Pain Meds

[Guest guest]

ive lived with the pain for 15 years and its become kind of an excepted

thing..more of an annoyance than anything...except when it keeps u

beddridden...ive found that aspirin(if u can tolerate it)...is about as good as

anything and its cheap with no side-effects...if, like i said, u can tolerate

it.....frank carnes

Kathe Sabetzadeh <lv2ryd@...> wrote: Hi Pamela:

Right now I am taking Ultram ER 300 mg. once daily,

having changed from Ultracet which I was taking up to

four to six a day. The Ultram takes the edge off the

pain, but does not take it away. I have given up on

thinking that I will ever be totally painfree again -

as long as I can get enough relief so I can do the

things I need for my family and home, I am good. Pain

of a certain degree is something I think we have to

learn to live with, unfortunately. Take care -

Kathe in CA

--- Pamela Price <p_price42@...> wrote:

> Hi, I was wondering what you all take for pain that

> works? I take 3 lortab a day and it really doen't

> help much at all. Is there something else out there

> which would help more?

>

> Pam

>

>

> ---------------------------------

> Get your email and see which of your friends are

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[Guest guest]

I have been on Tramadol for 3 weeks and developed an addiction. I didn't know

it while I was

on the medicine, but for the following two weeks after stopping the medicine - I

had severe

withdrawl symptoms. Nausea, mood changes, shaky, stomach pain, body aches worse

than

the flu. I was scared but vowed never to take tramadol again. The dangers of

this drug are

very real and it is kept hidden from the public. I threw out every last pill.

Search the net

and you will see just how many people have experienced this addiction. I

believe this

drug should be pulled off the market. Check this out:

http://www.medhelp.org/forums/addiction/messages/30676a.html

Have a good day -------------

Dawn

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[Guest guest]

Most of the pain meds are addicting. Like I said I have been taking the lortab

for two years and YES I am addicted to them. If I take more than the 3 a day

then I run out before it's time to get them filled again and I experience all

the symptoms you described here. I hate the fact I let myself get addicted to

them. Not me at all! But I also remember all the pain I felt before I started

taking them. Although I still experience pain all the time, at least I can take

care of my family.

My husband left me 6 weeks ago so now I am here by myself raising identical

twin girls with Down Syndrome. I am working 3 part time jobs trying to pay all

the bills the jerk left me with. I don't even know where he is! He won't tell

me.

I take Plaquenil, prednisone, Effexor, Ativan and Lortab daily to make it

through the day. Plus I go get cortisone shots in my shoulders whenever I can. I

do whatever I have to do so I can work and take care of my daughters. They are

low functioning and I have to do most everything for them.

Pam

ferretown@... wrote:

I have been on Tramadol for 3 weeks and developed an addiction. I didn't know it

while I was

on the medicine, but for the following two weeks after stopping the medicine - I

had severe

withdrawl symptoms. Nausea, mood changes, shaky, stomach pain, body aches worse

than

the flu. I was scared but vowed never to take tramadol again. The dangers of

this drug are

very real and it is kept hidden from the public. I threw out every last pill.

Search the net

and you will see just how many people have experienced this addiction. I believe

this

drug should be pulled off the market. Check this out:

http://www.medhelp.org/forums/addiction/messages/30676a.html

Have a good day -------------

Dawn

__________________________________________________________

Check out the new AOL. Most comprehensive set of free safety and security tools,

free access to millions of high-quality videos from across the web, free AOL

Mail and more.

[Guest guest]

Not every patient needs something MORE than " candy " . I have been using

ultram since I was dx'd and it works well for me. There are a few very rare

occasions that I use Darvocet...and that is the strongest thing I have ever

taken.

This is even after having major surgery.

So many docs get burned by patients seeking drugs..I can understand where

they are coming from. They are also concerned if a patient is going to

multiple docs and getting multiple meds.

I had a rheummy that flat out refused to prescribe anything more than

ultram. He had been burned in Houston. So I went to my Internist. He was a

bit

surprised when he reviewed my chart. I had been going to the same clinic for

5 yrs or more. I had filled 2 bottles of 30 darvocet pills in 3 yrs!!!

Toni

[Guest guest]

When I was having hip pain last year, my rheumy prescribed Tramadol. I

usually just took it at bedtime, because the pain was worse when I was

trying to go to sleep. I did not get addicted to it at all. I still

have lots of pills left, but since I don't need them now, I don't take

them. Different meds affect different individuals in totally different

ways. If we have bad side effects, we can always switch to another med.

It is no reason to pull a drug off the market, in my opinion.

Sue

On Friday, November 3, 2006, at 04:16 PM, ferretown@... wrote:

>

> I have been on Tramadol for 3 weeks and developed an addiction. I

> didn't know it while I was

> on the medicine, but for the following two weeks after stopping the

> medicine - I had severe

> withdrawl symptoms. Nausea, mood changes, shaky, stomach pain, body

> aches worse than

> the flu. I was scared but vowed never to take tramadol again. The

> dangers of this drug are

> very real and it is kept hidden from the public. I threw out every

> last pill. Search the net

> and you will see just how many people have experienced this addiction.

> I believe this

> drug should be pulled off the market. Check this out:

[Guest guest]

Hi Pam and group ,

It is difficult enough dealing with a chronic painful condition. I respect the

challenge you face

by also taking care of your daughters without your husband. My heart goes out

to you. You

are doing what you can by balancing your meds in order to keep you functioning.

In my case, Tramadol wasn't very helpful for my pain and I stopped it, and

realized the withdrawl.

So it wasn't worth it for me to continue. Fortunately Lortab is helping you,

despite the dependence. Often,

it's a trade off. I've been on and off of so many meds due to severe side

affects and I'm running out of

options. My symptoms are not under good control these days. I want to try

placquenil again. First time I

had bad stomach pains and nausea after taking it for 2 days, then quit.

Currently I'm on Enbrel , but had to stop the Methotrexate. Ohh well - Back to

the drawing board.

I'm ready to go back to good ol prednisone.

You have found a combination to keep you functioning and that's great .

Their must be some hidden gifts in the face of adversity in this life. Wish you

all the best.

Dawn

Re: [ ] Pain Meds

Most of the pain meds are addicting. Like I said I have been taking the lortab

for two years and YES I am addicted to them. If I take more than the 3 a day

then I run out before it's time to get them filled again and I experience all

the symptoms you described here. I hate the fact I let myself get addicted to

them. Not me at all! But I also remember all the pain I felt before I started

taking them. Although I still experience pain all the time, at least I can take

care of my family.

My husband left me 6 weeks ago so now I am here by myself raising identical twin

girls with Down Syndrome. I am working 3 part time jobs trying to pay all the

bills the jerk left me with. I don't even know where he is! He won't tell me.

I take Plaquenil, prednisone, Effexor, Ativan and Lortab daily to make it

through the day. Plus I go get cortisone shots in my shoulders whenever I can. I

do whatever I have to do so I can work and take care of my daughters. They are

low functioning and I have to do most everything for them.

Pam

ferretown@... wrote:

I have been on Tramadol for 3 weeks and developed an addiction. I didn't know it

while I was

on the medicine, but for the following two weeks after stopping the medicine - I

had severe

withdrawl symptoms. Nausea, mood changes, shaky, stomach pain, body aches worse

than

the flu. I was scared but vowed never to take tramadol again. The dangers of

this drug are

very real and it is kept hidden from the public. I threw out every last pill.

Search the net

and you will see just how many people have experienced this addiction. I believe

this

drug should be pulled off the market. Check this out:

http://www.medhelp.org/forums/addiction/messages/30676a.html

Have a good day -------------

Dawn

__________________________________________________________

Check out the new AOL. Most comprehensive set of free safety and security tools,

free access to millions of high-quality videos from across the web, free AOL

Mail and more.

[Guest guest]

Hi Sua and all,

Like you, I mainly take pain pills at bedtime since that's when I

need them the most. When I injured my piri muscle I started taking

Tramadol more often. Now that it's better I don't take it as much. I

still have left over Vicodin in my frig from previous tooth extra.

It's there since I don't need them now. I agree that meds effect

each person differently.

Debbie L

>

> When I was having hip pain last year, my rheumy prescribed

Tramadol. I

> usually just took it at bedtime, because the pain was worse when I

was

> trying to go to sleep. I did not get addicted to it at all. I

still

> have lots of pills left, but since I don't need them now, I don't

take

> them. Different meds affect different individuals in totally

different

> ways. If we have bad side effects, we can always switch to another

med.

> It is no reason to pull a drug off the market, in my opinion.

>

> Sue

>

>

[Guest guest]

My doctor recently put me on oxycodone at night. My shoulders have

been very painful preventing me from sleeping through the night. I was

waking up multiple times to change my position. My doctor explained to

me that if I wasn't sleeping well I wasn't producing seratonin which

in turn would make me feel worse. He knows I have an aversion to pain

medication but he really felt I needed to take it. I think a good

doctor who understands RA understands the need for pain medications at

times.

in NY

--- In , Alvarez <bureau97504@...>

wrote:

>

> Joy: I would find another rheumy if they do not believe in pain

meds. No one should have to suffer. Mine gives me darvocet which

helps but does not take away all the pain. Maybe a pain management

specialist is the answer. None of us like having to take pain meds

but if we want to be able to function daily, it is a fact of life.

>

> Just my two cents for what it is worth. Hope everyone is having a

pain free day

>

> Hugs

> Pat in So Ore.

>

[Guest guest]

I take Tramadol with Excedrin Tension Headache formula. The Tylenol

and caffeine help the pain medicine to be more effective.

Regular Excedrin contains aspirin in addition to Tylenol and caffeine,

and of course, I can't take that with other NSAIDS.

Lissa

> >

> > I have been on Tramadol for 3 weeks and developed an addiction. I

> > didn't know it while I was

> > on the medicine, but for the following two weeks after stopping the

> > medicine - I had severe

> > withdrawl symptoms. Nausea, mood changes, shaky, stomach pain, body

> > aches worse than

> > the flu. I was scared but vowed never to take tramadol again. The

> > dangers of this drug are

> > very real and it is kept hidden from the public. I threw out every

> > last pill. Search the net

> > and you will see just how many people have experienced this

addiction.

> > I believe this

> > drug should be pulled off the market. Check this out:

>

[Guest guest]

, Is there a pain management dr. in your area? I would search one out..I

see a pain management dr. and am able to discuss my pain with him without

feeling like I have been striken with some plague..I take ultracet for my pain

and have been offered something stronger for it but as long as I can manage with

the ultracet that is what I plan on doing..There are times too that I feel

something stronger would allow me to do more with my family..

I hope you will be able to find someone who will be willing to listen to you

and be compassionate..I guess I dont need to start my soap box about dr's today

but I really feel so many of them lack compassion, concern and just plain don't

care with their patients..I do know that there are some that do but sometimes it

feels those are very hard to find.

I wish you a blessed Christmas!!

Vickey

lbschroeder <lbschroeder@...> wrote:

When I was first diagnosed with PA, my pain was managable. But as time

went on, I used Tylenol #3 or Hydrocodone, for times when I wanted to shop with

my daughters, sight see or any special occasion. I spoke with my rheumie and

told him I did not understand how people got a " supposed high or buzz " from

these meds and he told me, that if you truly need them, then you do not have

that feeling. All they did was allow me a few hours of pain reduced time. I

never, ever took them without needing them.

Now I have switched rheumies, (insurance payment and oh, so regret it) and you

would think I was the world's largest drug seller when I asked for hydrocodone.

Made me feel dirty, cheap and horrible. I am going to tough it out, but realize

that my life will be greatly inhibited from now on. Do not know what they heck

is going on, but doctors are treating patients with pain like lepers. I truly

believe that my life and the enjoyment of it, will be curtailed. I can live it,

but not do the things I so enjoyed.

Interesting thread we have had going on about pain meds. Anyone else being

treated like a leper for asking for some " help? "

in Poulsbo, Wa.

[Guest guest]

Dear ,

I could have written your email about 6 years ago. At the time, I was at

the end of my rope dealing with chronic facial pain due to arthritis in my

jaw joint, constant fibromyalgia, and undiagnosed PA and RA. I had

undergone arthroscopic surgery on my jaw to see what the problem was and was

told by my surgeon that it should help tremendously with the pain. Wrong!

The complete opposite was true. Once the nerve block wore off, my pain

levels increased 10 fold and after one refill even the surgeon didn’t want

to refill my pain medication. So I called my family doctor who I had seen

for over 10 years and had a great relationship. All at once, he made me

feel like I was selling my drugs on the side and forming gangs or something.

I remember at one point thinking, I can’t live like this and really did

consider suicide. Luckily, I have a husband and two children to think of and

they kept me focused on fighting to find some help. Now my situation was

worse than yours it sounds like, but chronic pain can build up and slowly or

quickly depending on your reserves, deplete your strength, your joy for

life, your coping skills, and your reasons for living.

My advice is not to let it get to that point and to find a solution now to

your problem. I don’t know where you live or if you have a pain clinic in

your area, but going to one really did save my life. I have to admit that

I felt intimidated and was worried they too would think I was a drug seeker.

I knew they saw that type of person constantly, and felt like they didn’t

have enough “proof” to believe I was really in pain. That issue never did

come up. It did take some time before we found the right dosage of pain

meds, but once we did get it regulated, I could cope and find some joy in

living again. I’ve been with the same clinic now for over 6 years and I’ve

seen two doctors the whole time. Both of them have been just excellent, and

what is great about them is they actually understand pain. They never did

doubt me, since I brought in all my X-rays and medical records. I also have

always been willing to work with them on anything they have suggested, from

biofeedback, visualization therapy, massage therapy, psychologist visits,

and any new medication they thought might lower my pain levels. When

something didn’t work, they didn’t pressure me to keep trying it, they just

found another solution.

Since the FDA has so many guidelines and rules the average doctor is worried

to write that much pain medication for any of their patients, at least that’

s how I’ve found it. They might right a prescription for narcotics

occasionally, but they really have a hard time writing it on a constant

basis. Pain clinic even though they are closely monitored and have a lot of

rules and regulations, have more freedom than the average family doctor.

Rheumatologists are really difficult on providing constant pain meds, since

they have so many patients in constant pain. You would think they would be

more understanding and more willing to work with you, but the ones I’ve met

have a “you can live with it” attitude. Where pain specialists, just

understand pain and how it develops and all of the social and physical

problems it can cause. They also understand the dangers in not treating

pain, especially constant pain. People dealing with constant or chronic

pain have more health problems, higher divorce, unemployment issues,

suicides rates, and are more accident prone, just to name a few things we

could all live without.

It might take you some time to find a pain doctor you like, just like any

doctor. Also the staff is really important as well because if you can’t get

in to see your doctor in an emergency then you might as well not even have a

doctor. A good medical staff can really make the whole process easier and

normally there is someone there who can write prescriptions on the doctor’s

behalf if he is out of town or something. I do have to see the doctor every

month to refill my prescriptions, but it’s a small price to pay for

controlling my pain. I hope you can find someone out there to help you.

Just don’t “deal” with your pain if you can get some relief. Studies also

show that the more pain we endure, the more pain our body just gets used to

dishing out. From what I have read, people actually do develop more pain

pathways, when pain is constant and then each time the pain level only

increases. So it can be a really bad situation if you go untreated like so

may people do.

Unfortunately, drug abuse is constant in our society and those people tend

to give any narcotic user a bad name. Finding a doctor who understands the

difference between the two groups of people is critical if you have constant

pain. Good luck and let me know if I can help in anyway ok? Take care and

don’t give up. There is help out there; you just have to keep on searching

until you find it.

Hang in there, Fran

[Guest guest]

I found that the best option for me to control my pain was to find a

pain clinic and become a patient there. Currently, my arthritis pain

is managed by: 1) naproxen sodium (Aleve) 1500 mg daily, 2) physical

therapy twice weekly followed by, 3) massage therapy twice weekly,

and 4) diathermy (moist heat and electrical stimulation to inflamed

areas), 5) intermittent Cortisone injections into various painful

and inflamed joints (usually wrists/hands, ankles/feet) as often as

I am allowed (they don't like to do cortisone injections too often

as the steroids can make the bone deteriorate faster), 6)

intermittent nerve block injections (usually to the lumbosacral and

sciatic nerve area), and 7) wearing between 1-3 Lidocaine patches to

painful areas as needed.

Prior to my hip replacement, I was on all of the above PLUS I was

taking 2-3 Ultracet a day, and when even that didn't help, I was

adding in an extra 800 mg a day of Ibuprofen. (The extra Ibuprofen

was NOT recommended by the docs, but the pain was so bad. I did it

on my own, and DON'T recommend anyone else do so. The hip

replacement was a god-send.....since then, I have not had to use any

Ultracet at all or take any extra Ibuprofen.)

[Editor's Note: I am concerned that with all you are doing/taking, you do not

seem to be taking anything to stem the progression of the disease. Has your

rheumatologist not recommended Enbrel, Humira, Arava, etc.? Kathy F.]

[Guest guest]

hi linda, vicky.

tylenol 3 x3 got me through christmas shopping yesterday, lunch out and

taking dog to park to run. i reallllly am hurting now but it was worth it. just

got power back on, and i know of a pain center in oly. but would probably be to

far for you to drive. let me know if you want info. hope all is ok and keeping

warm. and all power is restored. awful weekend for us. stay safe. my work just

got power on yesterday (sunday) so i have to prepare for a busy holiday week.

(please lets all be nice to the grocery clerks this week. no matter how your day

is going.) and remember to treat all down traffic lights a a 4 way stop.

) casey

Vickey Arnold <smilin4dannme2002@...> wrote:

, Is there a pain management dr. in your area? I would search one

out..I see a pain management dr. and am able to discuss my pain with him without

feeling like I have been striken with some plague..I take ultracet for my pain

and have been offered something stronger for it but as long as I can manage with

the ultracet that is what I plan on doing..There are times too that I feel

something stronger would allow me to do more with my family..

I hope you will be able to find someone who will be willing to listen to you and

be compassionate..I guess I dont need to start my soap box about dr's today but

I really feel so many of them lack compassion, concern and just plain don't care

with their patients..I do know that there are some that do but sometimes it

feels those are very hard to find.

I wish you a blessed Christmas!!

Vickey

lbschroeder <lbschroeder@...> wrote:

When I was first diagnosed with PA, my pain was managable. But as time went on,

I used Tylenol #3 or Hydrocodone, for times when I wanted to shop with my

daughters, sight see or any special occasion. I spoke with my rheumie and told

him I did not understand how people got a " supposed high or buzz " from these

meds and he told me, that if you truly need them, then you do not have that

feeling. All they did was allow me a few hours of pain reduced time. I never,

ever took them without needing them.

Now I have switched rheumies, (insurance payment and oh, so regret it) and you

would think I was the world's largest drug seller when I asked for hydrocodone.

Made me feel dirty, cheap and horrible. I am going to tough it out, but realize

that my life will be greatly inhibited from now on. Do not know what they heck

is going on, but doctors are treating patients with pain like lepers. I truly

believe that my life and the enjoyment of it, will be curtailed. I can live it,

but not do the things I so enjoyed.

Interesting thread we have had going on about pain meds. Anyone else being

treated like a leper for asking for some " help? "

in Poulsbo, Wa.

[Guest guest]

Pearl- I can only imagine your problems. BTW- is

there a way you can have your meds mailed to you

instead? Best of Luck, Greg

--- Pearl <doolie@...> wrote:

> Fran, that was well said. Oh do i understand, i am

> luck now and do have an

> understanding GP doctor, this why i do not go to

> Rummy's in my area, of

> East Tn. (hillbilly heroin) Pain meds. are so

> controlled here, due to

> extreme abuse. Rummy's do not give them. I also

> go once a month to

> doctor to monitor the meds. I take pain patches as

> my tummy is burned out

> from all the NASADS.

>

> My doctor is cool most of the time, but the drugest

> and people at the found

> treat me like

> s--t, the lowest of the low. They refer to my meds.

> and dope and nerve

> pills. I got a prescription on 12.13.06, but my

> last was filled

> 11.20.06. I went on the 18 and they did not want to

> fill them 2 days

> early, and Nov. had 31 days. The owner did fill

> them. but i got to stand

> up front and be looked at for a 1/2 hour. I live in

> a rural area and do

> not go to town but once a week if i can help it. My

> Enbrel was due o

> 12.13.06.

>

> I get so tired that people do not get it, they say

> your too young to be in

> pain, or well it will not kill you.

>

> In the USA if it is not a terminal illness, they do

> not care how much pain

> you are in.

>

> We go back and forth with the attitude . of no one

> should be in pain to IT

> will give you strength. It is you punishment.

>

> It is so funny if you needs meds. you can not get

> them, but street people

> get stronger drugs then i would take all the time.

>

> I hate taking the drugs, but i like to walk and get

> a little done.

>

> You have to fight for your self and everyone else

> who goes to se them later.

>

> One time i was threatened with, we will have to

> send you to a pain clinic

> were people like you get treatment. I told them to

> go for it and maybe

> they will help me. I was taken more seriously right

> after that.

>

> Do not give up

> Never give up

> We have a disease to fight and must continue for the

> others' who will follow.

>

> Until there is a cure.

>

> Pearl (I am back) I can type again

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

[Editor's Note: I am concerned that with all you are doing/taking,

you do not seem to be taking anything to stem the progression of the

disease. Has your rheumatologist not recommended Enbrel, Humira,

Arava, etc.? Kathy F.]

I am currently on 15 mg Methotrexate weekly, and 50 mg Enbrel weekly.

Didn't feel those were pertinent to the discussion about pain meds, as

they are DMARDs, technically, and as you said....the main purpose is

to stop the progression of the disease. (Pain relief related to that

would definitely be a plus though!)

Since the hip replacement in June, the Enbrel just does not seem to be

as effective. My feet, ankles, hands, wrists, and sacroiliac area have

been much worse particularly over the past month and a half or so. I

think it's because I had to stop taking the DMARD's for nearly 2

months (a month preop and a month postop). Someone (don't remember if

it was you or Betz or who) had posted that going on and off DMARDs was

a bad thing to do, as it was hard on the body, and I can attest to

that....as it does seem to be less effective now. The rheumatologist

has mentioned the possibility of switching to Humira or Remicade once

or twice, but nothing has come of that so far. I will admit that the

cost of the Enbrel has been a BIG problem for me. I tried to apply to

the Patient Access Network the manufacturer referred me to, but they

look at pretax income, and mine is too high to qualify for help paying

for the meds, they say. (It's a pet peeve of mine. Why do these

programs look at pretax income??!! Nobody gets to take home their

pretax salary, don't they realize that? For example, by the time my

family health insurance, Medicare, Social Security, flexible spending

account, retirement plan/pension, and state and federal taxes are

deducted, I bring home only about half of what I initially earned!)

Happy Holidays to you

Wanda

[Guest guest]

Here's my 2 cents. If you have been on Humira for 5 weeks and are continuing to

suffer, and experiencing a level of pain that is uncomfortable enough for you to

call and ask for some interim pain medication, your rheumy should be listening

to you. 5 weeks seems like a long time not to experience some relief. I just

saw my doctor yesterday and we discussed my particular pain level and the fact

that at times my pain meds aren't effective, so he prescribed something a

little stronger for those times I have breakthrough pain. He also offers

several alternatives of medicines - I take Percocet for my pain, so he

prescribed a slightly higher dose for a short period, and then prescribed Ultram

ER to try as well. I am not a huge fan of prednisone. I have been on it for

several years and the side effects stink - however, when I have a bad flare

there is no alternative but to up the dose (since I'm still waiting to get on a

different PA drug). I find now that even with the

higher dose, I'm not getting relief. I am trying to get on Medicaid so I can

go back on Enbrel, which worked well for me. I experienced relief almost right

away with the Enbrel (my energy level improved right away, as well as the

inflammation) - but everyone is different. I'm not familiar with Humira but I

would think that if you had to wait months for the drug to kick in, your doctor

should be willing to prescribe something to get you through that period.

Perhaps you can educate me regarding Humira - do you have to be tested for liver

changes. If you're on Humira, does it interact with other drugs that would

prohibit your doctor from prescribing a pain med? Is Humira a drug that is more

effective on RA? I haven't seen any literature about Humira and PA. I was on

methotrexate first but immediately had liver changes so that was stopped

immediately - then I went on the Enbrel. For the time being, I also take over

the counter ibuprofen (800 mg 3 x a day) for

inflammation and that truly gives me relief. I have never found that a muscle

relaxer relieves the painful symptoms of my PA - my joints, fingers, hands, etc.

are tremendously inflammed - but it's not really muscle pain. I think we would

all agree that if you feel that your doctor does not understand you, your needs,

or that you don't seem to communicate well - then perhaps you should find

another doctor. I'm not suggesting that your doctor isn't a great

rheumatologist - but if you can't get your point across, or there's a

personality conflict, or you don't think he's " hearing " you, then maybe it's

not a good fit. This is such a frustrating disease - and I know physicians

don't want their patients to get dependent on drugs - however, you need a good

relationship with your doctor (you trust him, he trusts you). I would be very

unhappy if my doctor cut my medications down when my pain level was elevated.

There are alot of people out there that just seek drugs and

doctors see alot of that - but when you suffer from PA, the pain is real. If

you can't break the pain cycle, it's just miserable. And any doctor I have ever

seen has explained that breaking the pain cycle is key.

Again, this is just my 2 cents. I care deeply about all of us that suffer

from this disease, and respect that everyone has their own opinions and

experiences as to how they manage. I just don't think anyone should suffer from

severe pain when there are other options out there. I hope that you can work

this out with your doctor. If nothing else, we belong to a wonderful forum.

It's a learning experience with alot of positive feedback. I hope that if

nothing else you know that we are listening and that we all want to help each

other.

One other option - have you ever considered biofeedback, relaxation therapy.

I find this to be very helpful. Anxiety does seem to intensify pain.

I will keep you in my thoughts and prayers.

God Bless,

Kathy M.

Alison <alishushu@...> wrote:

I don't seem to be able to make my doctor understand me...

5 weeks ago, i started Humira. it has not kicked in full steam at

this point and i have been trying to make my dr understand that i

feel like i need something steady in my system for pain, at least

until the humira has a chance to really work. other than humira, i

take ultracet which was originally prescribed by my gp for " break

through " pain... in other words... to take " as needed " , NOT regularly

on a daily basis. i have called the rheummy several times and each

time he prescribes a step down treatment of prednisone...

am i wrong in wanting/needing something that is perhaps time released

that stays in my system constantly? i suffer daily from pain,

stiffness and severe fatigue and don't feel like anyone is listening

to me!!!!

i would appreciate any advice or shared experiences. if anyone is on

humira, what else are you taking? anyone on enbrel? if so, what

else are you taking? what about remicade? what about fatigue? how

do you handle that?

i know these things have been discussed here, probably many times

over... please, if you don't mind, lets talk about it again...

thanks!

alison - who is exhausted...

[Editor's Note: Alison, I'm sorry you are hurting so much. At this point, I

think your rheumy is right not to prescribe anything else. Humira is a heavy

duty and expensive medicine and I don't know how you or he will know if it is

working if, at this juncture, you are put on something additional. After the

Humira has had a real chance to take hold (two to three months), you will be in

a better position to evaluate to what degree, if any, Humira is helping. That

would be the right time to re-evaluate whether you should stay on Humira, go on

something else, take MTX in combination with Humira or perhaps add a muscle

relaxer or pain killer to your medication regimen. If you start to feel better

from Humira, you will probably find that some of the exhaustion also fades away

as will some of the pain. You are entitled to live as pain free as you can, but

I personally think it is wrong to go on two medications at once because you will

not be able to figure out which one is

working. So - I would suggest being patient a little while longer. One other

point, although I have lived with this disease for 41 years, there are times

that my medication (currently Enbrel, MTX, occasionally Soma and periodic

cortisone shots) helps me lead a reasonably good life. There are other times

when I'm in a flare and then nothing stops the pain and that includes ultracet.

The reality is that I have a chronic disease for which there is no cure and that

means that some of the time, I will live with a great deal of pain and some of

the time, I will feel pretty good. You may well need a pain killer on a daily

basis, but it is best to make that call after giving Humira a chance to work.

Kathy F.]

Kathy

---------------------------------

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[Guest guest]

Hi Carol, Having sufered from excruciating pain for many yrs I know how

you feel. When I was in such bad pain I hated taking any type of pain

med that has tylenol in it due to the problems it can cause with your

liver. My dr suggested MS Contin & that is what I have stuck with.

Before my Revision surgery ( June 8th,05 ) the pain I had was very

bad. The MS Contin worked the best for me.

Diane B

>

> Does anyone have any ideas on pain meds that would work? I'm on

> Percocet 2 tabs (don't know strength) every 4 hrs. and Neurontin 600

mg

> every 8 hrs., and it's not enough to get rid of the pain. I think

it's

> muscle spasms, but the Baclofen isn't enough to get rid of the pain

> every 6 hrs. I (just to try) took three (900 mg) Neurontin last night

> and three this AM just to see what would help. I also took 3 Percocet

> this AM to see how it would work, and it has helped the pain quite a

> bit. I am more " dozey " but it has helped the pain. I can't take

> Vicodin, makes me very sick, so need something that doesn't have

> Vicodin or Fentanyl in it. Fentanyl patch takes care of the pain, but

> makes me VERY SICK and gives me VERTIGO.

>

> Carol

>

[Guest guest]

It doesn't work tried itOn Jul 30, 2007, at 10:37 AM, <lowery@...> wrote:

Does anyone know if it is ok to take darvocet while on ldn?

vicki

[Guest guest]

This one has come up quite a bit lately so probably best to do a search

of the archives at

low dose naltrexone/messages for

darvocet. According to several people Skip says it's OK and he is an

expert in that area. I know of someone who was using both when most

people (including me) was thinking that as something which had an opiate

component it was a no-no and both were working for him. He was even

taking his evening Darvocet at the same time as his LDN!

lowery@... wrote:

> Does anyone know if it is ok to take darvocet while on ldn?

>

> vicki

[Guest guest]

,

Perhaps it's not too surprising that propoxyphene (the opioid-like

component in Darvocet) is considered by many to be a poor pain

reliever and that the effect of Darvocet might simply be due to the

tylenol component alone. Propoxyphene therefore might not have too

much of an interference with LDN at receptor sites.

Elliot

> > Does anyone know if it is ok to take darvocet while on ldn?

> >

> > vicki

>

[Guest guest]

Elliot,

Yep, have since read things to that effect. I've never used it.

Elliot wrote:

> ,

>

> Perhaps it's not too surprising that propoxyphene (the opioid-like

> component in Darvocet) is considered by many to be a poor pain

> reliever and that the effect of Darvocet might simply be due to the

> tylenol component alone. Propoxyphene therefore might not have too

> much of an interference with LDN at receptor sites.

>

> Elliot

>

[Guest guest]

I wouldn't try to get Vicodin through any back channels, it's sketchy, could be

counterfeit or contaminated, plus it's illegal. I'd speak to the new rheum

about alternate opiates for pain management and a taper plan for narcotics as

the new meds kick in. If he talks to the rheum about his symptoms and concerns

rather than taking a " I want hydrocodone " track, he's more likely to find the

doc to be receptive. There are plenty of long-acting narcotics that would be

alternatives like the fentnyl (sp?) patch or maybe something like Ultram or

Soma.

[ ] Pain meds

Hi,

I haven't written in a long time because I've been sick, but a friend of

mine needs help and I told him I'd ask the list.

He moved and had to change his rheum. The problem is that

the new rheum is very anti pain meds and my friend had been taking a

substantial amount of hydrododone because he's unable to take any

rheum meds for the last several months because of an infection. He hopes

to go off of it (the hydro) once he gets back on rheum meds, but for now

he's in a lot of pain, and hydrocodone is the only thing that takes the

edge off.

He even goes to a pain doctor but the meds that the doc has offered

haven't helped. And my friend can't even bring up hydrocodone anymore

because it's obvious the pain doc thinks he's a drug seeker. (Ha, like

that hasn't happened to a lot of us!)

Do any of you have any ideas? Alternative ways to get hydrocodone

maybe? Any extras of your own that you'd be willing to part with?

(A long shot, I know, for a host of reasons, but hey, I figured

I'd ask )

Since this is a very sensitive subject, pls contact me offlist

at kyrikcomcast (DOT) net.

Thx in advance,

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[Guest guest]

I agree, Kate. The safety and legal issues are big in this situation.

, maybe your friend could look for another pain management specialist?

Not an MD

> Re: [ ] Pain meds

>

> I wouldn't try to get Vicodin through any back channels, it's sketchy,

could be

> counterfeit or contaminated, plus it's illegal. I'd speak to the new

rheum about

> alternate opiates for pain management and a taper plan for narcotics as

the new

> meds kick in. If he talks to the rheum about his symptoms and concerns

rather than

> taking a " I want hydrocodone " track, he's more likely to find the doc to

be receptive.

> There are plenty of long-acting narcotics that would be alternatives like

the fentnyl

> (sp?) patch or maybe something like Ultram or Soma.

>

> [ ] Pain meds

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> Hi,

>

>

>

> I haven't written in a long time because I've been sick, but a friend of

>

> mine needs help and I told him I'd ask the list.

>

>

>

> He moved and had to change his rheum. The problem is that

>

> the new rheum is very anti pain meds and my friend had been taking a

>

> substantial amount of hydrododone because he's unable to take any

>

> rheum meds for the last several months because of an infection. He hopes

>

> to go off of it (the hydro) once he gets back on rheum meds, but for now

>

> he's in a lot of pain, and hydrocodone is the only thing that takes the

>

> edge off.

>

>

>

> He even goes to a pain doctor but the meds that the doc has offered

>

> haven't helped. And my friend can't even bring up hydrocodone anymore

>

> because it's obvious the pain doc thinks he's a drug seeker. (Ha, like

>

> that hasn't happened to a lot of us!)

>

>

>

> Do any of you have any ideas? Alternative ways to get hydrocodone

>

> maybe? Any extras of your own that you'd be willing to part with?

>

> (A long shot, I know, for a host of reasons, but hey, I figured

>

> I'd ask )

>

>

>

> Since this is a very sensitive subject, pls contact me offlist

>

> at kyrikcomcast (DOT) net.

>

>

>

> Thx in advance,

>

>

>

>

[Guest guest]

,

I would advise your friend to find a new rheumatologist as well as pain

management doctor. Does he see a therapist?

Where are you located?

©x© Kami ©x©

[ ] Pain meds

Hi,

I haven't written in a long time because I've been sick, but a friend of

mine needs help and I told him I'd ask the list.

He moved and had to change his rheum. The problem is that

the new rheum is very anti pain meds and my friend had been taking a

substantial amount of hydrododone because he's unable to take any

rheum meds for the last several months because of an infection. He hopes

to go off of it (the hydro) once he gets back on rheum meds, but for now

he's in a lot of pain, and hydrocodone is the only thing that takes the

edge off.

He even goes to a pain doctor but the meds that the doc has offered

haven't helped. And my friend can't even bring up hydrocodone anymore

because it's obvious the pain doc thinks he's a drug seeker. (Ha, like

that hasn't happened to a lot of us!)

Do any of you have any ideas? Alternative ways to get hydrocodone

maybe? Any extras of your own that you'd be willing to part with?

(A long shot, I know, for a host of reasons, but hey, I figured

I'd ask )

Since this is a very sensitive subject, pls contact me offlist

at kyrik@....

Thx in advance,

[Guest guest]

Dear Pain Meds,

Knowing when and how much to use of pain meds is one of the biggest

questions we face with PA. Everyone is different in their level of pain and

it also matters where your PA is the worse as far as pain goes. My PA first

started in my jaw joints, so I had facial pain almost 24/7 and was in

miserable pain. I couldn’t work, talk on the phone, chew anything of

substance and the only relief I got was from ice or pain medication.

Finally it happened to me, I had TMJ surgery to see what was going on with

my joints and then the pain went through the roof. After only 10 days from

the surgery, my surgeon refused to refill my pain medication and my family

doctor kept referring me back to my surgeon. I found myself in pain

management and ready to almost give up. At the time, no one even knew I had

PA and had really no idea what was going on.

I have no doubt that pain management saved my life. Finding a

rheumatologist that is willing to prescribe pain meds is just amazing. Most

of them refuse to do it, and tell you the addiction is much worse than the

pain. My response to this is, “Have you ever had PA or even PA pain?”

Unless they can convince me and they haven’t yet, I know the pain is worse.

I’ve seen 7 rheumatologists before I finally got the correct diagnosis, but

in all that time pain management stuck with me and never let me down. I’ve

been with them now for over 8 years and it’s true you do have to increase

your pain meds to keep the pain under control. Developing dependence is

part of the deal with narcotics. But dependence is a big difference than

addiction, which is something most people don’t understand. Your body does

depend on the drugs and you do face the risk of becoming addicted, but if

you follow along with a managed plan, like pain management, you should be

ok. I went really slowly and started at a low amount. It has taken 8 years

to get me to the level of narcotics I’m on now. The main thing you should

think about is the pain doctors are experts at what they do. If you find a

good one, and they are just like all doctors, good and bad, they really know

what they are doing. I’m currently on a long-term narcotic and I also have

break through medication that I can use when the time-released drugs are not

enough. My doctors knew which drugs kept me from going up and down so I

never felt “high” on my meds and never experienced the lows that come along

with just 4-6 hour pain meds. The also offer other treatments besides pain

meds. I have had several injections into bad joints, tender point

injections, and spinal blocks. Vitamin supplements IV’s, counseling

treatment, biofeedback, visualization therapy and the list goes on. I am

always willing to try anything that doesn’t hurt me in the long run. One

thing I found out is if you are in severe pain, you seldom feel the pain

medication high feeling at all. The pain is so bad that it seems to be just

used up from the pain alone. Luckily, I don’t have an addictive

personality, and I’ve always gone along with my doctor and never took more

than has been prescribed.

For me now morphine works the best, but you probably aren’t to that level

yet. If perocet works for you, then I would do what I had to so you can

function the best. Since it took my doctors over 4 years to figure out

what was wrong and how to treat me, all of my joints are affected now. As

it stands now, I need both jaws replaced, both knees replaced, my toes and

fingers are in pain all the time, my spine is affected in every area, and

now my hips are acting up. Trying to survive this is all I can do, and

being dependent on my pain meds to survive is the least of my problems.

Before I got sick, I worked full time, drove, and managed to run a

household. Now I’m home all the time, I can’t drive, I use a power wheel

chair at home and a cane the rest of the time. I’m on predinsone all the

time and I hate the dependence of that drug the most of all of them. It

destroys your bones, skin and everything else it seems like, but it does

save your life from time to time.

Like you I have colon problems as well and a lot of arthritis problems cause

colon problems too. I just had a colonoscopy to remove a large polyp and

the scope from my stomach shows I have 2 ulcers. My gastro doctor isn’t

worried at all about my predinsone, but he doesn’t want me on any arthritis

drugs right now. So I’m trying to cope without them, which isn’t easy.

Sometimes inflammation only is helped by anti inflammatories. I also have

Fibromyalgia and a skin condition from the arthritis called erythromelalgia,

which causes my skin to turn red and burn like mad. That bothers me almost

as much as the arthritis pain. So everyone’s degree of pain is different.

It sounds like you have a good rheumatologist though who at least

understands the pain that goes along with PA.

All drug decisions have to be a personal decision. For me it was either

take them, or die. I didn’t feel like I had a choice in the matter, but

maybe you aren’t that bad yet. Talking to a good pain doctor might help you

feel more comfortable taking them and make you realize that just because you

take narcotics you aren’t addicted to them.

I hope this helps some, and if you want more details let me know and I can

write you personally. Take care and I hope your pain lets up soon.

Fran in Florida