test

[Guest guest]

Tina?

It would be easier if you signed your post. I’m not sure what you are asking.

Are you saying your doctor doesn’t prescribe pain medication? Or that you

cannot take your medication and have the drink during working hours?

It isn’t recommended to drink while on several on the medications but that is

a choice only you can make. Drinking and pain medication is especially

dangerous.

Hopefully we can help answer what you need to know.

From: Tina Sklar

Subject: Re: Test

Why is it that I can't get any pain killers? I'm only on methodrexate,

plaquenil, lyrica & klonopin. When I take a klonopon I usually have a black

russian to go with it - that seems to take the edge off. I can't do this during

working hours. Any ideas?

[Guest guest]

Sorry I forgot to sign.  Neither my rheumatologist or primary care dr. will

prescribe any pain meds.  Any thoughts on this?          

Tina

Sent from Yahoo! Mail on Android

[Guest guest]

Mine won't either! I  take over the counter stuff but they keep telling me I

need to stop taking those because they are hard on my liver. I am out of

options. They look at me and tell me they can't give me any pain pills. I am 37

but look younger so they think i just want them to sell. Good Luck!!

[Guest guest]

Mine won't either! I  take over the counter stuff but they keep telling me I

need to stop taking those because they are hard on my liver. I am out of

options. They look at me and tell me they can't give me any pain pills. I am 37

but look younger so they think i just want them to sell. Good Luck!!

[Guest guest]

Dear Tina and ,

Have you taken the hand outs that you can order from the Still's Foundation

to your doctors? There is a section on there where it says that pain is a

typical part of Still's and needs to be treated as pain itself can set off

a flare. That might help. I know it helped with my pain doc. It may be

that their practices do not treat pain, as my rheumatologist's and my

neurologist's offices decided not to do. I had to be referred to a pain

specialist, but at least he will listen a bit. You may need to ask them to

refer you to a pain specialist. Mine counts my pills and does a UA each

time to make sure the substances are in my body and not being sold. It's

humiliating, but at least I can get someone to pay attention to pain. It

is a constant part of this disease and needs to be treated as a serious

symptom.

Keep asking for what you need, don't be shy about asking!

Take care, and good luck!

*Holly *

*hollydorst@...*

*

*

> **

>

>

> Mine won't either! I take over the counter stuff but they keep telling me

> I need to stop taking those because they are hard on my liver. I am out of

> options. They look at me and tell me they can't give me any pain pills. I

> am 37 but look younger so they think i just want them to sell. Good Luck!!

>

>

>

>

[Guest guest]

I know how frustrating this is, as I lived it for the 1st 3 or 4 years I

was ill.....You have to locate a Dr that (A) knows what Stills disease is

( knows what to use and how to monitor your usage of it as you do not

want to become dependent on pain meds.... © IS AGGRESSIVE!

I'm fortunate in that my PCP and Pain Management Dr. that I have now are

class 1 Doctors! It took me quite awhile to whittle through the bad and

ineffective to get to this point however, so buckle down for the haul.

My RD told me on my initial visit 7 or 8 years ago that he doesn't

prescribe pain meds, but he is such a fantastic Dr. that I don't care. He

is aware of each and every med I am on, and I keep tabs on what I use, the

amount and for what reason. It is sick to see the difference between summer

and winter in my case......in the summer I may get by with less than 1 pain

med per week (except this year!!) where as in the winter my usage

skyrockets, but I still never go through a prescription in less than 3

months, and I will not allow myself to do so as I need to be able to have

control of my mind. The ironic part which I've asked my Dr's about is that

I have never felt any type of " high " or anything close to it with the pain

meds I have, which are as strong as I've seen. Their explanation is that

when you truly need that type of med, you're generally not going to get

that " feel " from it. Truth be told when I'm hurting really bad I take them

to hopefully knock myself out!

If I can be of more assistance, do not hesitate to ask. If you lived

near me (NE PA) I could refer you to known great Dr's!. Wherever you live,

I'm sure there is someone nearby that can send you in the right direction.

Best of luck, Kirk.

> **

>

>

> Why is it that I can't get any pain killers? I'm only on methodrexate,

> plaquenil, lyrica & klonopin. When I take a klonopon I usually have a

> black russian to go with it - that seems to take the edge off. I can't do

> this during working hours. Any ideas?

>

>

>

> Sent from Yahoo! Mail on Android

>

>

>

[Guest guest]

PS..I forgot to add that alcohol and all medications are a bad mix!!!! I

highly recommend being very careful with this. Don't get me wrong, I enjoy

a beer or two from time to time, but NEVER while on any type of pain

medication. Besides, my headaches alone without booze are enough to make

eating a .44 Magnum look appealing at times, so I try to do nothing to make

them any worse (if that was even possible) than they already get!

Kirk.

> I know how frustrating this is, as I lived it for the 1st 3 or 4 years I

> was ill.....You have to locate a Dr that (A) knows what Stills disease is

> ( knows what to use and how to monitor your usage of it as you do not

> want to become dependent on pain meds.... © IS AGGRESSIVE!

> I'm fortunate in that my PCP and Pain Management Dr. that I have now

> are class 1 Doctors! It took me quite awhile to whittle through the bad and

> ineffective to get to this point however, so buckle down for the haul.

> My RD told me on my initial visit 7 or 8 years ago that he doesn't

> prescribe pain meds, but he is such a fantastic Dr. that I don't care. He

> is aware of each and every med I am on, and I keep tabs on what I use, the

> amount and for what reason. It is sick to see the difference between summer

> and winter in my case......in the summer I may get by with less than 1 pain

> med per week (except this year!!) where as in the winter my usage

> skyrockets, but I still never go through a prescription in less than 3

> months, and I will not allow myself to do so as I need to be able to have

> control of my mind. The ironic part which I've asked my Dr's about is that

> I have never felt any type of " high " or anything close to it with the pain

> meds I have, which are as strong as I've seen. Their explanation is that

> when you truly need that type of med, you're generally not going to get

> that " feel " from it. Truth be told when I'm hurting really bad I take them

> to hopefully knock myself out!

> If I can be of more assistance, do not hesitate to ask. If you lived

> near me (NE PA) I could refer you to known great Dr's!. Wherever you live,

> I'm sure there is someone nearby that can send you in the right direction.

> Best of luck, Kirk.

>

>

>

>

>> **

>>

>>

>> Why is it that I can't get any pain killers? I'm only on methodrexate,

>> plaquenil, lyrica & klonopin. When I take a klonopon I usually have a

>> black russian to go with it - that seems to take the edge off. I can't do

>> this during working hours. Any ideas?

>>

>>

>>

>> Sent from Yahoo! Mail on Android

>>

>>

>>

[Guest guest]

Hello Tina,

 

What does the doctor say exactly when you discuss your options for pain? When he

says no you can't have pain medications, when you ask why, what is the problem

with why I can't, what does he say?

 

Does he know that you drink with Klonopin? This is very dangerous. Mixing

alcohol with benzodiazapines can kill someone. Your body has to eliminate the

alcohol through your liver which can also be dangerous when you are already take

MTX especially. That could be part of the problem with why no pain meds. Why

don't you ask the doctor about it and see if that is why.

 

It's always best to have an open and honest relationship with the doctor if you

want to receive pain medications. They need to trust us that we will be diligent

and not abuse them to protect themselves.

 

Just a few things that I thought of out of experiences from my life.

 

Good Luck,

>To: " Stillsdisease " <Stillsdisease >;

" pjnormanray@... "

>Sent: Monday, August 27, 2012 10:30 AM

>Subject: Re: Test

>

>

> 

>Why is it that I can't get any pain killers?  I'm only on methodrexate,

plaquenil, lyrica & klonopin.  When I take a klonopon I usually have a black

russian to go with it - that seems to take the edge off.  I can't do this

during working hours.  Any ideas?

>

> 

>

>Sent from Yahoo! Mail on Android

>

>

[Guest guest]

My dr. did mention that perhaps I should see a pain management dr. - that's

probably what I'll do - I just have so many issues going on at once.  Terrible

jaw/facial pain that he wants me to get an M.R.I. on.  My kidney function level

is high so I 'm waiting to see what he's going to do about that.  My arms, legs

& feet are aching like crazy.  Does anyone else have any of these symptoms & if

so what do you do?

Thanks,

Tina

Sent from Yahoo! Mail on Android

[Guest guest]

Tina,

Thank you for signing. I know when sick we forget to sign and I don’t mean to

make you feel bad. With newer members it is hard to know who we are talking to.

I would hope that since your doctor mentioned a pain specialist he/she would

have followed up with a recommendation of who to see and if you need a referral.

It is understandable that so many appointments, tests, pain and illness leave

you feeling overwhelmed!

When Still’s was so active for me I did have it set in to my jaw bone and so

many other areas of my body at once. When the liver is involved perhaps that

would make a difference as to what type of pain medications they would use but

there is medications that are easier on the liver for pain and if the doctors

are aware of your status they may be able to treat your pain with that in mind.

As to the joint pain, in the early years my doctor had me go to physical and

occupational therapy as needed and the inflammation and pain was treated with

heat, ice, warm wax therapy and hydro therapy. Stretching and range of motion to

maintain movement and muscle strength. I also learned biofeedback therapy over

the years and self hypnoses along with pain medications. I’ve always used a

combination of pain management techniques not just narcotics.

If you write down 5 things you want to discuss with your doctor beginning with

the most important for your visit I find that helps. Or if you have a tape

recorder and ask first, often doctors will not mind if you use that to help

review what is said later on.

Let us know how it goes please and we shall hope it is positive. Keep sharing

because hopefully that makes it a little less overwhelming.

Many hugs,

From: Tina Sklar

Subject: Re: Test

My dr. did mention that perhaps I should see a pain management dr. - . My

arms, legs & feet are aching like crazy. Does anyone else have any of these

symptoms & if so what do you do?

Thanks,

Tina

[Guest guest]

the jaw is tmj pain and have had same as u but pain managment it sucks they look

at u like a addict and treat ya that way they dont understand they want u to

take so much of the pain wnt give what is needed

 

To: " Stillsdisease " <Stillsdisease >;

" butterflychaser999@... "

Sent: Tuesday, August 28, 2012 6:44 AM

Subject: Re: Test

 

My dr. did mention that perhaps I should see a pain management dr. - that's

probably what I'll do - I just have so many issues going on at once.  Terrible

jaw/facial pain that he wants me to get an M.R.I. on.  My kidney function level

is high so I 'm waiting to see what he's going to do about that.  My arms, legs

& feet are aching like crazy.  Does anyone else have any of these symptoms & if

so what do you do?

Thanks,

Tina

Sent from Yahoo! Mail on Android

[Guest guest]

the jaw is tmj pain and have had same as u but pain managment it sucks they look

at u like a addict and treat ya that way they dont understand they want u to

take so much of the pain wnt give what is needed

 

To: " Stillsdisease " <Stillsdisease >;

" butterflychaser999@... "

Sent: Tuesday, August 28, 2012 6:44 AM

Subject: Re: Test

 

My dr. did mention that perhaps I should see a pain management dr. - that's

probably what I'll do - I just have so many issues going on at once.  Terrible

jaw/facial pain that he wants me to get an M.R.I. on.  My kidney function level

is high so I 'm waiting to see what he's going to do about that.  My arms, legs

& feet are aching like crazy.  Does anyone else have any of these symptoms & if

so what do you do?

Thanks,

Tina

Sent from Yahoo! Mail on Android

[Guest guest]

the jaw is tmj pain and have had same as u but pain managment it sucks they look

at u like a addict and treat ya that way they dont understand they want u to

take so much of the pain wnt give what is needed

 

To: " Stillsdisease " <Stillsdisease >;

" butterflychaser999@... "

Sent: Tuesday, August 28, 2012 6:44 AM

Subject: Re: Test

 

My dr. did mention that perhaps I should see a pain management dr. - that's

probably what I'll do - I just have so many issues going on at once.  Terrible

jaw/facial pain that he wants me to get an M.R.I. on.  My kidney function level

is high so I 'm waiting to see what he's going to do about that.  My arms, legs

& feet are aching like crazy.  Does anyone else have any of these symptoms & if

so what do you do?

Thanks,

Tina

Sent from Yahoo! Mail on Android

[Guest guest]

Been up all nite in agony.  My dr. doubled my dosage of lyrica - I don't know if

that will make a difference.  I can't understand how or if he knows if my pain

is from fibromyalgia or stills  - or really if it makes a difference - Pain is

Pain.  Already missed work the last 2 days - probably today too.

Thanx for listening

Tina

Sent from Yahoo! Mail on Android

[Guest guest]

Been up all nite in agony.  My dr. doubled my dosage of lyrica - I don't know if

that will make a difference.  I can't understand how or if he knows if my pain

is from fibromyalgia or stills  - or really if it makes a difference - Pain is

Pain.  Already missed work the last 2 days - probably today too.

Thanx for listening

Tina

Sent from Yahoo! Mail on Android

[Guest guest]

Been up all nite in agony.  My dr. doubled my dosage of lyrica - I don't know if

that will make a difference.  I can't understand how or if he knows if my pain

is from fibromyalgia or stills  - or really if it makes a difference - Pain is

Pain.  Already missed work the last 2 days - probably today too.

Thanx for listening

Tina

Sent from Yahoo! Mail on Android