Re: Answer to Sheila

June 23, 2006

Sheila,

I understand drug reactions, I've had a few! But my Mom is even worse, she

seems to react to everything. Interestingly, Ultram is one to the only drugs

that she can comfortably take. Different for everyone!

My Nurse Practicioner and I had a conversation one day, because I had been

complaining of the terrible pain in my feet for quite some time. She said that

they were doing experiments with anti-seizure drugs (in very small doses) to

treat nerve pain. The reasoning is that anti-seizure drugs calm the nervous

system, so it helps with nerve pain as well. Well, I agreed to try Tegretol in

small doses, instead of more pain pills. I think she was just as curious as

anything else. Well, it worked like a charm! And because it is in such small

doses, it tends to be tolerated better with fewer side effects. We are talking

only 1/2 to 1/4 usual dosage. I know nothing works for everyone, but it is an

idea.....especially if you have drug tolerance problems.

I know it can be very discouraging at times. I have had fibro. for about 9

years myself. Keep at it girl! When you find the right drugs, your quality of

life goes up so much. I also understand about developing drug tolerances.

Everyone has to switch every once in a while when that happens. I think that is

pretty normal. Anyway, good luck!

Kellie

If logic tells us that life is a meaningless accident, don't give up on life,

give up on logic. If logic tells you that in the long run nothing you do makes

a difference, then don't live in the long run. Life is a series of moments--to

live each one is to succeed.

Re: Welcome to Fibromyalgia_Support_Group

Thank you so much for getting back to me. My name is Sheila and I have been

suffering from fibro for about 10yrs now. I have been on different

medications over the years and I haven't really found the right one. right

now I am on neuronton 6mgs. 4 times a day and I have been having side

effects from it. I have put a call into my doctor twice so far today. He

gave me his cell phone # cause I could never reach him while he was in the

office. I have yet to hear back from him. I have been in so much pain that I

don't know what to do or where to turn any more. I thought for sure that

this neuronton was going to work because the people that I have talked to

that are on it swear by it so it is sort of like a let down for me. I also

take a pain medicine called talasan. That wears off in 3 hrs. and you aren't

suppose to take more than 4 a day. I had been without talasan for a week and

then when I went to go back on it it made me sick so I took a half a pill

and that seemed to work, but any medicine I am on for a long period of time

I get immune to and it is not effective. I also have vicodine to take, but

that makes me so tired. I have never felt so alone as I do right now. I fell

like my doctor has let me down. I spoke to my pharmacist and she says that

alot of people don't stay on the neuronton long enough to see if it will

work or not because of the side affects. She did tell me of a drug that

begins with an L that she says has the least side affects. I do have

problems sleeping at night and I take a muscle relaxant called zanaflex. Has

any one else experienced any side affects from neuronton? I mostly have alot

of pain in my upper legs which my doctor says comes from my back. I do have

artritus in my lower back. Most of the time when the pain is so bad I have

to stand in the shower with the water so hot that my skin turns bright red

just to ease the pain, but that only seems to work for about a half an hour.

I have alot of pain in my hips and my upper arms. I don't want to live like

this any more because to me this is no quality of life. I have no energy to

do anything and I am very discouraged because nothing I have taken really

works. People keep telling me that I have to find the right combinations of

drugs and then stick with it. I have also tried ultraum, but I am not able

to take that. I would love to hear from others as to what they have found to

work, etc.

Thank you for listening and I am sorry if this is so long.

Sheila

June 24, 2006

Hi Sheila,

I too, have a lot of drug reactions, everything from sleepiness to

severe nausea to a more life-threatening response, can't remember

what that's called but my muscles lock up, esp in my jaw and throat,

and my tongue swells.

The drug your doc (NP?) may be thinking about that starts with

L...Lyrica? It is a cousin to Neurontin, but less side effects, and

less build up of tolerance, so it keeps working without upping the

dose. I've been on it for about 3 months, and it has helped. It made

me sleepy at first, but now I'm fine with it. I also have lidocaine

patches...I put them on my feet before I go to bed and take them off

next morning...makes walking a lot easier. If your skin can tolerate

the adhesive, its a great way to get the pain relief without the

systemic reaction to the drug...like sleepiness or nausea. Hope this

helps,

River Grace

>

> Sheila,

> I understand drug reactions, I've had a few! But my Mom is even

worse, she seems to react to everything. Interestingly, Ultram is

one to the only drugs that she can comfortably take. Different for

everyone!

> My Nurse Practicioner and I had a conversation one day, because I

had been complaining of the terrible pain in my feet for quite some

time. She said that they were doing experiments with anti-seizure

drugs (in very small doses) to treat nerve pain. The reasoning is

that anti-seizure drugs calm the nervous system, so it helps with

nerve pain as well. Well, I agreed to try Tegretol in small doses,

instead of more pain pills. I think she was just as curious as

anything else. Well, it worked like a charm! And because it is in

such small doses, it tends to be tolerated better with fewer side

effects. We are talking only 1/2 to 1/4 usual dosage. I know

nothing works for everyone, but it is an idea.....especially if you

have drug tolerance problems.

> I know it can be very discouraging at times. I have had fibro.

for about 9 years myself. Keep at it girl! When you find the right

drugs, your quality of life goes up so much. I also understand

about developing drug tolerances. Everyone has to switch every once

in a while when that happens. I think that is pretty normal.

Anyway, good luck!

> Kellie

>

> If logic tells us that life is a meaningless accident, don't give

up on life, give up on logic. If logic tells you that in the long

run nothing you do makes a difference, then don't live in the long

run. Life is a series of moments--to live each one is to succeed.

> Re: Welcome to Fibromyalgia_Support_Group

>

> Thank you so much for getting back to me. My name is Sheila and

I have been

> suffering from fibro for about 10yrs now. I have been on

different

> medications over the years and I haven't really found the right

one. right

> now I am on neuronton 6mgs. 4 times a day and I have been having

side

> effects from it. I have put a call into my doctor twice so far

today. He

> gave me his cell phone # cause I could never reach him while he

was in the

> office. I have yet to hear back from him. I have been in so much

pain that I

> don't know what to do or where to turn any more. I thought for

sure that

> this neuronton was going to work because the people that I have

talked to

> that are on it swear by it so it is sort of like a let down for

me. I also

> take a pain medicine called talasan. That wears off in 3 hrs.

and you aren't

> suppose to take more than 4 a day. I had been without talasan

for a week and

> then when I went to go back on it it made me sick so I took a

half a pill

> and that seemed to work, but any medicine I am on for a long

period of time

> I get immune to and it is not effective. I also have vicodine to

take, but

> that makes me so tired. I have never felt so alone as I do right

now. I fell

> like my doctor has let me down. I spoke to my pharmacist and she

says that

> alot of people don't stay on the neuronton long enough to see if

it will

> work or not because of the side affects. She did tell me of a

drug that

> begins with an L that she says has the least side affects. I do

have

> problems sleeping at night and I take a muscle relaxant called

zanaflex. Has

> any one else experienced any side affects from neuronton? I

mostly have alot

> of pain in my upper legs which my doctor says comes from my

back. I do have

> artritus in my lower back. Most of the time when the pain is so

bad I have

> to stand in the shower with the water so hot that my skin turns

bright red

> just to ease the pain, but that only seems to work for about a

half an hour.

> I have alot of pain in my hips and my upper arms. I don't want

to live like

> this any more because to me this is no quality of life. I have

no energy to

> do anything and I am very discouraged because nothing I have

taken really

> works. People keep telling me that I have to find the right

combinations of

> drugs and then stick with it. I have also tried ultraum, but I

am not able

> to take that. I would love to hear from others as to what they

have found to

> work, etc.

> Thank you for listening and I am sorry if this is so long.

>

> Sheila

>

June 24, 2006

Thank you River Grace for getting back to me. Yes, Lyracia is t he other drug

that my pharmacist has told me about that does have the least amount of side

affects. As of this morning I still have not heard back from my arthritus

doctor. I am really disappointed in him. I called him twice yesterday and left

him a message. this was the first time I had ever done that and he can't even

call me back. I am seriously thinking on changing and going to some one else. I

really like this guy alot because he has a great personality and will give you

just about anything you ask him for. He to has fibro. I think I missed caculated

as to how long I have had fibro, I think it has been about 6 yrs, not 10 that I

had previously thought. I can assure you that this is no quality of life. I was

even thinking of taking the vicodine this weekend and just sleep my days away

because I am not worth any thing than that meaning I can barely get any thing

done or accomplished. I didn't sleep woth a darn last night and I even took a

sleeping pill after laying there for 2 hrs. I might have slept for 45 mins if

that and the rest of the time I lay they crying. When I had called my doctor's

office to see if I could possibly go in and see the other doctor that was in the

secreatary took my information down and spoke to the doctor who had said that I

needed to be on the neurton for at least a month before it would begin to work,

side affects and all, but I have cut back my dosage quit a bit and I am going to

get off of it as quick as I can. I have a hard time in moving around. I am

suppose to start a new job the 2nd week of July, but I doubt that that is going

to happen. I can't imagine my life without pain. My family doctor has agreed to

see me on Monday and I can probably get him to prescribe the other medication

for me, but I know this is not his expertise, but I have been going to him alot

longer than the arthritus doctor and he has been a life saver to me. I am just

feeling very discouraged right now. I have many animals that are very dependant

on me and I can't even do right by them. I used to enjoy them so much, but now

it is such an effort just to feed them. I don't enjoy living this way. Every day

is the same as last some days there might be more pain. Thank you for listening

to me.

June 24, 2006

Hi , Thank you for writing back to me. I was on Ultram as well, but I

wasn't able to take that either and I was only taking it before bedtime and then

I had been taking a half of a pill and still wasn't able to tolerate it. The

pharmacist told me that I seem to have a low tolerance to drugs. I don't want to

spend the rest of my life as a couch potato. To me that is not quality of life.

I am only 54 yrs. old, but I fell like I am in the 90's. I used to think that

they lied about my age on my birth certificate because I have always felt alot

older than what I actually am. This arthritus doctor that I have been going to,

he is my third doctor. My first one that diagnoised me put me on an

antidepressant effexor which was the root of all evil for me. Then the second

doctor had terrible bed side manners. He didn't treat his woman patients very

well and I have heard some people that had gone to him complain about it so then

I found this doctor whom I really love, but now I have doubts about him because

when I really needed him yesterday he wasn't even there. He had given me his

cell phone # the week before when I was to see him because every time I called

the office he never was returning my calls, but I guess that doesn't even

matter. He is the nicest person. he never rushes you out and he talks about

every thing any anything. He is very socialble. I have been going to him about 2

yrs. now or alittle longer, but I am about ready to give him up as well. I don't

like dealing with his employee's who work in the office, but any how there is

another lady I know that she takes neuroton and ultram during the course of the

day and she swears by them. My daughter who is 34 just started taking neuronton

and she is only on 1200 mlgms. and she says she feels great. She has no more

pain and she says she has so much more energy and then I look at myself and

wonder what the heck is wrong with me that I can't feel half that good. I fell

like my life is such a waste. Every thing that I once enjoyed before doesn't

mean anything to me any more.

om: Kellie Ross

Date: Fri Jun 23 21:42:35 CDT 2006

To: Fibromyalgia_Support_Group

Subject: Re: Answer to Sheila