pain meds

May 19, 2004

dr. vasey said the same thing - 6-18 months - kinda weird... he actually wrote that in a letter he gave me to my primary stating that the implants were indeed the cause of my illnesses...

shari

May 19, 2004

Shari: I'm wondering if the letter from your doctor stating the cause of illness as breast implants isnt hurting your chance of getting the disability. WE all know that that is the real cause, but you have had them removed and the medical community doesnt look at them as the cause of any illness and since they are no longer inside you, you shouldnt be sick...blah, blah, blah... I would base the disability on "other" illnesses like the fibryomalgia and chronic fatigue, depression. Anything else you can think of. Just my opinion.

Vickiehalvey70@... wrote:

dr. vasey said the same thing - 6-18 months - kinda weird... he actually wrote that in a letter he gave me to my primary stating that the implants were indeed the cause of my illnesses...shari

May 20, 2004

Vickie may have a good point there. I have found the most effective

treatment from my dr's is when I have down played or not menitoned

implants period and just talked about my SYMPTOMS, without mentioning

the cause. Since they don't really know what causes any of this

horrible crap what difference does it make now anyhow, other than our

own vindicatin, which while being important, financially it could

hurt you. I say play up the symptoms, pain, depression, fibromyalgia,

etc etc, and don't even talk about implants. WHat I usually did is if

my Dr's asked me why I was in so much pain and what I thought caused

it I would say, " well I had surgery and got implants " then I go on to

say, " shortly after that I became very ill " and then " i feel it was

connected but I don't have any proof, since removal I still have pain

so I do not know anymore " if I said Oh i am better since removal,

they would have stopped giving me meds, so that was how I played it

until I no longer needed the meds. Period.

it is worth a shot at this point I think.

hugs

-C

, Vickie <gracie17db@y...> wrote:

> Shari: I'm wondering if the letter from your doctor stating the

cause of illness as breast implants isnt hurting your chance of

getting the disability. WE all know that that is the real cause, but

you have had them removed and the medical community doesnt look at

them as the cause of any illness and since they are no longer inside

you, you shouldnt be sick...blah, blah, blah... I would base the

disability on " other " illnesses like the fibryomalgia and chronic

fatigue, depression. Anything else you can think of. Just my

opinion.

> Vickie

>

> halvey70@a... wrote:

> dr. vasey said the same thing - 6-18 months - kinda weird... he

actually wrote that in a letter he gave me to my primary stating that

the implants were indeed the cause of my illnesses...

>

> shari

>

October 19, 2004

Alisha,

I have had CMT all my life and so has my daughter. We now found a natural

antioxidant drink that we take faithfully, it is delicious, and my charlie

horses at night seem to be less severe. I use it as my " cocktail " as I am

preparing dinner. Also, the neuropathic burning of the feet is gone. I am in

amazment but thankful that it is helping. Thanks to our herbalist who turned

us

on to this product. It helps with arthritic pain and so much more.

Candy

October 19, 2004

Hi Alisha,

I have some of the severest pain of anyone on this site, it would seem. I

have tried more drugs than you can imagine. Neurontin didn't phase me at

any dosage. Percocet, darvon, vicodin..........you name it................not

a bit of help. The doctor recently put me on OxyContin and, while it helped

tremendously, I was worried about the addictive properties of it and asked

for something else. So he gives me Avinza (a morphine-based pain killer). I

think he missed my point but that is the level of drugs that I am at now. The

Avinza didn't help at all and, if possible, worsened my pain. Finally, after

talking to several doctors and counselors, I am back on the OxyContin. I

do not take it twice a day everyday like it was prescribed. Rather, I take it

when I can't stand the pain and usually only during the daytime. As one doc

put it, " addiction is only a problem when you have to stop taking the drug

and you will be taking it for the rest of your life. " That was a

slap-in-the-face reality call for me, but he was right. I am trying to find

out if

medicinal marijuana is permitted in the state of Indiana. I have used it and

it

helps the pain tremendously as well. Unfortunately, on my pathetically small

SSI check each month, I can rarely afford it.

Good luck!

Bob in Indy

October 19, 2004

Hi Alisha:

You are so right when you say that pain for CMTers is an individual thing.

We are all different, and what works for one person will not help another

person.

Keeping that in mind, I have been taking Neurontin - a.k.a. Gabapentin since

November 2000, and it works for me. I started at 400mg/day and I am

currently at 2100mg/day. Most of the time this works for me....and I may be

in need of a higher dosage as we speak?

There has been a huge volume of posts on the subject of pain. Gretchen keeps

us all informed on most articles related to Neuropathic Pain. I had to set

up a separate folder in Outlook Express just to file these posts.

I hope you get other posts regarding pain, and what other CMTers experience

has been.

Kindest regards,

October 20, 2004

Laurie,

you can email me personally if you like at _sgrkane@..._

(mailto:sgrkane@...) . I will be glad to let you know what I have

experienced.

Candy

October 20, 2004

Hi Candy,

I am very interested in trying that herbal drink that you have been taking.

Nothing seems to touch my pain. I am on Neurotin, Tegretol, Baclofen and at

night I take Elavil and Quinine along with those drugs. During the day I keep

myself busy at work which keeps my mind of the pain. But at night, I find

myself crying myself to sleep, more and more. One thing I have found that does

help relax the nerves in my legs is having a few beers but I heard alcohol can

be toxic to this disease. And I too wonder if they are going to legalize

marijuana for our particular illness.

So if you could let me know where I might find this herb I would appreciate it.

Laurie

October 21, 2004

hi everyone, alisha here,

well thanks for the suggestions, i still don't know what i should do.

October 21, 2004

I needed to finish my thought but my hands got too tired and then I hit the

wrong button and so on. Anyways, since the age of 15, I've been on several

different pain meds. I started off with Elavil and later on Gabapentin because

those were the two drugs that my doc felt that would help. Eventually I ended up

at a pain clinic and that didn't help at all. I had a great doc there and was

grateful for the advice that it gave me.

My pain doc told me that if the basics weren't going to help me then upping the

dose of the med wouldn't help. So for all the meds I was on, it was a lower dose

than what was expected but I suspect also because of my age. Since I've stopped

taking the pain meds, I've been more tired and had more pain but I expected

this.

It's just been really hard on me and my boyfriend. He knows that I have CMT but

he gets just as frustrated when I can't do something with him because of the

pain. I just wish that there was a solution that would work.

Alisha

October 28, 2004

alisha,

Without a script - i don't know. in the bahamas they sell (over the counter) a

pain reliever called ABC. this is a codiene based pain reliever (cheap). guess

you'll have to take a vacation.

dave

October 28, 2004

Can we get more information about this 'cocktail' you mentioned?

October 28, 2004

dave,

A vacation is exactly what I need but I don't have the money for one.

my grandparents are snowbirds and have a place in Texas, they go to

Mexico for meds sometimes when they are there but they are not going

this year because my grandfather needs open heart surgery to correct

some problems.

alisha

May 29, 2006

Which I do appreciate, because since I am a nurse, i see alot of

people get addicted to pain medications.

Have any of you had to switch MD's because of not adequate pain control?

Thanks for your feedback, and hope all is pain or nearly pain free.....

My rh says that only people who don't have " real " pain (meaning those

who use narcotics for " fun " ) have a problem with pain meds. He says if

you have real pain, you don't become habituated, although you may become

dependant.

I would definitely try to switch docs if I wasn't getting pain

management. I know a lot of docs are reluctant to give us pain meds

but I so appreciate my rh because he believes me and is willing

to try to helpn alleviate my suffering...

October 9, 2009

DANA HONEY, GET YOURSELF ANOTHER NEW DOCTOR. PERHAPS YOU COULD PRINT OUT SOME

OF OUR POSTS AND TAKE THEM IN, SO HE WOULD REALIZE YOUR PAIN IS NOT IN YOUR

HEAD. I AM ONE OF THE FEW LUCKY ONES THAT DOES NOT HAVE BONE PAIN, BUT HAVE READ

THE COMPLAINTS OF HUNDREDS OF OTHERS THAT DO, AND YOU NEED A DOCTOR THAT CAN

UNDERSTAND THIS.

DID I MISS WHERE YOU ARE FROM? OR DIDN'T YOU POST IT? THERE HAS TO BE SOMEONE

OUT THERE THAT WILL TREAT YOU WITH THE RESPECT YOU DESERVE, AND BE ABLE TO HELP

YOU. I THINK LOTTIE MENTIONED ACUPUNCTURE? EXCEPT FOR THE FACT THAT IT IS

USUALLY QUITE EXPENSIVE, IT IS CERTAINLY WORTH A TRY AND MAYBE YOU COULD FIND

ONE IN YOUR AREA THAT WOULD GIVE YOU A BREAK. GOOD LUCK TO YOU IN GETTING SOME

RELIEF FROM YOUR PAIN, BLESSINGS, BOBBY

a

(Bobby) Doyle Brecksville, Ohio, USA DX 05/1995

Interferon/9 weeks/hydroxyurea/5 years

02/2000 - Gleevec Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 -

Gleevec/Zarnestra Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10 months

#840 - Zavie's Zero Club 09/2006 - out of CCR 04/29/08 - XL228 trial/U of

Michigan

01/09/ - PCR 5.69

02/13/09 - XL228 trial ended due to side effects

o4/13/09 - Ariad Trial U of Michigan

09/09/09 - PCR 0.017

04/13/09 - Ariad trial at U. of Michigan

09/09/09 - PCR 0.017

04/13/09 - Ariad trial, U. of Michigan

09/08/09 - PCR 0.017

--- On

Fri, 10/9/09, peggybecker@... <peggybecker@...> wrote:

From: peggybecker@... <peggybecker@...>

Subject: Re: [ ] Re: Pain Meds

Date: Friday, October 9, 2009, 8:57 AM

Dana, my name is Peggy! I am so sorry to hear the way the

nurse and doctor treated you. I think sometimes people look @ us and just

assume since we have no visible handicaps that we are fine, but since my

diagnosis of CML 16 months ago I have learned never to judge people! What we go

through is very real, and although I am prescribed perocet for pain(!bone) pain

my Onc is not a very compassionate man. He tries to make me feel like there is

something wrong with me for having so many side effects for the very medicine

that keeps us alive. It's no wonder I take depression medicine. I just try and

count my blessings everyday. Hang in there because there is a lot of support

out there. Best of luck to you. Love. Peggy

Sent via BlackBerry from T-Mobile

[ ] Re: Pain Meds

wow thank you Lottie, My name is Dana I am sorry if i forgot that part. I will

happily try some of the suggestions you offered. I am at a loss at the doctor

situation but i figure if I sit here as long as i can and tolirate as much as i

can without the meds I will get sick enough to go through the R.R.and then maybe

I could get a little help. I saw a new GP a few days ago and I had never been

treated so bad in life! I didnt get through the door five min. and the nurse

came in asked me why i was there, I told her about my disease as much as she

would let me get out i told her all the meds I was coming off of told her I had

been peeing blood for a week and belived my liver to be enlarged and that point

she looked at me in disgust and left the room, my 14 year old daughter looked at

me and asked me why she treated me like that at that point i wasnt asking for

anything but alittle advise as what to do about all the things going on . the

doctor comes in

tells me that she had no idea what i was tring to get away with and that i

didnt belong in her office that i needed to go check myself into a rehab and

went on and on how i was a bad person and and how this wasnt the place for me.

Ii ddidnt even ask her for anything. I had never felt \t as low as i did at

that moment. its was like someone decided I was no longer sick that i was some

pill seeking addict! that they made me into i never abused my meds i took what

was perscribed to me as I was supposed to. I just dont know what i did to cause

this. I have been in bed since at a loss. I have activly searched to help myself

and do to the lack of knowledg from the health care professionals in my area I

will not live out the rest of my life as long as most patients with cml but

maybe that was my purpose. Anyway that you for all the support and care i hope

to talk to you again soon love dana

>

> Dear D Poirer,

> I don't know your name, but am using your user name. You have come to the

right place and whomever said you need to see a doctor in pain management is

correct.

> I think most of us feel pain in our joints and if we have fibromyalgia or

arthritis, it will be more difficult to deal with. That is a lot of pain

medication, but with an expert, you should be able to live a more normal life.

> As for your doctor, it sounds like he should be brought up before the

Medical Board for your area. You just cannot abandon a patient as he has. I

had a doctor abandon me, but he was not my oncologist. There must be another

doctor who would see you to take care of your CML. There are agencies who

donate cancer meds, so there is no reason for you to be without your meds. Do

we have any patients on this list who could contact D and help her with her

problem - someone who lives in her area. You can contact her directly as well.

> My dentist has a blood disease and from taking so many transfusions, he

suffers from iron overload. The doctors and nurses told him he was a drug

addict, that he couldn't be in that much pain. He had a conference with them

and told them more about his disease, as apparently he knew more than they did.

Have you considered acupunture. Some people swear by it, as well as hynoposis.

I don't know your solution, but these are merely suggestions. I hope you get

the help you need soon. You are not whining, I see it as a cry for help, but

since we are not doctors, we can only offer you our own experiences.

> I had a lot of pain on Sprycel and perhaps you should change to something

else, something that is in a trial so you would not have the expense of paying

for the drugs for CML. There is an Ariad trial and also SKI 606, could you look

into those? Of course your local doctors may not be able to enroll you if they

are not specialist in CML. There drugs are normally obtained at research

hospitals until they are approved by the FDA and then anyone can prescribe them.

Once in a trial, your drugs would be furnished free as long as you took that

drug. I don't know if this helps you, but it is what I have experienced.

> There are trials going on in San Francisco and Los Angeles, so you might

want to contact those medical centers, also you may want to contact the City of

Hope, but the last time I looked at their website, the doctors I saw were all

trained in transplants. I don't know which is closer to you or if you are able

to travel. There are also pilots who fly patients to their destination if they

are cancer patients. Corporate Angels also fly patients if you can make your

appointments at the same time as their flights. Just Google " aviation

charities " and you will come up with several avenues. http://www.flyingma

g.com/contactus/ 584/aviation- charities. html

> Good luck and best wishes, we will keep the light on for you if you need

help.

> Hands & hearts,

> Lottie Duthu

>

October 10, 2009

That is completely despicable! Report that doctor to the state licensing bureau!

That is, after you find good care for yourself and get to feeling better. As if

it wasn't bad enough to be ill and frightened and in pain -- you shouldn't have

to be abused. Especially by a someone who is supposed to be a healer.

btw, on the Leukemia and Lymphoma website, there is a link you can click to find

a caregiver in your area, and also find a support group. The two people who run

my support group -- one is a nurse and one is a social worker -- have helped me

with all manner of problems. I'm sure they could connect you to a decent GP as

well.

Whereabouts do you live, Dana? One of us may know someone good in your area that

you could see.

Kind regards,

From: booxtwo@...

Date: Fri, 9 Oct 2009 09:40:57 +0000

Subject: [ ] Re: Pain Meds

wow thank you Lottie, My name is Dana I am sorry if i forgot

that part. I will happily try some of the suggestions you offered. I am at a

loss at the doctor situation but i figure if I sit here as long as i can and

tolirate as much as i can without the meds I will get sick enough to go through

the R.R.and then maybe I could get a little help. I saw a new GP a few days ago

and I had never been treated so bad in life! I didnt get through the door five

min. and the nurse came in asked me why i was there, I told her about my disease

as much as she would let me get out i told her all the meds I was coming off of

told her I had been peeing blood for a week and belived my liver to be enlarged

and that point she looked at me in disgust and left the room, my 14 year old

daughter looked at me and asked me why she treated me like that at that point i

wasnt asking for anything but alittle advise as what to do about all the things

going on . the doctor comes in tells me that she had no idea what i was tring to

get away with and that i didnt belong in her office that i needed to go check

myself into a rehab and went on and on how i was a bad person and and how this

wasnt the place for me. Ii ddidnt even ask her for anything. I had never felt

\t as low as i did at that moment. its was like someone decided I was no longer

sick that i was some pill seeking addict! that they made me into i never abused

my meds i took what was perscribed to me as I was supposed to. I just dont know

what i did to cause this. I have been in bed since at a loss. I have activly

searched to help myself and do to the lack of knowledg from the health care

professionals in my area I will not live out the rest of my life as long as most

patients with cml but maybe that was my purpose. Anyway that you for all the

support and care i hope to talk to you again soon love dana