Re: At what point do Rheumotologist start giving serious pain medica

[Guest guest]

Jules,

Thank you for taking the time to respond so thoroughly. Everything you

mentioned answered my questions very well.

You do understand exactly the way it is with the Embrel. I love it! But

just like you describe, it makes me feel a little too good and I end up

over doing it and pay for it almost every time! I just get tickled when I

hear someone talk about it in such a way that I experience it too. I try to

catch up on chores and things while feeling good, then fall behind again.

Vicious cycle.

Thanks again for all the valuable info. You gave me a lot to go on.

Hope your day is well,

_Re: At what point do Rheumotologist start giving serious pain medica _

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Posted by: " delierwestland " _abcd123@... _

(mailto:abcd123@...?Subject=

Re:%20At%20what%20point%20do%20Rheumotologist%20start%20giving%20serious%20pain%\

20medica) _delierwestland _

(delierwestland)

Thu Oct 14, 2010 3:22 am (PDT)

That's a tough situation. They sort of go in order of potentcy/drug

classification. They need several months of documented proof that the milder

things are not effective.

Some of the things you mentioned are pretty strong and are in the narcotic

family. Darvocet is one of the weaker narcotics, while vicodin is a much

stronger one. I don't know what doses you were taking. You may know this,

but I'll add it anyway...pain meds work better if they are already on board.

It is much harder to relieve severe pain if no meds have been taken for a

few days prior. Just like menstrual cramps, if you take the advil 3 days

before your period the cramps are not as bad, and the meds you take work

better. So taking it only during a flare may not be your best bet, even though

you're trying to limit what you put in your body. The next category of pain

meds stronger than what you mentioned are things like a fentynal patch,

which is incredibly strong, it's what they give you during surgery. It will

take away 100% of your pain, but it takes 3 days to be fully effective, and

you can't drive, work, or even sometimes walk around on that.

I take enbrel as well, and have for 8 years. I do the shot every 6 days,

but I also take 2 vicodin a day (7.5 mg each), 2 soma at night (350 mg

each), 800 mg of neurontin a day, and I still need about 3000 mg of tylenol a

day. (my stomach is trashed from years of an old rhuemy experimenting with

dozens of anti-inflammatoriesI take enbrel as well, and have for 8 years. I

do the shot every 6 days, but I also take 2 vicodin a day (7.5 mg each), 2

soma at night (350 mg each), 800 mg of neurontin a day, and I still need

about 3000 mg of tylenol a day. (my stomach is trashed from years of an old

rhuemy experimenting with dozens of anti-inflammatories<WBR>...which only

did so much, then plaquenil, then mtx) I still have prednisone I take as

needed. The combination of the soma, vicodin, and neurontin I take at night

makes me about 80% pain free, and helps me sleep really good. Some occassional

med mj works well al

You need to document and be persistant with your doc, and play by their

rules for awhile. (Maybe 6 mo. to a year) After that time you can say " I have

tried it your way, and I am still in disabling pain. I need to function,

and if it takes ___________ medication to do so, I will assume the risks so

I can work/parent/You need to document and be persistant with your doc,

and play by their rules for awhile. (Maybe 6 mo. to a year) After that time

you can say " I

I find on the enbrel I really have to self regulate my activity level. The

enbrel makes me really loosey goosey, and I have more energy, so what I

end up doing is over-doing it. I work too hard, stand too long, garden too

long, lift too much, clean too much, because I can and I feel good and I feel

like I better get it done before I can't move again. But once I stop, I

have such severe pain that I can't move for days. So I really have to struggle

to remind myself I can not do what other people my age can do. Even if I

feel good I MUST take breaks, lay down, put my feet up, whatever I can to

rest my body. I also use a really great heat thing, it has lots of herbs that

relax the muscles and tissues, and it has white willow bark (asprin) which

improves the circulations to that area, so I find after I take my meds if

I lay on the heat pack the meds sort of work on that area better. You can

also try splitting the pills so they break down faster and you get more

relief faster.

Good luck to you, keep your chin up! and stay strong!

jules

[Guest guest]

Hi Doreen,

Thank you for getting back to me on this subject. Maybe that is something

I'm going to have to do is get an appointment with a pain management

doctor.

I've been diagnosed since 2008 and still learning. I didn't know that we

can have more than one doctor working with us for the same reason.

As for taking MTX by injection... Ohhhhh!!! God! knows how much I hate

getting the Embrel shot as it is. LOL! I still cry like a baby every week

when I get my shot!! I know... that is really silly. LOL

I don't like how MTX feels in my body and I feel I can do without it. I'm

really happy with the Embrel. Just have once in a while I think it might

be called brake through pain. I might be confusing the Rheumy when I tell

him flare ups, I don't know.

But I think I'm okay with the Embrel and maybe something to help with the

over doing it RA revenge pain.

Once again, thank you Doreen for the info.

Hope you are feeling better.

Michigan

_Re: At what point do Rheumotologist start giving serious pain medica _

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Posted by: " Mimi " _mimi212@... _ (mailto:mimi212@...?Subject=

Re:%20At%20what%20point%20do%20Rheumotologist%20start%20giving%20serious%20p

ain%20medica) _dodo32763 _ (dodo32763)

Thu Oct 14, 2010 5:50 am (PDT)

Hi - I'm so sorry you are having so much pain. My Rheumy wouldn't

give me anything for pain - he'd say take Tylenol Arthritis - we all know that

is a joke for the really bad pain. I finally found a pain management

doctor that would work with my Rheumy. I'm thinking that is going to be your

best route. I've been seeing mine for going on a year now (I think) and he is

just awesome. In addition to the pain meds I take as needed, he is able to

do injections into the inflammed areas. Yesterday I had injections in my

lower back because that and my right hip were giving me such a tough time and

nothing was touching it. I'm happy to say the pain is ALOT cooler today

than it has been in a very long time. Last month it was my right shoulder -

again, awesome relief!

Just curious, why don't you want to do the MTX injections? I switched from

the pills to the injections and my side effects were a lot less than with

the pills.

Doreen

[Guest guest]

OKD,

Bless your heart for the info you have given me. I'm going to be all over

it. Thank you so much. I'll see which my Rheumy or my GP will recommend

me to a pain management.

Sounds like you are under some good care. Very happy for you and it gives

the rest of us hope.

Thank you so much for responding to my post. Hope you are feeling

well.

Michigan

5a.

_Re: At what point do Rheumotologist start giving serious pain medica _

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Posted by: " OKD " _Cofade_2000@... _

(mailto:Cofade_2000@...?Subject=

Re:%20At%20what%20point%20do%20Rheumotologist%20start%20giving%20serious%20pain%\

20medica) _cofade_2000 _ (cofade_2000)

Mon Oct 18, 2010 7:15 am (PDT)

I read your frustration. I HATE IT when they don't listen to the patient

(many doctors fit this cetegory).

You can ask your primary care physician for a referral to a pain

management specialist, or depending on your insurance, you can ask your

Rheumatologist for one. This is what you need. Dont take no for an answer!

I alternate with Morphine and/or Dilaudid, once a day is all I needed to

manage the pain of the flares or breakthrus. At first the Morphine was 3

times per day, but as I am coming to the right cocktails, I have lessened what

I take, now its one pill per day, unless I am flaring. When I feel I dont

need it anymore, they will taper me, very slowly, until I am off it. I

can't forsee when that will be, because RA is an ugly, wily monster that keeps

outsmarting me. But i have the best pain management doctor in the world her

name is Dr. Shaiova in NYC and god bless her, because of her I am

relatively comfortable. God Bless the specialiaty too, because many people

have chronic pain.

I hope this helps. OKD

[Guest guest]

Kami,

Thank you for responding to my post. No, I didn't know that the rheumys

wouldn't go much stronger than vicodin. Would have been nice if they would

have given me this info. Thank you!!! I'm so glad I belong to this group.

I knew they like to care for the inflamation, but I had no idea until now

that they won't even refer me! Grrr...

I know what to do now, thanks to my RA support group friends.

Hope your day is kind to you.

Michigan

[Guest guest]

Yeah... I like that! LOL

Michigan.

Oh and if I forgot to sign my name to the message to Kami, I'm so sorry.

;-( I got in a hurry.

..

_Re: At what point do Rheumotologist start giving serious pain medica _

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NlYwNkbXNnBHNsawN2bXNnBHN0aW1lAzEyODc0NDUzMTE-)

Posted by: " " _Rheumatoid.Arthritis.Support@... _

(mailto:Rheumatoid.Arthritis.Support@...?Subject=

Re:%20At%20what%20point%20do%20Rheumotologist%20start%20giving%20serious%20pain%\

20medica)

_gina_walker_ras _ (gina_walker_ras)

Mon Oct 18, 2010 4:27 pm (PDT)

I see T-shirt possibilities in your last paragraph, Kami.

Not an MD

[Guest guest]

,

Another of my favorites for a T-shirt (to be worn to appointments, if you dare):

It's the pain, stupid!

Not an MD

On Mon, Oct 18, 2010 at 7:04 PM, <Normsgrl@...> wrote:

> Yeah... I like that!  LOL

>

>

> Michigan.

[Guest guest]

,

Oh I love it! If my doc didn't manage my pain I would definitely wear something

like that!

> > Yeah... I like that!  LOL

> >

> >

> > Michigan.

>

[Guest guest]

One of the rheumy fellows that I was seeing (along with the rheumy)

once said, " We're concerned with the inflammation, not the pain. " I

thought that was a terrible thing to say.

Sue

On Oct 19, 2010, at 12:41 PM, ktandtm wrote:

>

> Oh I love it! If my doc didn't manage my pain I would definitely

> wear something like that!

>

[Guest guest]

I have been to three different Rheumies and they all say the same thing. They

will do nothing for the pain just the inflammation.  And for that they have only

one answer.... Increase your Prednisone...Isn't that funny!

 

Arne

 

 

 

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[Guest guest]

The next thing out of my mouth woulda been--

 

" There is a person attached to this disease you jerk- you're fired. " Having

decided back in 1997 that I am a person with a physical problem and not a

walking disease masking as a person ( although it feels that way sometimes ).

 

Chris

 

One of the rheumy fellows that I was seeing (along with the rheumy)

once said, " We're concerned with the inflammation, not the pain. " I

thought that was a terrible thing to say.

[Guest guest]

You know... I really thought I had a high pain tolerance.... and then came RA. I

would rather be in labor because they would at least offer me an epidural and at

some point, the pain would go away!

From:

Sent: Monday, October 18, 2010 8:08 PM

Subject: Re: [ ] Re: At what point do Rheumotologist start giving

serious pain medica

,

Another of my favorites for a T-shirt (to be worn to appointments, if you dare):

It's the pain, stupid!

Not an MD

[Guest guest]

Says the man who treats RA and doesn't have it himself........ I would have

schooled him on pain. Or told him maybe he should consider being a

dermatologist!

From: marysue

Sent: Tuesday, October 19, 2010 3:45 PM

Subject: Re: [ ] Re: At what point do Rheumotologist start giving

serious pain medica

One of the rheumy fellows that I was seeing (along with the rheumy)

once said, " We're concerned with the inflammation, not the pain. " I

thought that was a terrible thing to say.

[Guest guest]

APPLAUSE!

I could see me saying something like that.... Probably with a couple 4 letter

words because when I am in pain, I am not the most pleasant person around!!!!!!

From: phyllis crubaugh

Sent: Tuesday, October 19, 2010 5:29 PM

Subject: Re: [ ] Re: At what point do Rheumotologist start giving

serious pain medica

The next thing out of my mouth woulda been--

" There is a person attached to this disease you jerk- you're fired. " Having

decided back in 1997 that I am a person with a physical problem and not a

walking disease masking as a person ( although it feels that way sometimes ).

Chris

[Guest guest]

I had a nurse continue to tell me that and FINALLY told the doctor about it when

I got to see her.... Stop placating me with Prednisone and Vicodin and let's

find something that is going to WORK!

I was a piece of work earlier this year... I was in a vicious pain cycle and I

am pretty sure they would have willingly discharged me as a patient I was that

ornery!!!!!!

From: Arne

Sent: Tuesday, October 19, 2010 4:14 PM

Subject: Re: [ ] Re: At what point do Rheumotologist start giving

serious pain medica

I have been to three different Rheumies and they all say the same thing. They

will do nothing for the pain just the inflammation. And for that they have only

one answer.... Increase your Prednisone...Isn't that funny!

Arne

[Guest guest]

Sue,

I'm on my 3rd Rheumy. This ones a lady. They have ALL said that to me,

even this new lady one. Oh so frustrating. ;-(

Michigan

2b.

_Re: At what point do Rheumotologist start giving serious pain medica _

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Posted by: " marysue " _marysue@... _

(mailto:marysue@...?Subject=

Re:%20At%20what%20point%20do%20Rheumotologist%20start%20giving%20serious%20pain%\

20medica) _splaster27239 _

(splaster27239)

Tue Oct 19, 2010 12:46 pm (PDT)

One of the rheumy fellows that I was seeing (along with the rheumy)

once said, " We're concerned with the inflammation, not the pain. " I

thought that was a terrible thing to say.

Sue

[Guest guest]

,

That is a real good one too! But I don't think I'm brave enough yet to

wear it in the rheumy's office! LOL!!!!

But I will keep it in mind for my last visit! Hee hee hee

Michigan

7d.

_Re: At what point do Rheumotologist start giving serious pain medica _

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Posted by: " " _Rheumatoid.Arthritis.Support@... _

(mailto:Rheumatoid.Arthritis.Support@...?Subject=

Re:%20At%20what%20point%20do%20Rheumotologist%20start%20giving%20serious%20pain%\

20medica)

_gina_walker_ras _ (gina_walker_ras)

Mon Oct 18, 2010 5:09 pm (PDT)

,

Another of my favorites for a T-shirt (to be worn to appointments, if you

dare):

It's the pain, stupid!

[Guest guest]

Arne,

That right there is exactly what I have been running into. I'm on my 3rd

rheumy now and she said it too! OMG! Unbelievable!

Yeah and it seems like increasing the predisone is the answer to

everything. Even after I told them that stuff don't take effect until next

day. I

only need something to get through the god forsaken pain that I'm

experiencing right now. But by the time the predisone kicks in, my flare is

over.

That is so dumb! Makes me want to pull all of my hair out!!!

Thanks for letting me vent! LOL

Hope you are having a pain free day.

Michigan

_Re: At what point do Rheumotologist start giving serious pain medica _

(grou

p/ /message/137974;_ylc=X3oDMTJyOXFzajl1BF9TAzk3MzU5NzE1BGdycElkAzEwMTQ\

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Posted by: " Arne " _arnegraphics@... _

(mailto:arnegraphics@...?Subject=

Re:%20At%20what%20point%20do%20Rheumotologist%20start%20giving%20serious%20pain%\

20medica) _arnegraphics@... _

(arnegraphicssbcglobal (DOT) net)

Tue Oct 19, 2010 4:23 pm (PDT)

I have been to three different Rheumies and they all say the same thing.

They will do nothing for the pain just the inflammation. And for that they

have only one answer.... Increase your Prednisone.Prednisone.<WBR>..Isn

Arne

[Guest guest]

Kami,

LOL!!! So true!!!

Michigan

_Re: At what point do Rheumotologist start giving serious pain medica _

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Posted by: " ~ Kami ~ " _kamilleon@... _

(mailto:kamilleon@...?Subject=

Re:%20At%20what%20point%20do%20Rheumotologist%20start%20giving%20serious%20pain%\

20medica) _kamilleon@... _

(kamilleonymail)

Wed Oct 20, 2010 4:01 am (PDT)

You know... I really thought I had a high pain tolerance...You know... I

really thought I had a high pain tolerance...<WBR>. and then came RA. I

would rather be in labor because they would at least

[Guest guest]

I would love to have a tshirt that says that!! and I would wear it. !

> > Yeah... I like that!  LOL

> >

> >

> > Michigan.

>

[Guest guest]

Hi All,

I just joined this group and I'm jumping right in! If I didn't have pain meds,

I would OFF myself! The pain can become overwhelming at times. My rheumy

believes in pain meds and pain relief, thank goodness. In fact, they have told

me, at times, that I don't take enough!

I think doctors are scared to death of malpractice. And who can blame them in

this lawsute happy land. But any sheumy worth their salt KNOWS the chronic pain

of RA and other autoimmune diseases.

Be really blunt with your doctor, and tell them how much pain you are in. Tell

them you need relief NOW. If they still refuse to prescribe any pain management

meds, ask them to 'refer' you to a doctor who will work with pain management.

Some will do it, some will get PO'ed. Who cares if they do. They aren't the

ones who are hurting.

I left one young doctor because if it wasn't in his lab results, it didn't

exist. He made a tacky remark about if I don't improve by next visit, he may

just turn me over to a psychiatrist! SERIOUSLY?! I left, found another doctor.

I can't take Prednisone. It makes me terribly depressed. You may want to do

some research and see if there are any Pain Management doctors in your area.

But I would refuse to just sit and be in terrible pain all the time.

My 2 cents worth!

Kay in Texas

>

> Arne,

>

> That right there is exactly what I have been running into. I'm on my 3rd

> rheumy now and she said it too! OMG! Unbelievable!

>

> Yeah and it seems like increasing the predisone is the answer to

> everything. Even after I told them that stuff don't take effect until next

day. I

> only need something to get through the god forsaken pain that I'm

> experiencing right now. But by the time the predisone kicks in, my flare is

over.

> That is so dumb! Makes me want to pull all of my hair out!!!

>

> Thanks for letting me vent! LOL

>

> Hope you are having a pain free day.

>

>

> Michigan

[Guest guest]

Kay,

I've lost count how many times I said that this pain makes me want to blow

my head off! It is unbelievable when a doctor will tell you that you can't

have any pain meds at this time. Maybe I'm not making enough noise.

I try to tell them how bad it is and they say " yes I know, I do

understand " .

I will take yours and everyone else's advice and not give up. I'll be

more blunt with my rheumy and ask for referral and search me a pain

management doctor. And a Rheumy that cares. It seems so far the rheumies that

I

have been to go by some kind of chart instead of knowledge in their head. I

guess what I'm saying is when I go into the office...They will fire

questions at me and don't really want to hear anything else I have to say

except

the answers to their questions as they are checking a chart or something as

they are asking the questions. This to me is a sign that they don't really

know what is going on and have to go strictly by a chart. That tells me

lack of experience or something.

Often what I go through doesn't have anything to do with the questions they

are firing off at me. Then I start believing maybe something else wrong

with me, until I start reading the messages here on this group. Then I

start feeling right at home.

I think a good doctor will sit and listen to what you are saying and then

check their paperwork or charts or whatever it is they are doing. It is

almost like if I say something that isn't on that chart , it is irrelevant.

ALL three of my rhuemy's do this.

But after chatting with you guys, I am reminded that there are good doctors

out there and it just takes a little effort and persistence and patience

to find them. But they are out there somewhere.

Thanks again for chiming in Kay!

Hope you are having a good day.

Michigan

..

_Re: At what point do Rheumotologist start giving serious pain medica _

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Posted by: " aycocks75701 " _2aycocks@... _

(mailto:2aycocks@...?Subject=

Re:%20At%20what%20point%20do%20Rheumotologist%20start%20giving%20serious%20pain%\

20medica) _aycocks75701 _

(aycocks75701)

Sun Oct 24, 2010 5:48 pm (PDT)

Hi All,

I just joined this group and I'm jumping right in! If I didn't have pain

meds, I would OFF myself! The pain can become overwhelming at times. My

rheumy believes in pain meds and pain relief, thank goodness. In fact, they

have told me, at times, that I don't take enough!

I think doctors are scared to death of malpractice. And who can blame them

in this lawsute happy land. But any sheumy worth their salt KNOWS the

chronic pain of RA and other autoimmune diseases.

Be really blunt with your doctor, and tell them how much pain you are in.

Tell them you need relief NOW. If they still refuse to prescribe any pain

management meds, ask them to 'refer' you to a doctor who will work with pain

management. Some will do it, some will get PO'ed. Who cares if they do.

They aren't the ones who are hurting.

I left one young doctor because if it wasn't in his lab results, it didn't

exist. He made a tacky remark about if I don't improve by next visit, he

may just turn me over to a psychiatrist! SERIOUSLY?! I left, found another

doctor.

I can't take Prednisone. It makes me terribly depressed. You may want to

do some research and see if there are any Pain Management doctors in your

area. But I would refuse to just sit and be in terrible pain all the time.

My 2 cents worth!

Kay in Texas