Re: Pain meds

[Guest guest]

Myrtle,

Past discussions concluded that tylenol was OK at the recommended

doseage on the bottle. Pre tx alternatives include ibuprofen (Advil),

which isn't metabolized by the liver. Post tx my center said to use

only tylenol, because immunosuppresant drugs tend to damage the

kidneys and since tylemol is metabolized by the liver that takes

stress off the kidneys.

Tim R

> Would like to know what over-the-counter medication is okay to use

> for arthritis pain- most like tylenol say do not use if you have a

> liver disease.

> -Myrtle in MB, Canada, uc/1997, psc/2001

[Guest guest]

It took me about two years to get to the place I would

take the pain meds before the pain got real bad. And I

didn’t take them knowing really the pain was going to

get worse in place of going away.

[Guest guest]

I ended up getting a referral from a friend of mine. She is on one of the

migraine lists and she is the one that recommended the PCP I have now that does

give me pain meds, then after the doc found out I

had cancer they up it. Now I only take them when I really really need them.

Normally it ends up to be like once a day before bed cause I live with pain all

day, unless it is something I can't handle.

I wish there was a way to help you in the quest to find a decent pain

doctor.

ps. i can't take NSAIDS and aspirin, my asthma kicks in. If i ever get allergic

to the narcotics, I don't know what they will do with

me.

What state are you in, just curious?

> I went to a rheumatologist, and even to a pain specialist, nobody would give

me anything for pain!!! I have never been addicted to anything other an cigs my

entire life, I don't even drink!! I have even thought of going to Mexico, but we

all know their meds are mostly fakes.

[Guest guest]

I think we all agree on that one.

>Karla wrote:

> I don't " want " to take pills, I hate them, but I don't want to be in pain

either.

[Guest guest]

> What i need to know is I am on oxyicotin 40 mg 3x day and norco 10

> mg /325 4 x day max. baclafen 2 x day and zanafex at night up to 12

> mgs a night. also other meds foe mental issues! I do take sleep meds

> that don't work.

>

Heidi,

I too go to a pain management doctor, but you need to tell him what

you are on is not working out for you. I told my dr. I'm was afraid of

getting into the powerful pain drugs so he knew I was not a seeker.

You have to build a trust with him some how. As far as your daily pain

he must know about it, this way he sees that the meds at not doing

their job, by your pain levels.Don't let him cut you off when u

talk.Make sure you tell him where all your pain is and how often it

stays with you.Make sure you take your meds too. If he does not change

or tweek your medication then it is time for a new doc. I hope this

helped. Good luck

Toni

[Guest guest]

Karla wrote:

>

> Yet I know people who can get handfuls of pain meds from their drs

> and those people ARE addicted, my mom being one of them. It makes me

> SOOOO angry. I am very very tired of this. People in chronic pain

> especially that have proof of where the pain is coming from, should

> not be denied pain meds!!! Maybe when I hit 60 they will hand them out

> like candy, grrrr.

>

> I don't " want " tot take pills, I hate them, but I don't want to be

> in pain either.

>

Karla,

The first thing I would do if I were you was to start keeping a pain

diary. This can be found by typing in google, pain diary, or pain

journal. Then start documenting all activities you can no longer

complete because of the pain and how it interrupts your daily life.

Ask that they place this in you medical files for documentation and

keep a copy for yourself for later.

This way they have documentation of your pain status, the progression

of pain with the medication(Complications of Lithium and

Motrin).

Hopefully, the doctor and staff will review your notes and send notes.

Hope that helps. bennie

[Guest guest]

--- " Karla " wrote:

>

> I haven't heard of most of the pain meds you all are talking about

like zanaflex.

That's because Zanaflex is NOT a pain medication! It is a muscle

relaxant. It only peripherally helps pain when the source of the

pain is a muscle spasm that the drug can then relax. That's not the

case for most folks with chronic pain. Muscle spasms are temporary -

chronic pain is caused by more permanent damage.

That said, it is very true that often folks with chronic pain have

bad muscle spasms as a result of the real damage causing the pain -

for example, I have spinal nerve damage that causes excruciating

cramps and spasms in my legs and feet. Others have muscle pain on

top of their chronic pain because they unconsciously tighten up the

muscles trying to " guard " against pain coming from a herniated disk,

for example. Fibromyalgia is a particular kind of pain coming from

the muscles, and therefore those muscles might be helped with a

relaxant. These are just a few examples.

Therefore, muscle relaxants sometimes are used in combination with

other pain therapies, but they are NOT being used to change pain

perceptions of either acute or chronic pain like an opiate pain

medication. They are simply being used to treat the source of a

particular cause of pain - muscle spasms. If you don't have muscle

spasms, you don't need a muscle relaxant.

Cheryl in AZ

Moderator

[Guest guest]

--- " Karla " wrote:

>

>> I went to a rheumatologist, and even to a pain specialist, nobody

would give me anything for pain!!!

Karla -

Keep looking for a doctor who will treat you appropriately. It took

me almost three years to find one. I can't even tell you how many

doctor's appointments I went through. But there are doctors out

there who are able and willing to prescribe opiate therapy for

chronic pain. Most primary care doctors and surgeons are NOT set up

to handle the federal documentation necessary to prescribe opiates

long-term.

You just have to keep looking - and I would recommend looking again

at other pain management doctors. Like any specialty, there are good

ones and bad ones out there, so you have to interview several to find

the right one. But there are good ones out there, and if you keep

looking you should be able to find who is willing to stick with you

through the long haul and give you relief.

Hang in there.

Cheryl in AZ

Moderator

[Guest guest]

Hi I'm Jack from Mass.

I just wanted to ask the group if anyone is having the same problem i am. I

recently had a lamectomy and as expected it didn't take, so on with the pain

man. doc. etc etc.

Anyway I'm having such spasms on either side of my spine i cant function, well

I have to but. I'm on muscle

relaxes but if i go over board on them i get nasty. Any help from the group will

be appreciated.

Thanks

Jack from Mass.

[Guest guest]

I have gone through 6 years of this stuff with the

pain doctors. The truth is most doctors don’t

remember you from one visit to the other. And then

only because they read your chart before they open the

door.

I use my primary GP (familiy) doctor for all

most all perscriptions .I’ve even got my pain

management doctor faxing him what ever he wants me

on. Its a whole lot eaiser to get my GP to help me

with pain than the doctor thats supposed be doing it.

My advice to any one that doesnt have a familiy type

doctor is to get one, and keep him clued in on every

thing thats going on. He can open doors and take care

of things a whole lot better than you can on your own.

And I have found out that most doctors employees will

pay a whole lot more attention to fax from you than a

phone call, I don’t know why but they will. And I’m

still waiting on my Nerve stimulation device implant

that was suppose to happen last month. on my soap box

again

Ron <ronpat0471@....>

[Guest guest]

Not sure if this helps, but here's my timeline of doctors and how they treated

me (medicine-wise):

I have Lupus, which is the underlying cause of my chronic pain. After my

unhelpful GP didn't take my complaints seriously for about 2 years she finally

did give me a referral to a neurologist. So I saw the neuro for a year. She had

me taking darvocet and advil. The pain wasn't as bad as it is now, and that

worked ok for the time being. Luckily the neurologist realized through ongoing

lab work and monitoring over that time that my problems may be out of her

specialty's scope. From my experience and so many others that I read about, it's

sadly not always or even often the case that one specialist will realize that

they may not be the best specialist for your case. So I was very lucky there and

I still see her.

So she sent me to a rheumatologist for further evaluation. So I went to the

rheumatologist, did tons of tests over the next few months and came to the

autoimmune/Lupus diagnosis. My chronic pain is more in the muscles and now

starting to affect my joints as well. Many people on here have spinal problems,

so that would be a whole different

approach and set of doctors. I just wanted to get across the point that the

correct field of expertise is essential when dealing with a lifelong pain issue.

Ok so back on topic and long story kind of short: From the beginning, my

rheumatologist is just the type of doctor that I'm pretty sure will NEVER

directly prescribe opiate painkillers. I don't know if it is just the extra

administrative headache, the potential for legal problems with the DEA and

growing media attention, or what. But I am almost positive that she just won't

do it. And the rheumatology field

has many, many horribly painful disorders that has many conditions that would

require lifelong treatment with painkillers.

The thing is, I don't think she is 'morally' opposed to them like some doctors

are; here is why: Over the couple few years I've been seeing her, she never

debates that I need the pain medicines. In the beginning I was taking the

darvocet and literally handfuls of Motrin throughout every day. She said this

was fine.

Personal note: thanks to the knowledgeable members HERE on this list, I posted a

message about this. you guys told me how bad all of that Motrin/ibuprofen was to

take at those doses over long periods. From those tips, I brought the issue up

with my neurologist and she agreed and had me take vicodin. so thank you

everyone on here again, you most likely probably really did save my life.

OK, sorry for being so darned scatterbrained! this probably isn't even making

sense anymore. but I will try: My point is after the neurologist changed to a

stronger painkiller, the rheumatologist was fine with it. So I specifically

asked her, the rheumy, what the best route painkiller-wise would be. she just

said that was strong and fine and changed the subject very fast. like too fast,

I could definitely tell that she thought I would 'bug' her for something

stronger or whatever.

Over time I tried oxycontin and fentanyl and asked the rheumy about her

thoughts. Again she said yes, that is fine, keep taking what you're taking. My

distracted point of all this is that she obviously doesn't object to these

medicines, but she does NOT want to be the

one prescribing them for whatever reason.

The other thing I wanted to say was my Pain management doctor experience: I am

better with my current meds but still hurt. So about a year ago I self referred

myself to a pain management specialist. Without blabbing on this time, he was

only willing to prescribe a pain medication if I agreed to have 'trigger point

injections'. I am in pain, and will try anything reasonable that might help. So

I made an appointment. But before going, since I knew nothing about what this

was, I asked both my neurologist and rheumatologist if this would help. They

both said a very firm NO. They both said that those would not help at all for my

condition.

Confused, I did research online and found so many similar stories and it's been

discussed here also. Those trigger point injections and other things like

epidurals are the main source of revenue for pain specialists. Just for my 1

round of injections he was going to bill somewhere around $1,000 or more to my

insurance.

So I cancelled the appointment and that was that.

I then told my neurologist about this and she actually got pretty mad. I could

see the frustration in her eyes. she then flat out said that this is by far not

the first time this has happened with her patients and that she is getting more

and more appalled at this practice and said basically that in her experience

pain management specialists are almost useless and that my experience is

typical. She explained it as, " why would they bother to mess with the paperwork

and time with normal appointments and medication when they can make 50 times

more money with one injection "

Needless to say, my neurologist handles all of my pain meds and has never had a

problem with me and at least seems to trust me when I say it hurts and is

willing to prescribe stronger meds when needed. I am the one who has turned them

down.

But I don't mean to say that for many, the pain specialists don't offer valuable

services. lots of people here get lots of relief from their medications and

injections and other things they do. which is how it should be. I just wanted to

say my experiences so far, and to make the point that a pain specialist is not

always the one and only source of stronger long term opiates. I love my neuro

and am thankful to have found such a caring and honest woman.

So if anyone reads this far and is having trouble finding a doctor that they

trust and one that is not afraid to USE their skills and ability to provide

useful medications when they are needed, don't loose hope. Keep trying and you

will find one sooner or later.

Sorry for this being so long. and like I said before, it might not even be

readable, it is so scattered. But hopefully it helps

someone somewhere like you all have helped me so much.

K

[Guest guest]

ron Pat wrote:

>

> And I have found out that most doctors employees will

> pay a whole lot more attention to fax from you than a

> phone call, I don’t know why but they will. And I’m

> still waiting on my Nerve stimulation device implant

> that was suppose to happen last month. on my soap box

> again

>

> Ron,

Write a note in note in big letters with a smile and fax it to

them : ) Bennie

[Guest guest]

It doesn't help that I am with an HMO. But they DO prescribe narcotics, I know

several people on them there. This is an issue I have dealt with

forever and even when I had different insurance. And what gets me is they know I

don't abuse meds, I have been on Klonopin for years for anxiety and sleep and I

always have pills left over each month.

I live in was state.

Thanks, Karla

-------Original Message-------

I wish there was a way to help you in the quest to find a decent pain

doctor.

[Guest guest]

--- " S " wrote:

>> Personal note: thanks to the knowledgeable members HERE on this

list, I posted a message about this. you guys told me how bad all of

that Motrin/ibuprofen was to take at those doses over long periods.

From those tips, I brought the issue up with my neurologist and she

agreed and had me take vicodin. so thank you everyone on here again,

you most likely probably really did save my life.

Hi K -

I'm so glad you were able to make that change! I remember your

questions on it when you were going through that, and we were worried

about you.

But just remember, Vicodin has very high levels of Tylenol, and that

can be just as dangerous - particularly to your liver functions.

Tylenol liver poisoning is the single most frequent cause of death

from over-the-counter drugs. You can overdose on Tylenol very

quickly, and an overdose is often fatal. So be very aware of just

how much you're taking every day, don't take any additional Tylenol,

and be aware of hidden Tylenol in other medications (like over the

counter cold/allergy meds).

And if you plan to take the Vicodin every day even at a " safe " dose,

I'd still recommend getting your liver function checked (just a blood

test) every six months to a year. I personally wouldn't want to be on

Tylenol every day long-term, even at a " safe " dose.

If you're concerned about this, you could discuss with your doctor an

alternative to Vicodin, that is Norco - it is the same opiate as

Vicodin (hydrocodone) but with half the amount of Tylenol per dose.

Norco is just a brand name, like Vicodin is - there are generics of

it available so it shouldn't cost any more.

Ideally, if someone is going to be on daily opiate therapy long-term,

we should take only the " pure " opiate formulations, and preferably

long-acting versions; not these short-acting ones designed for

treatment of acute pain that are laced with Tylenol or NSAIDs. The

tylenol and NSAIDs are the toxic part of these formulations. The

opiate itself is very safe relatively - no longterm organ damage at

all!

You probably already know this, but I just wanted to share this

information just in case.

Cheryl in AZ

Moderator

[Guest guest]

Cheryl in Az wrote:

> If you're concerned about this, you could discuss with your doctor an

> alternative to Vicodin, that is Norco - it is the same opiate as

> Vicodin (hydrocodone) but with half the amount of Tylenol per dose.

> Norco is just a brand name, like Vicodin is - there are generics of

> it available so it shouldn't cost any more.

Hi Cheryl:

Actually you got it right, I am now taking Norco 10/325. For about 8

months or so now, which again was as a direct result of me asking the

" right " questions that were brought up on here. I still have a habit of

just calling it Vicodin because 'everyone' in the world seems to know

what that is. Nobody I know knows what Norco is, so I just always refer

to it as Vicodin and it saves me from explaining it to my friend or

whomever

At the time I was taking Vicodin ES, the really high tylenol one. Many

times a day. but thanks to you guys, I asked specifically about this and

was changed to the Norco. So thank you again for that help as well and I

would VERY MUCH recommend to others that might be reading this that take

Vicodin -- especially those extra high Tylenol ones -- ask your doctor

very directly about the long term concerns. I also took Darvocet a long

while back, which I remember was also very high in Tylenol per pill.

Thinking back, why did my doctors, and any doctors for that matter ever

decide to keep me on higher Tylenol meds rather than something like

Norco; without me having to be the one to ask?? It sure seems like a

trend on this list and there are so many others that have had the exact

same regime prescribed for conditions that are in no realistic terms,

going to disappear. For temporary pain or if you are just starting to go

through some process of testing and getting diagnosed, I can understand

them using Vicodin or whatever.

But when someone gets a firm diagnosis of some condition that is going

to be chronic and is painful, WHY do the majority of doctors seem to

just stay with those meds that cause so many other predictable and

possibly deadly side effects? I am 99% sure that if I wouldn't have done

my own research, including so many helpful hints on here, that I would

still be taking 4, 5 or 6 or more Vicodin ES per day.

I don't understand why this seems to happen so much, this list is full

of similar posts. So once again I want to say thank you for helping me.

I only hope that others will get this help too.

K

[Guest guest]

> " S " wrote:

>

> I don't understand why this seems to happen so much, this list is

full of similar posts. So once again I want to say thank you for helping me. I

only hope that others will get this help too.

Only one answer: Pain medication reps in the field. Money. Money.

and more Money.

Calle//Carin in AZ

[Guest guest]

Hi Jack,

I have had 3 lamectomies and have been left with a lot of pain and nerve damage.

I have a lot of spasms as a result of the surg. I use my meds but they don't

always work that great. I think I have tried everything to help with the pain.

Including your meds you may try hot or and cold packs, a hot tub if you have

one works great or Lidoderm patches sometimes will help.

Hope some of these may help. Have a wonderful day.

Marsha (TN)

-------------- Original message --------------

From: jadonah5@...

Hi I'm Jack from Mass.

I just wanted to ask the group if anyone is having the same problem i am. I

recently had a lamectomy and as expected it didn't take, so on with the pain

man. doc. etc etc.

Anyway I'm having such spasms on either side of my spine i cant function, well I

have to but. I'm on muscle

relaxes but if i go over board on them i get nasty. Any help from the group will

be appreciated.

Thanks

Jack from Mass.