Re: Disappointed with Doctors

April 9, 2002

Hi ,

I really feel for you. I hope you can hang in there and pull through

this time. It will eventually change. I think everyone on this list

has probably experienced what you're going through at one time or

another.

It may be time to examine your expectation of what you think doctor's

can do for you. Doctors can only do so much. I know I kept hoping

that somehow, they could make it go away, but they can't. There are

some things that come along with any arthritis, which are talked

about to some degree in the Arthritis Foundation's Self-Help courses,

which I recommend everyone here take.

I'll sum up some of my own learning from my disease:

1) This is MY disease. No one else feels my pain, no one else lives

in my body. At the same time, I have to take the responsibility for

helping myself as best I can. And some of that includes using support

groups (like this one) and utilizing resources like the Arthritis

Foundation, going to real life support groups, etc.

I have to do my best to exercise as best I can, eat healthily, take

my vitamins, have social interactions, alter my expetcations to fit

my current reality, and manage my mental health. Those are the things

that _I_ can do outside of all the medications.

2) Arthritis is a disease about management- time management, energy

management, medication management, doctor management, social time

management, work management, etc.

3) Patience, patience and persistence.

4) Doctor's can only do so much. There is no cure for arthritis or

for fibromyalgia AT THIS TIME; there is no general known cause

either.

5) Your doctor is your partner in helping you manage the arthritis.

You have to be upfront with your doctor what kinds of treatments

you're willing to take. You also have to acknowledge that without

some treatments, you will be in pain. That is a choice you have to

make.

6) After experimenting with a lot of drugs, at some point I realized,

I'd rather have some of the pain than the drugs. In other words, not

all of my pain is being addressed, but it's better than the side-

effects. This is when diet experimentation kicks in, but be really

careful about some of those diet experiments. I can tolerate some

side-effects (like getting liver tests) but not others (like severe

chronic acid reflux from NSAIDs).

7) Psoriatic arthritis doesn't always cause joint damage like

rheumatoid arthritis does. So while it is still very debilitating due

to fatigue, joint pain, and general pain, most people with PA don't

have permanent joint damage. (Notice I said " most " . I know several of

us here do have joint damage, some pretty severe.) Swollen digits

usually return to normal, swollen tendons will usually subside (I've

been waiting for over 2 years on my ankle, but...). In other words,

there is hope and optimistic outcomes.

Hugs and best wishes,

Meghan

> I had my Dr. appointment yesterday...

April 10, 2002

In a message dated 04/09/2002 7:51:14 PM Eastern Daylight Time,

lesliesa@... writes:

> She got real pissed. She had me in tears more than once. She defended the

> jerk shrink, told me that I can accept the treatments they offer me or I

> can face the consequences of not properly treating my illness.

- Run, don't walk away from that doctor. No doctor should put you in

tears!!! They are there to treat YOU, and you includes your emotions, fears,

anxieties, etc. Any doctor who ignores the mental/emotional side of PA is an

idiot. Please find a rheumy who understands you - call your insurance

company for a list and see if they have a way to find out what the doctor's

philosophy is - you need one who will work with you and respect your wishes,

not one who fights you and puts you in tears!! At the very least the callous

idiot should understand how bad stress is for any condition, let alone PA,

and realize she's making you worse!

Good luck, and hang in there,

April 10, 2002

In a message dated 04/09/2002 8:42:54 PM Eastern Daylight Time,

meghan@... writes:

> I'll sum up some of my own learning from my disease:

>

> 1) This is MY disease. No one else feels my pain, no one else lives

> in my body. At the same time, I have to take the responsibility for

> helping myself as best I can.

Meghan - Well stated! Your whole post was a great description of exactly how

I feel we need to treat PA, but I think this first one summed it up the best -

It's MY disease - and being that it is, I have to take the responsibilities

that come with it.

Again, well said!

April 10, 2002

,

You did the right thing by confronting and asking your Rheumy the

questions you needed answers to. And it does sound like you stated you

went around in circles and got nothing accomplished. I know they are

hard to come by, but is there another Reumatologist in your area that

you might be able to see who is a little more compassionate? I know it

is a pain to start a new Dr. all over again but may be you might find

another who has a whole different way of treatment AND understanding,

AND listens to YOU.

Is it at all possible that your husband or another member of your family

go to the Rheumy with you so they can see first hand what and who you

are dealing with? My husband and I go to each others Drs. appts. as

much as we can so we both ask questions and understand what is going on.

I, am one of those people who sometimes forgets what my Dr. says by the

time I get to the car because of the list of questions I throw at them,

or like you get so upset with them not having an answer to a question I

ask, and I need that extra person for support and to help remember.

I have a cardiologist that I called the " Flash " because he would come in

check me out and before I knew it he was gone. I had a heart attack and

was scared to death and had so many questions. I started coming with a

list of questions and my husband. One time the Dr. started for the door

and my husband beat him to it and stood in front of it, not saying a

word, but the Dr. got the picture. I was able to get my questions in

and ever since that incident we have a much better patient/Dr.

relationship. As a matter of fact the Dr. asks me, " What, no lists

today? "

My humble opinion, and take it for what it is worth is that you need

some big time TLC and a Dr. that takes care of your needs. Everyone

with this disease is different and has different symptoms, aches, pains,

etc., etc. etc. It sounds like he/she is bunching you into one category

when we all know not 2 of us in this group have the same symptoms and

are being treated the same way.

My heart goes out to you and hope you can find someone that can really

help you. Please feel better and have a peaceful day.

Angera

[Moderator's Note: Excellent advice, Angera! I agree, I've started taking my

husband with me to Dr. appts and they go a little better (usually). But at least

we're listening with 2 sets of ears rather than 1. It helps! -Meghan]

April 11, 2002

Hi -- Boy, you sure have been having ahard time of it. Talk about

being between a rock and a hard place -- no support at home and none from

the doctors either. Whew! I'd think seriously about changing doctors. You

need to find someone who is at least sympathetic to your problems and who is

willing to work with you on finding the best treatment for you. A doctor who

gets mad when you question the medication he or she wants to prescribe is

one to steer clear of. We all have to take some responsibility ourselves for

whatever treatment we choose, and doctors should be happy when a patient

wants to do that. Any other type is just a witch doctor, in my opinion.

Maybe some of the other folks in this groups know of rheumies in your area

that would be more helpful. It's worth a try. Meanwhile, accept from me a

gentle hug and wishes for lighter, happier days ahead. -- Jan O', Alaska

[ ] Disappointed with Doctors

> I had my Dr. appointment yesterday... I had a long list of questions and

things I wanted to discuss with my Dr. today. She started out by telling me

that she knows that I call often and that I am in pain but she is doing her

best in treating me and there is only so much that can be done to treat this

illness. Basically she went on to say that she knows I am in pain and there

isn't much we can do about it so quit complaining. I tried to tell her my

families worries about all these medications and the adverse reactions and

how nothing works good enough, they think I am getting worse and they don't

understand why I am on so many medications and how the medications only

cause more problems. We got into it for me questioning the doctors,

including her, ability to treat me. I told her how the jerk shrink almost

caused my kidneys to shut down w/ the meds he prescribed. How he canceled

our appt. and didn't phone. How he raised my neurontin too high way too

fast. I told her h!

> ow my family was afraid that all these doctors were going to kill me by

over medication.

>

> She got real pissed. She had me in tears more than once. She defended

the jerk shrink, told me that I can accept the treatments they offer me or I

can face the consequences of not properly treating my illness. Who do I

believe? The doctors or my family? She said that they were unsupportive

b/c they don't do their research. I agree somewhat. However, my family is

much more concerned with my well-being and safety than any of the doctors.

She said they don't have medical degrees. Well they don't need medical

degrees to notice what the effect of all these medications have had on me.

She said, your family doesn't have to live with this disease. My husband

does. Why is it when you question the treatment options your doctor gives

you they get mad? Why is it they get even more angry when you tell them

" no, I won't take that. I won't put something harmful in my body. " She

started pushing prednisone. After struggling to get off of it I can't

believe she would tell me t!

> o get back on it. She knows about my ulcer (caused by the prednisone),

she knows that it made me go crazy (my GP confirmed that prednisone causes

psychosis), and my weakened immune system (which is why my GP almost

demanded that I get off it).

>

> Then she gave me the typical BS line that all dr.s do re: prednisone " at

doses 5mg and lower you won't have all of those side effects. " I think I

know better than her how my body responds to it and the toll it takes on my

body. I am so sick of doctors. I don't trust them at all. How many

mistakes are they allowed to make before they make that fatal one??? I

already had one doctor not believe me about my stomach pains and she left me

with an ulcer. That is just one more problem I have to treat/medicate

because of a dr.s incompetence. Then there are the dr.s that kept me on the

prednisone causing my immune system to weaken and the effects from that lead

to frequent infections (at least once every two months sometimes more

frequent than that). And these frequent infections usually stick around for

1-3 weeks.

>

> I am sure the anxiety can be attributed to the long term use of the

prednisone since I didn't have anxiety before. I think the depression was

exacerbated by the antidepressants b/c I wasn't depressed before only

unhappy. I used to hardly cry and now I can't stop. My best friend was

right when she told me that it is a vicious cycle. It seems like all these

doctors do with their expensive medicines is cause more problems to treat

with more expensive medicines. When will it stop? When they finally do

kill me? I understand that I have to treat my arthritis. I don't want to

wind up with irreversible damage/deformities or be confined to a wheelchair.

And I understand I have to treat the fibromyalgia, even though I don't know

what it is and to be quite honest the doctors don't either. I really don't

know what to do. She says they have to treat me for depression and anxiety

too. I honestly think that if my arthritis and fibromyalgia were adequately

treated and my pain de!

> creased then there would be no depression or anxiety. Is it possible for

medications to cause depression and anxiety? I know being chronically

ill/and in pain could...I just can't believe my doctor was mad at me.

Shouldn't I be the one who is mad? After all it is my body they are messing

around with and lately they have been messing it up.

>

> wishing everyone well,

>

April 11, 2002

Angera-- I loved the story about the cardiologist! Gave me a good laugh. I

could just picture it. Thanks for sharing. -- Jan O', Alaska

Re: [ ] Disappointed with Doctors

> ,

>

> You did the right thing by confronting and asking your Rheumy the

> questions you needed answers to. And it does sound like you stated you

> went around in circles and got nothing accomplished. I know they are

> hard to come by, but is there another Reumatologist in your area that

> you might be able to see who is a little more compassionate? I know it

> is a pain to start a new Dr. all over again but may be you might find

> another who has a whole different way of treatment AND understanding,

> AND listens to YOU.

>

> Is it at all possible that your husband or another member of your family

> go to the Rheumy with you so they can see first hand what and who you

> are dealing with? My husband and I go to each others Drs. appts. as

> much as we can so we both ask questions and understand what is going on.

>

> I, am one of those people who sometimes forgets what my Dr. says by the

> time I get to the car because of the list of questions I throw at them,

> or like you get so upset with them not having an answer to a question I

> ask, and I need that extra person for support and to help remember.

>

> I have a cardiologist that I called the " Flash " because he would come in

> check me out and before I knew it he was gone. I had a heart attack and

> was scared to death and had so many questions. I started coming with a

> list of questions and my husband. One time the Dr. started for the door

> and my husband beat him to it and stood in front of it, not saying a

> word, but the Dr. got the picture. I was able to get my questions in

> and ever since that incident we have a much better patient/Dr.

> relationship. As a matter of fact the Dr. asks me, " What, no lists

> today? "

>

> My humble opinion, and take it for what it is worth is that you need

> some big time TLC and a Dr. that takes care of your needs. Everyone

> with this disease is different and has different symptoms, aches, pains,

> etc., etc. etc. It sounds like he/she is bunching you into one category

> when we all know not 2 of us in this group have the same symptoms and

> are being treated the same way.

>

> My heart goes out to you and hope you can find someone that can really

> help you. Please feel better and have a peaceful day.

>

> Angera

>

> [Moderator's Note: Excellent advice, Angera! I agree, I've started taking

my husband with me to Dr. appts and they go a little better (usually). But

at least we're listening with 2 sets of ears rather than 1. It

helps! -Meghan]

>

April 12, 2002

Angera,

I thought this was the caring, compassionate one! So frustrating. I begin to

wonder if I will ever find a doctor that will work with me on this. I had my

list of questions and I didn't even get to ask them. This happens far too

often.

My husband will be going to my future doctor appointments. All of them. At

least until things are under control. This is something he is insisting. I

really love him for it.

When I mentioned to my rheumy about switching shrinks b/c he had basically

posioned me with too many meds. She said, " what - and start all over. " I am so

sick of starting over, changing doctors. I am scared of calling my rheumy now

after she treated me in her office. She made it pretty clear that she won't be

seeing me until my 3 month follow-up appointment. What kind of patient-dr.

relationship is that.

Angera, you are so right. I would give anything for a doctor that would

actually listen to me. I am now wishing I kept my PPO insurance policy. Sure

made things easier for changing doctors. Guess I will be looking for Dr. #4.

thanks,

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