drive me almost an hour to get to this one, he will never drive me further.

The doctor is the only one in the area. I feel he is not listening to me at

all. What can I do?

is it normal to have no pain relief with treatment, to in fact be getting

pain in more areas, or should I be feeling better by now (8 months) or do I

need to give things more time? It is so frustrating.

[Guest guest]

Why don't you get a copy of your lab results; then you could see for

yourself the progression of your RA. If you don't know what everything

means, you can google and find out.

Has your doctor mentioned methotrexate? It is much better if a

combination of DMARDs can control the inflammation, without having to

rely on so many pain medications. That may be what your doctor is

thinking, too.

Keep telling him how much pain you're in. It does take a long time to

get the perfect combination of meds that work for each individual.

I would say to give it more time, but also keep complaining. Your

doctor may need to be more aggressive in his treatment, not by

prescribing more pain meds, but more or different DMARDs.

I have had RA for eight years, and it is very well controlled with

Enbrel and acetaminophen. It did take quite a while to get to this

point.

Good luck, and do keep us posted on your progress.

Sue

On Mar 1, 2011, at 9:43 AM, Terzo wrote:

> Hi. I am having a problem with my rheumatologist. I was diagnosed in

> may and

> the doctor put me on Sulfasalazine and Arava. He also put me on

> Plaquenil,

> but I had to go off it due to hair loss. I am still in a great deal

> of pain,

> especially in the mornings. I can't type or do anything that I could

> do

> before last December, when I first felt pain in my hands. My pain

> has spread

> from my hands to my feet and knees, and there are days when I can't

> walk.

> The doctor is giving me hydrocodone for pain, but I have to fight

> for it

> every time. He keeps saying I should not be in the pain I'm in. I

> don't know

> what my lab tests say but he seems to think I am doing better. I am

> in just

> as much pain I was in when I was diagnosed. However, I heard him

> dictate

> into to his recorder that I am in remission. He does not listen to

> me, and

> has told my dad that I am better, and my dad is now giving me a hard

> time

> about not being able to do things. How can I approach my doctor to

> explain

> that I am NOT better?

>

> I would switch drs, but that is not an option. I already have to

> have my dad

> drive me almost an hour to get to this one, he will never drive me

> further.

> The doctor is the only one in the area. I feel he is not listening

> to me at

> all. What can I do?

>

> is it normal to have no pain relief with treatment, to in fact be

> getting

> pain in more areas, or should I be feeling better by now (8 months)

> or do I

> need to give things more time? It is so frustrating.

[Guest guest]

First you need your dad to understand that the Doctor is mistaken. Do you have a

regular doctor that might speak to him for you

[ ] Problem with my Doctor, need suggestions

Hi. I am having a problem with my rheumatologist. I was diagnosed in may and

the doctor put me on Sulfasalazine and Arava. He also put me on Plaquenil,

but I had to go off it due to hair loss. I am still in a great deal of pain,

especially in the mornings. I can't type or do anything that I could do

before last December, when I first felt pain in my hands. My pain has spread

from my hands to my feet and knees, and there are days when I can't walk.

The doctor is giving me hydrocodone for pain, but I have to fight for it

every time. He keeps saying I should not be in the pain I'm in. I don't know

what my lab tests say but he seems to think I am doing better. I am in just

as much pain I was in when I was diagnosed. However, I heard him dictate

into to his recorder that I am in remission. He does not listen to me, and

has told my dad that I am better, and my dad is now giving me a hard time

about not being able to do things. How can I approach my doctor to explain

that I am NOT better?

I would switch drs, but that is not an option. I already have to have my dad

drive me almost an hour to get to this one, he will never drive me further.

The doctor is the only one in the area. I feel he is not listening to me at

all. What can I do?

is it normal to have no pain relief with treatment, to in fact be getting

pain in more areas, or should I be feeling better by now (8 months) or do I

need to give things more time? It is so frustrating.

[Guest guest]

Thank you for your feedback. I am very frustrated, but trying to be

positive. I talked to my mom about things. She agreed to take a day off of

work and go with me to talk to the doctor. I think she believes me that

things are not getting better, and I think it will be easier for me to be

assertive with her in my corner. Somehow it is hard for me to be assertive

about the way I feel. I feel like I've tried but I end up not being able to

get my message across. I don't speak up as much as I should, I guess. My

dad tends to hear what he wants to hear. he has problems with pain himself

(a herniated disk in his back) but sometimes tends to have the attitude of

" You don't know what pain is, now ME, I'M in pain! " (he has said that to me

on several occasions) he tends to kind of devalue what I am saying. Maybe i

do that to him too, I don't know. I try not to. No one knows how much pain

you are in but you. Who can say whether I or my dad is in more pain, and why

should that be a competition, anyway? But for him it seems to be a matter of

" I don't take pain meds or complain so neither should you. " That makes it

difficult to deal with him. If the apartment is dirty, for example, or the

dishes aren't done, he gives me a really hard time and says very hurtful

things, even when I try to explain my hands just hurt all the time and its

hard to keep up with the housework or that I didn't bring out the garbage

because my feet hurt too much. I try to keep the place as neat as possible

but it does get really hard. It's gotten to the point when I don't even

want him over. My mother tends to be a little more supportive.

I think I really have to get my test results. I need to know what they are

and what they mean. I am not seeing the dr for another two weeks, and by the

time I go, I want to have a game plan in place and know exactly what I'm

going to say and ask.

Thanks again for the support.

[Guest guest]

do you live with your parents. If your dad is dealing with the pain so

well why doesnt he help you with the housework. Dont let anybody make you ignore

you r symptoms becasue they think you dont hurt. You know better.

Carol

[Guest guest]

As for the Doc- he need to know that you are more than the sum of your

bloodwork- you are a whole person. Grow a pair and tell him EXACTLY what you

feel. You can do that without being ugly. Just state the facts.

 

As for your Dad- You have the internet. Print out some info about RA from the

RISE network or WebMD for him. He can't ignore the reality if he wants to even

half- listen. I have herniated discs myself ( degenerative disc disease as well

as Ankylosing Spondylitis ) and it hurts like 7 hells when it flares. Be

sensitive to his pain too. Read about his illness and maybe you can understand

him better.

 

Just deciding to be more proactive in general about your health  issues, with

your Doc, your Dad and yourself will help a lot. When you have better days, be

cheerful and do housework and maybe he will see the difference. Sometimes, we

all have to just suck it up hon- but it sure as heck isn't possible to do that

every single day. I hope you hang in there and find a better way to communicate

with the people in your life. You will be in my prayers. It is hard to be young

and feel so dang old isn't it?

 

Gentle hugs-- in SC

[Guest guest]

my family does not know the pain i'm in either. i don't think anyone

does, that has never had it. i have DDD, OA, and RA. not too long

ago, i lost use of my left hand. it became completely useless. the

dr. said it was the DDD in my neck..... it lasted for two weeks, then

got alright on its own. dr. says it can happen again,, my family just

looks at me like they think i'm crazy...lol.... my joints in my

shoulders sound like rattling paper.... hurts so bad to move, any

way.... most of the time pain pills don't help.

i've got a feeling, this condition doesn't get any better, since i'm

69 yrs. old...lol... anyone else with this same thing going on with

them ??

Betty, in Alabama

On 3/2/11, phyllis crubaugh <phylliscrubaugh@...> wrote:

> As for the Doc- he need to know that you are more than the sum of your

> bloodwork- you are a whole person. Grow a pair and tell him EXACTLY what you

> feel. You can do that without being ugly. Just state the facts.

>

> As for your Dad- You have the internet. Print out some info about RA from

> the RISE network or WebMD for him. He can't ignore the reality if he wants

> to even half- listen. I have herniated discs myself ( degenerative disc

> disease as well as Ankylosing Spondylitis ) and it hurts like 7 hells when

> it flares. Be sensitive to his pain too. Read about his illness and maybe

> you can understand him better.

>

> Just deciding to be more proactive in general about your health  issues,

> with your Doc, your Dad and yourself will help a lot. When you have better

> days, be cheerful and do housework and maybe he will see the difference.

> Sometimes, we all have to just suck it up hon- but it sure as heck isn't

> possible to do that every single day. I hope you hang in there and find a

> better way to communicate with the people in your life. You will be in my

> prayers. It is hard to be young and feel so dang old isn't it?

>

> Gentle hugs-- in SC

>

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