narcotics

[Guest guest]

Narcotics have helped me wonderfully, I wouldn't have a life without them.

However, my Doctor also insists that I see a psychologist because of the

potential side effects. It is defenitely true that opoids have adverse

psychological side-effects on some people. It is good be monitored continually

if you are

going to take them. There is no easy answer when the pain gets bad. It is

just hard and you have a choice among several possibilities and none of them

are pleasant.

[Guest guest]

I take a few perscriptions a day ,12 , Plus a 2hr+ Remicade infusion every

7-8 weeks and if it wasn't for my 5mg.Oxicoden every 8 hours ,Not Oxycotin , it

makes the differerance between living life and L i v i n g L i f e...

I am on full disability but still can get around O-K... Thank God every day

....

Walter@... essexhaus@...

[Guest guest]

People face a lot of pressure to engage in activities, (work, household chores,

childcare, etc.) in spite of pain. I know that I have more difficulty getting

through my day without the low dose of methadone that I take. I do think that

the pressure to keep up with a demanding life can lead to excessive dependence

of narcotics. There is not a lot of tolerance for failure to keep up with

life's demands. If we were living in a less fast paced society where we could

take time off if needed or just slow down, perhaps there would be less of a need

for pain relief. I also know that others, like myself, want to participate in

family activities. Its not just the need to keep up, it is also the desire to

keep up. I guess what I'm saying is that at times it might be better to slow

down and accept limitations rather than becoming increasingly dependent on

narcotics. It is all a matter of balance, I suppose. I know that lowering

expectations of ourselves is not easy and sometimes not even practical. Please

keep in mind I'm speaking from the perspective of a user of narcotics and

someone that has experienced chronic pain.

Kay Braddock

Speedway German Wirehaired Pointers

Paint Horses

[Guest guest]

Dear Kay,

I NEVER use narcotics because I do not want to develop dependence. I think

your pain gets worse after using them for more than a few days and then trying

to go off. They gave me Ultracet recently, which I understand is heavy tylenol,

and I haven't used it even once, even when I got bad pain a few days ago. It

has subsided significantly with regular tylenol and iron supplements for my

anemia. I do take tylenol though, 2 tabs twice a day if the pain is excessive.

I imagine that someday I may have to take narcotics, but I'm hoping to delay

that as long as possible, as I could live another 40 years!!! who knows?? Maybe

they'll have a cure soon,that's my biggest hope.

Debra!

[Guest guest]

Kay , You couldn't of said it better about the use of Pain meds...Life just

woudln't be the same without them... R.S.27years...

Walter@... essexhaus@...

[Guest guest]

In a message dated 12/12/03 8:22:24 PM, Emerica130@... writes:

<< I NEVER use narcotics because I do not want to develop dependence. >>

Debra,

Most of us who suffer from chronic pain take narcotics, because it makes

for a better quality of life! But if you've decided not to take them because

of a possibility, then your living scared and will not improve much without

taking some chances. Unless you have an addictive personality most people

have no problems stopping and starting with narcotics. It comes down too you,

do you want to feel better and will your doctor prescribe them to you. ,

ReA, Fibro /I'm taking methadone now and have taken a slew of others with

never a problem in 8yrs.

[Guest guest]

I have taken narcotics (off and on) for the last 10+ years, as my AS,

increasingly, became pretty unbearable and I was unable to do simple things,

like

shopping, normal household chores, or to be able to stand in one place for even

a few minutes. Even sitting for any length of time was painful. In the

beginning of my disease, after the initial 4 years of SI fusing...flares became

sporadic and not a daily occurrence. In the early years of our disease, most of

us

learn to cope with our limitations and pain in different ways....heat or cold

packs, heating pads, Tens units, NSAID, massages, DMARD, antidepressants,

various alternative methods, spas or whirlpool baths, mind control and positive

thinking, etc., but at some point....in the progression of our disease,

especially when there is severe damage and fusion to many joints, you and your

doctor

may talk over the addition of narcotic use. Over the last ten years, pain

became my constant companion, as it has for many of us " old timers. " Thank

heavens

for pain medicines that enable us a chance to live half (plus or minus)

normal lives. However, I have a healthy respect for their use for our type of

chronic pain. Each of us are unique in our physical and psychological makeup,

and

this, besides our disease condition and severity, should be taken into

consideration by ourselves and our doctors. Educating ourselves to the positive

and

negative aspects about narcotic use, namely:

1.) their ability to make our life worth living

2.) their tolerance problem

3.) their withdrawal problems

4.) and the real possibility of addiction (seeking more of the drug than you

need for relieving pain)

is a necessity that we can't overlook.

Best regards, Connie (Granny) AS since 1972, Complete fusion in SI/some in

L-spine/some in T-spine. C-spine impingement (not flaring at moment :-). Rt hip.

Ribs. IBD. Both knees. Kyphosis/Scoliosis. Uveitis. Glaucoma. (These symptoms

are not really unusual for this many years living with AS.)

[Guest guest]

Hello Everyone,

I have another big reason why I must use painkillers: sleep. Not me, but

rather my spouse. I was in such awful pain that I would howl all night. I went

a whole weekend with no sleep, from the pain in my feet, before I finally

told my wife to take me to the ER. Would you believe I was dressed and ready to

go to work that morning? That's how stubborn I am. The ER doctor gave me an

injection of Morphine, and I slept the whole day in an observation room. I was

introduced to a Rheumatologist who put me on Oxycontin, and that made my life

liveable. I am taking Methadone now, only because I lost my Rx insurance and I

can't afford Oxycontin. I would be a total basket case without the Methadone.

Aaaaaaaaaaah, Harv 48/ ReA 24 years, also permanently broken feet

[Guest guest]

What I was trying to say is that I am attempting to delay the use of

narcotics as long as possible. I hate dependency on meds, and once you start

narcotics, you need them to a degree for the rest of your life...especially when

you've

got advanced ReA or AS, etc. When you go off narcotics, you get rebound pain

and that can be difficult to deal with when you've got a full-time job and a

family to take care of. I know people who have had these problems with

narcotics usage, and some became dependent and couldn't function at all without

their

dose. Soon enough, they needed larger doses to relieve the same pain. That

scares me! I've seen both the good and the bad, firsthand, with relatives that

were very close to me, regarding narcotics usage.

If I can get away with using tylenol to relieve my pain, and keep that pain

at a reasonable level, I see no need to go on narcotics at this point, even

though, yes, it would make for a better quality of life. That would mean though,

that I may have to be on them for another 40 years! I truly do not like that

thought! It can also be trouble if you have a car accident and go to the

hospital and it gets reported to the DMV, as this happend to someone I know and

their license was revoked indefinitely! Not good, and this was just done simply

from " discovery " of usage, no evidence of overusage. I don't think that's fair

but it happens. The other driver, upon filing a lawsuit, actually sent the med

records to the DMV and wouldn't let up until they revoked the persons license.

I'd be pretty MAD to say the least, if someone did that to me. However, I

hear it happens often.

There are also detrimental effects as well (physical effects) from being on

long-term narcotics, as of course, there are from being on any meds. I see

nothing wrong with " controlled " narcotics usage, and I agree that it indeed

makes

the difference for many people.

Debra!

[Guest guest]

Harv wrote:

" I have another big reason why I must use painkillers: sleep. "

Well my problem is that when I take codeine it keeps me awake. Does this

happen to anyone else?

~~~Faye~~~

AS and fusing

[Guest guest]

Debra,

I understand your reluctance to going on narcotic pain treatment. I have

a similar situation regarding using a wheelchair. When I finally retired

from my job, I also retired from socializing, because I was in too much pain to

have fun. Now that I have the pain under control I avoid going places because

I can't walk, even though I was given a shiny, almost new wheelchair. It's

mostly due to vanity; I feel ridiculous in the thing. And also, like your

concern, that I feel like I am completely " giving in " to my disease. Why do we

have

to make such important decisions? Things are tough enough already. I guess

that's why I'm not the CEO of Ajax Global Corp. Inc. Yours, Harv 24 years of

*****!

[Guest guest]

Debra!,

I totally agree with you.

Again I use my friend, Les, as an example. Narcotics have been a godsend

for him in some ways but also put him into hell. This last bout with

morphine addiction and withdrawal almost killed him. He is now at a

maintenance doseage for morphine (this is for cluster headaches with which

he has battled since age 10) and feeling much better.

My dr. (rheumy) as I mentioned woun't even work me me on pain meds at all.

He feels I have the type of personality where I could have problems with

addiction... and I do too. If the pain gets really really bad he may give

me injection in my sacro joint and send me to a pain dr but feel I need to

be very closely watched and monitored.

Liz

~~~~~~

" Happiness comes of the capacity to feel deeply, to enjoy simply, to think

freely, to risk life, and to be needed. " **Storm on**

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

EMAIL: juliette@... **ICQ 49746198** MSN-LizKP1952@...

PERSONAL HOMEPAGE PAGE http://members.tripod.com/~LizK

ADDult ADD GROUP PAGE: http://members.tripod.com/~LizK/addult.htm

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

[Guest guest]

Harv, I know just how you feel about the wheelchair thing. I don't have my

personal scooter yet, but many times I longingly look at the babies in strollers

as they pass by me in the mall. I feel like grabbing one of those stroller

rentals...and use it to lean on. My daughter laughs at me when I feel up to

shopping together. She hands over the baby stroller for me to push. I've told

her

I don't want to get a personal walker, but I have thought about getting a baby

stroller and filling it with sand and a cute baby doll...just so I won't have

the stigma of using a walker. I use a cane lately, but it is tiring. Takes a

lot of added effort and energy especially with a bad knee (walking stiff

legged, not to mention the back pain. I've thoroughly enjoyed visits to theme

parks

using their scooters. I just wouldn't have gone if they didn't have them to

rent out and then I would have missed out on all that fun. I've looked at some

of the ads for scooters...like the one Kay was looking at...and they are

getting more tempting looking everyday. My doctor gave me a handicap parking

prescription....but I never bothered to get a permit. Maybe the stubborn streak

in

us is good in some aspects....keeps us going and going...like the energizer

bunny. Then again, we can't just give up and stay home either. Just have to make

that decision to learn how to do these new things....so it becomes second

nature to us. I'm preaching to me....as much as to anyone else on the list. :-)

Is

your wheelchair motorized? Tell us a little about it...and how you went about

getting it? How much they cost?

I had a scare last night. A big black blob popped up in another area of my

peripheral vision and continuous flashes of lightning streaks, bright white in

color....almost like a fireworks show. I've had vitreous tears before so I'm

familiar with flashes and from my uveitis flares...have had sparkles and black

dots/threads,etc. This was completely different and more dramatic. I called the

doctor and he is going to see me in the morning. The pain has subsided to

where it just hurts when I move my eyes. I'm up and about and able to move my

head without pain...thank goodness. I've done some searching on the web...and

sometimes when there is trauma from surgery and the inflammation is great...you

can have the vitreous pull on the retina and cause a tear and that can cause a

more serious condition, retina tear and detachment. I feel like I just want to

sit and do nothing....until I find out what is going on. That's why I'm

sitting here posting...and not doing so many things that need to be done during

this time of year. Has anyone had a retina tear...what were your symptoms, etc.?

What did they do for you? I can't help thinking about our Dr. Lages who had

glaucoma. He stopped posting and I've always wondered whether he lost his vision

and wasn't able to post anymore. Does anyone know what happened to him? He

was such a help to us in the beginning of our group.

Reminder to everyone in the group....try not to over-do this season. Is that

a " are you kidding " comment! Easier said than done. :-) Dec. has always been

one of my worst months for pain. Shopping, cooking, decorating, parties, etc.

I've been using the internet for a lot of my shopping lately. I've found that

some places ship quite cheaply...better deals than I can get. I got a 25#

Foreman's patio grill at Walmart online....and the shipping was only $4

plus

bucks! That got me started....and I found that there are online stores for

almost all the chain stores. Maybe I've been in the dark ages...but it sure has

made shopping for me much easier this year. They also give gift certificates.

Best regards, Connie (Granny)

[Guest guest]

Faye, I have weird reactions to codeine. Generally speaking (although it

depends on the individual), it doesn't work as well in women. There is a

class of narcotics called kappa opoids such as talwyn, that they have found

work much better in women and not well in men. That is why usually codeine

and similar narcotics are prescribed, because they work better in men, and

they used to only do the studies on men.

Sometimes, heavily sedating drugs can make me extremely talkative, kind of a

parodoxical reaction. Also, codeine gives me migraines. I thought it must

be my imagination, then I read that codeine is a migraine trigger for some

people. Plus, I get terrible nightmares from codeine, which my mother did

too.

Janet in SF

[Guest guest]

Back in 1996, when I was having severe pain due to inflammation of the joint

capsules at the base of my toes, I took Vicodin. I would have pain spasms

where I would be knocked off my feet, and would knock over displays in

stores, and grab onto complete strangers to keep from falling down. I kept

having to go back to the doctor to get 10 more Vicodins. It was ridiculous.

The pain was the kind that wakes you out of a sound sleep.

I could not get off the Vicodin, until March 1997 when I went to my current

rheumatologist for the first time. He diagnosed me with reactive arthritis

and started me on sulfasalazine. When the toe pain flared up again in 1999,

he started me on Vioxx which I'm still on.

My experience has been that since I got properly diagnosed and started

receiving the appropriate medications for spondyloarthropathy, I have not

needed narcotics at all. But, I if I do need them in the future, I wouldn't

hesitate to take them. For me, Vicodin (hydrocodone) is much better than

codeine. I am fortunate that I do not have an addictive personality and am

not prone to developing addictions. I thank God for this. I'm also lucky

that Vioxx is an extremely effective painkiller for me and does not affect

the brain.

Janet in SF

ReA since 1973; diagnosed 1997; HLA-B27+

[Guest guest]

Sort of, I get somnalant, where I'm neither awake nor asleep and

never really rest - it certainly prevents deep sleep. I may

get some mild pain relief, but it usually rebounds triple after

I take non-NSAID pain killers.

>Well my problem is that when I take codeine it keeps me awake. Does this

>happen to anyone else?

~~~Faye~~~

--

kjg@...

Canberra, ACT Australia