Re: NEED ADVICE

March 26, 2012

I wouldn't get too worried about what your Dr thinks, I keep the Journal

for two reasons. The first is to let them see that I am not abusing the

medication, which you are not either. My second purpose was that if they

ever noticed I was going through the meds more frequently I'd like them to

be aware of it as I have no desire to become hooked on this stuff. Granted,

I am on as strong of pain meds as one can get. I have roxicodone 15mg

(instant release for sharp pain that usually works)....OxyContin 40mg that

I generally only use in the winter and Dilaudid for my headaches. It took

them 6 years to give me a script for Dilaudid but that has kept me out of

the resort for headaches, which are indescribable and far beyond any level

of pain anyone should ever have to deal with!!! Considering I was

hospitalized 35 times in a shade over 5 years for headaches alone will give

you n idea of how bad they are. Smashing my head as hard as I can off of a

block wall actually feels better than the pain. the pain is also not like

a regular headache, as it is on top of and right behind my eyes...it

actually feels as if something is ramming my eyes out of my skull, yet

after more than a dozen MRI/MRA/Cat Scans/EEC's and the like and three

separate Neuro Opthomologists (spelling??) no one can figure out why, but

it started the first time I got hit with the fluctuating fevers and has

never left.

I was down at Jefferson University for 13 days (hospitalized) under the

care of Dr. Wm Young (OUTSTANDING!!!!) and came out with a diagnosis of

" New Daily Persistent Headache " . Joy oh ******** JOY! I am lucky if I can

go two days in a row without a headache, but I have become pretty used to

them and only have to take the pills when they get to the point that I can

no longer stand them. I also get double/quadruple vision, things appear to

be moving that aren't, etc..... It sure as hell is not fun. The worst part

is that I can't predict nor stop them no matter what. I tried the water

cure and numerous dietary changes to no avail. I am pretty much going to

have to deal with them until they spread my ashes from my boat on the

Susquehanna River over my favorite area. LOL.

Being that you are already on some form of a pain med, I highly doubt

that your Dr. wouldn't work with you to get you the most effective

treatment for you. Best of luck, Kirk.

> **

>

> Thank you, Kirk. I have been keeping a journal...just for the last two

> weeks, but I have been keeping one. I will highlight go through it and

> highlight each time I had to take a lortab which I only think is about 10

> or

> so, but that's just when the pain is so intense I just can't stand it any

> longer. I HATE taking them, and I have told my doctor that on more than

> one

> occassion. I don't think he is concerned about me taking them too often. I

> guess there is just a part of me that. Feels like I am doing something

> wrong

> asking for pain meds, but I do have to do something...I just can't keep

> going on like this...I won't keep going if I do. Thank you for posting

> about

> the journal. I think I will continue doing it. It's a good idea.

>

> April

>

> Sent from my Verizon Wireless Phone

>

> Re: need advice

>

> April, I (and many others on this list) have been in your shoes, and many

> still are. I feel the most important thing is to be up front and honest

> with your Dr.....which you should be all of the time regardless. I have

> come across some Dr's who will not issue pain meds, and I don't argue as I

> can get them from either my PCP or my Pain Specialist.

> So long as you are up front and honest, you should not have much of a

> problem. One thing I found to be re-assuring to all of my Dr's was to keep

> a journal of when I took pain med(s) and the reason. Once they saw a

> pattern where I wasn't relying on them every hour of every day they no

> longer have any questions. I average a refill every 3 months....a little

> closer to 4 in the summer and closer to 2 in the winter between refills,

> and that has been consistent for 8 years.

> IF you have a Dr that will not issue pain meds no matter what than I

> advise you to find another Dr or see a pain management specialist. They

> most likely are going to start you off with the lightest duty med that they

> feel they can and will adjust until both you and the Dr are satisfied. that

> can be a tough road to be on but it will eventually get you where you need

> to be.

> Good luck, Kirk.

>

> > **

> >

> > I would like advice from anyone and everyone. I am goin to the doctor

> > Thursday, my primary. I want to ask for pain medicine, but I am not sure

> > how to ask exactly. I don't have a constant pain med I take daily but I

> > definately need something. I have a plethera of conditions that cause a

> > great deal of pain and OTC options have run their coarse. On a rare

> > occassion asprin still helps a little for some headaches. Stills causes

> > joint pain, but that is much better since I have been on the MTX

> injections

> > instead of the pills. I also take Kineret. I also have nerve pain from a

> > pinched nerve in my hip. I have migraines. I have fybro. I have something

> > wrong with my neck, upper spine and lumbar spine. There is also something

> > wrong with my left hip that I think is different from the pinched nerve.

> I

> > plan on bringing all these things up with my doctor and telling him he

> MUST

> > address these issues AND my pain. I do see a nuerologist for the

> migraines,

> > and he is just starting to delve into the nerve issues. But I am just not

> > sure how to address the pain med issue. He gave me lortab acouple weeks

> ago

> > when my back gave out. So bad I could not walk, but it was just to treat

> > the " acute " symptoms. I can suck it up and deal with the pain better than

> > just about anybody I know, but it is more than I can bare anymore. I do

> not

> > want something that makes me loopy. I still want to work. I need to work,

> > and I feel like I can...if I can keep my pain under control. I don't want

> > something that is addictive. My kidneys are not filtering properly. That

> > has been showing up on my bloodwork recently, so that has to be taken

> into

> > account, too. I plan to ask my RD about that on my next visit as I don't

> > know how bad theyn are, just that they aren't working right. My primary

> > doctor said due to the kidneys I should probably stop taking my mobic. He

> > was concerned about that affecting my arthritis symptoms, though. I just

> > stopped to see what happened and did not notice any difference at all

> after

> > a week and a half, so I don't really see any point in taking the Mobic.

> >

> > April

> >

> > PS

> >

> > I'm the one with the weird messed up emails, so my respones to the group

> > will be from my raincoin@... address...sorry.

> >

>

> --

> Everything in life sucks except things that should!

>

March 27, 2012

Hi April with the messed up emails,

Glad that is all straightened out for you.

What is hard is having the confidence to stand up to the doctors sometimes. They

are authority figures and we make them high up in our minds to the point that we

can get intimidated. Also we are afraid of that ever stomach stabbing feeling of

rejection and how to defend ourselves if this or that which we had anticipated

is not what the doctorâ€™s answer is.

There are a couple of ways you can handle it depending on your personality and

how you communicate. For me, I am much better putting my thoughts down in

writing. I donâ€™t do as well putting my thoughts into words and speaking them.

Iâ€™ve written a letter or in notes form of my ideas and handed it to the doctor

to read to himself and then had a conversation about it.

Iâ€™ve also brought my list, rehearsed of course, to the doctor with what I

wanted to say and what Iâ€™d say if the doctor said certain things about how

Iâ€™d respond. I read off my list to the doctor with real feelings about how my

lifestyle is affected by the pain. What the limitations are in my life from

pain. I creatively write what the pain feels like and where it is located, how

long it lasts, how often I get it.

It helps to be prepared either way and gather your thoughts ahead of time so you

can be effective in getting a doctor who does not know you, get to have some

idea of you as a person and what your personal life is like and how it is

affected by your symptoms. You can then say, I should not and do not deserve

this pain, and I will be needing something that will help me live a better

quality of life as I cannot go on like this much longer. Let the doctor know how

discouraging it is and depressing and how your outlook has changed for the worse

and how you are loosing hope if that is how you feel.

Usually these are all normal parts of having pain. For me it is also so

distracting that I am very tired out form focusing on the pain. It begins to

rule my life and I should run my life.

What ever works best for you April. Iâ€™m only here to offer what has helped me

in the past and want to see you have help as we all deserve better quality of

life than with so much pain.

Take care,

Let me know the outcome,

From: April

Sent: Sunday, March 25, 2012 8:20 PM

To: Stillsdisease

Subject: need advice

I would like advice from anyone and everyone. I am goin to the doctor Thursday,

my primary. I want to ask for pain medicine, but I am not sure how to ask

exactly. I don't have a constant pain med I take daily but I definately need

something. I have a plethera of conditions that cause a great deal of pain and

OTC options have run their coarse. On a rare occassion asprin still helps a

little for some headaches. Stills causes joint pain, but that is much better

since I have been on the MTX injections instead of the pills. I also take

Kineret. I also have nerve pain from a pinched nerve in my hip. I have

migraines. I have fybro. I have something wrong with my neck, upper spine and

lumbar spine. There is also something wrong with my left hip that I think is

different from the pinched nerve. I plan on bringing all these things up with my

doctor and telling him he MUST address these issues AND my pain. I do see a

nuerologist for the migraines, and he is just starting to delve into the nerve

issues. But I am just not sure how to address the pain med issue. He gave me

lortab acouple weeks ago when my back gave out. So bad I could not walk, but it

was just to treat the " acute " symptoms. I can suck it up and deal with the pain

better than just about anybody I know, but it is more than I can bare anymore. I

do not want something that makes me loopy. I still want to work. I need to work,

and I feel like I can...if I can keep my pain under control. I don't want

something that is addictive. My kidneys are not filtering properly. That has

been showing up on my bloodwork recently, so that has to be taken into account,

too. I plan to ask my RD about that on my next visit as I don't know how bad

theyn are, just that they aren't working right. My primary doctor said due to

the kidneys I should probably stop taking my mobic. He was concerned about that

affecting my arthritis symptoms, though. I just stopped to see what happened and

did not notice any difference at all after a week and a half, so I don't really

see any point in taking the Mobic.

April

PS

I'm the one with the weird messed up emails, so my respones to the group will be

from my mailto:raincoin%40sktc.net address...sorry.

March 27, 2012