pain

November 4, 2000

-

You are in my prayers. I have been meaning to write. I

have experienced some of the things you have- many of

them in the past year to two years - especially the

blood clotting issues and big time anemia. That is why I

can empathize with Elaine. I am grateful to be able to

work - but there are days when I wonder what I have

accomplished - in light of what I think I should - and

how I can even think of doing one more thing. I don't

look forward to the post operative pain but in a weird

sort of way - I don't mind the idea of 6 weeks off at

Christmas. Enough about me - Tell I notice your Cuddle

Kritters url. I haven't gone there but are you a big

animal fan. There is a wonderful Prayers for Pets site I

belong to - if you would like info.

Love,

November 4, 2000

,

Thanks for the words of encouragement. I think I'm going to like it

here.Yes a BIG time animal lover! My mother doesn't understand at all. We

have 23 dairy goats-my children show them. They are being bred now and we

will be kidding for the month of March-14 bred. The babies livein a box

indoors for a few days and are bottle raised for 3 months. We have 5 cats,

4 dogs (3 of which are miniature schnauzers who will be bred in the Spring),

1 rabbit, 2 ferrets, 1 chinchilla and 2 gerbils. The rabbit, ferrets and

chinchilla came to me when the woman that owned them couldn't care for them

anymore-before my RA. I also do crafts-thus the Kuddle Krafts site!

I have made many concessions to the illnesses-like a cleaning person and

online shopping but I still feel guilt about not being able to do many

things that were routine. AS far as the blood clotting, I have lydin-5

factor and after my stroke 4 years ago, I had DVTs and a venacave filter but

take coumadin too because I had small clotts in my lungs and other smaller

peripheral ones following a surgery. I have had 5 major abdominal surgeries

and 1 craniotomy in the last 6 years. Another in January coming up! The

anemia is really no big deal for me but I take 3 iron pills a day-had a

colonoscopy but no problems there so they can't figure out why I don't

absorbe iron well.

*** Temple***

Kuddle Kritters Farm

Chelmsford, MA

dat2352@...

www.homestead.com/kuddlekraft/index.html

www.homestead.com/kuddlekrittersfarm/index.html

www.homestead.com/kuddlekrittersdairygoats/index.html

May 25, 2001

where is your pain. maybe a hot bath or shower will help ease the pain a

little.

kathy

May 26, 2001

Today it is in all my joints, Neck, shoulders, elbows, hips, knees.

But my hands, wrist anckles and feet are the worst. I think I will

soke in a bath, even tepm. relief is better than none.

Thanks,

> where is your pain. maybe a hot bath or shower will help ease the

pain a

> little.

>

k

May 26, 2001

When the prednisone worked previously, , were you taking the same

amount?

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

From: <cwade@...>

< >

Sent: Friday, May 25, 2001 4:59 PM

Subject: [ ] PAIN

> Gosh...I am in so much pain today...I just can't stand it. I thought

> the Prednisone would have kicked in by now. I am at my wits end. I

> am sure my husband and mom would just wish I would shut up about it.

> Is it possible for prednisone not to work? It worked before!?! I

> don't know what to do.

>

May 27, 2001

Yes. sorry it took so long to get back to you. We wnt to the

carnival today. Really over did it.

> When the prednisone worked previously, , were you taking

the same

> amount?

>

> ----- Original Message -----

> From: <cwade@r...>

> < @y...>

> Sent: Friday, May 25, 2001 4:59 PM

> Subject: [ ] PAIN

>

> > Gosh...I am in so much pain today...I just can't stand it. I

thought

> > the Prednisone would have kicked in by now. I am at my wits end.

I

> > am sure my husband and mom would just wish I would shut up about

it.

> > Is it possible for prednisone not to work? It worked before!?! I

> > don't know what to do.

> >

> > Chri

June 1, 2001

10 mg per day.

> How much prednisone are you on?

> ~Rainy

>

> ----- Original Message -----

> From: <cwade@r...>

> < @y...>

> Sent: Friday, May 25, 2001 2:59 PM

> Subject: [ ] PAIN

>

> > Gosh...I am in so much pain today...I just can't stand it. I

thought

> > the Prednisone would have kicked in by now. I am at my wits

end. I

> > am sure my husband and mom would just wish I would shut up about

it.

> > Is it possible for prednisone not to work? It worked before!?! I

> > don't know what to do.

> >

June 2, 2001

How much prednisone are you on?

~Rainy

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

From: <cwade@...>

< >

Sent: Friday, May 25, 2001 2:59 PM

Subject: [ ] PAIN

> Gosh...I am in so much pain today...I just can't stand it. I thought

> the Prednisone would have kicked in by now. I am at my wits end. I

> am sure my husband and mom would just wish I would shut up about it.

> Is it possible for prednisone not to work? It worked before!?! I

> don't know what to do.

>

June 10, 2001

,

I hope you're feeling better today. I know it's hard to be left alone with a

toddler, although I only have one. Twice the everything, I feel for you.

All though on your good days, you get twice the love Hugs. Tery

June 11, 2001

I get twice the love everyday:O) They are the sweetest little boys.

See picture of them in Files. This morning I was getting ny

Dressed and , the littlest one, kept coming up to me and

wrapping his little arms around my neck, giving me big hugs. The

pain just sort of melts away for an instant.

I am really hurting bad lately, the Elavil, Prednisone and MTX are

not doing their job. It is so frustrating and so hard to be

patient. I am hangin in there. I am reading a book caled " Living

with Rheumatoid Arthritis " by Shlotzhauer and McGuire. It is really

informative. I also purchased " Conquering Rheumatoid Arthritis " by

F. Lee. I am trying to educate myself so I can take part in

my treatment.

Well, I gotta get to work.

> ,

> I hope you're feeling better today. I know it's hard to be left

alone with a

> toddler, although I only have one. Twice the everything, I feel

for you.

> All though on your good days, you get twice the love Hugs. Tery

June 12, 2001

Thanks Rainy

It's one of those hurry up and wait situations, I have only been on

the MTX going on 4 weeks and the Elavil for 1 week. She said it

could take up to 3 months for the MTX to start working and 3 weeks

for the Elavil. I am just very unpatient and don't have a very high

thresh hold for pain. I just found out yesterday that my doc does

not prescribe any pain meds either. So, I guess I am SOL. Probably

for the best, I don't need anything clouding my perseption. It's

distorted enough without the meds.

> > > How much prednisone are you on?

> > > ~Rainy

> > >

> > > [ ] PAIN

> > >

> > > > Gosh...I am in so much pain today...I just can't stand it. I

> > thought the Prednisone would have kicked in by now. I am at my

wits

> > end. I am sure my husband and mom would just wish I would shut

up about

> > it. Is it possible for prednisone not to work? It worked

before!?! I

> > > > don't know what to do.

> > > >

June 13, 2001

That is how much I take and it works pretty well for me. Is it still not

working for you? You might ask your doctor if you can take 20 mg for a

couple days, go down to 15 mg a couple days and back down to 10 mg.

Sometimes it helps to be on a higher dose then go back down to where you

were. I really hope something is working for you now!

You're in my thoughts!

~Rainy Sue

[ ] PAIN

> >

> > > Gosh...I am in so much pain today...I just can't stand it. I

> thought the Prednisone would have kicked in by now. I am at my wits

> end. I am sure my husband and mom would just wish I would shut up about

> it. Is it possible for prednisone not to work? It worked before!?! I

> > > don't know what to do.

> > >

June 13, 2002

Dear Mjclimo,

While I only have pain sometimes, I have taken Elavil for years at 50 mg

which does seem to help. (also has a sedating effect for sleep) When my

back pain was so bad I also took Ultram, I think that is what you meant

(?) it worked only on the back pain, did nothing for the feet - or

shooting pains. I seem to recall the Ultram is pretty pricey too, so is

the Neurontin I took for a year. Neurontin worked well for me on the

shooting/electrical type neuropathy pain. I don't have that pain now

since going back to Elavil.

Many of the tricyclic antidepresssants like Elavil (amitriptyline) also

have an added bonus that they work on nerve pain. My Dr. recently gave

me samples of Sinequan that is the same class of medication, and we are

trying a trial with this.

Is your pain from nerve, joint or something else? From my experience I

found that determing the TYPE of pain I was having determined which

medication would be best. Also, when I started Elavil, it took some

adjusting of dose to find which helped the most. I started at 75 I

think, too 100, to 50, to 25, then after about 6 months Dr. and I felt

stable at 50.

I'm so sorry you have so much pain all the time. Also no sleep. I hope

you and your Dr. can find something soon. ~ G

mjclimo446462002 wrote:

> Has anyone else have pain all the time and what do

> they take?

June 13, 2002

Hi everyone........

I suffer from nerve pain/tingling/numbness in my right foot (the one I call

the bad one). Sometimes I am tossing and turning for an hour or more

because this pain is just hard to deal with. I do not take anything now.

Finally I fall asleep and in the a.m. it is gone....to start the new day

again and experience the same thing again the following night. I try not to

concentrate on the pain because that seems to make it worse.

Terry Little

littlet@...

Challenges Met Together here at ! Charcot Marie Tooth Universal

Services - for you, your loved ones, the medical community, and anyone

who wants to learn how CMT/HMSN affects each of us through experiential

sharing.

June 13, 2002

I have twitching in my hands and feet a lot and have had it for

years, my hands bother me the most during the day time, my feet at

night, it comes and goes, I don't take anything for it, I also have a

deep aching pain in my legs, hips and shoulders, sometimes it is just

a matter of changing position or moving that helps it stop and

sometimes it won't go away at all even with the pain meds and anti-

cramping medicine, try massaging!

June 14, 2002

Terry:

I suffer from nerve pain mostly in my left foot sometimes at night. Most of the

time when this happens

my foot feels like it is on fire. My doctor told me to be careful about my

shoes. If they

are old and wearing --my foot tends to rotate in because of my drop foot--this

pain/burning

sensation can be partially caused from my shoes and the way I walk. So check

your shoes.

He also suggested soaking my feet in cool water or put ice on them for a while

to help.

Good Luck.

Jane

September 7, 2004

FlashyKathy,

Pease tell me you didn't let the dentist put mercury in those fillings. I just spent hundreds of $$ taking those out of my mouth!

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

From: low dose naltrexone

Date: Tuesday, September 07, 2004 14:19:38

Cc: Hi Everyone

Subject: [low dose naltrexone] Pain

Hi Everyone,

I went to the dentist last week to have to small cavities filled. I did not stop taking LDN. One part froze the other only froze half way. So I felt the one being drilled and the pain. Next time I will ask for more freezing.

FlashyKathy74

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

September 7, 2004

> Hi Everyone,

>

> I went to the dentist last week to have to small cavities filled. I did not

stop taking LDN. One part froze the other only froze half way. So I felt the one

being drilled and the pain. Next time I will ask for more freezing.

>

> FlashyKathy74

=============

Kathy,

Before dental work do not take LDN the night before. It will ot hurt you to

miss the dose.

September 7, 2004

Kathy.. is your dentist blind?

Or are you trying out for tough girl of the year award?

I hope not I really hope not! Whenever my freezing isn't enuf and I wince at the procedure my dentist imediatley stops and asks "Did you feel that?" If I nod then he just applys more freezing and within minutes we are going along great again.

LDN has not given me any problems at all with Dentistry.

Reg.

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

From: low dose naltrexone

Date: 09/07/04 08:51:29

Cc: Hi Everyone

Subject: [low dose naltrexone] Pain

Hi Everyone,

I went to the dentist last week to have to small cavities filled. I did not stop taking LDN. One part froze the other only froze half way. So I felt the one being drilled and the pain. Next time I will ask for more freezing.

FlashyKathy74

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

September 8, 2004

I am not aware that the anesthetics used for dentistry are narcotics. I do not believe carbocaine, lidocaine, novacaine, etc are opiate derivatives. Am I wrong? If they are then anyone who has been in for dentistry could test positive for narcotics on a random drug test...

JT

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

From: Bren

low dose naltrexone

Sent: Tuesday, September 07, 2004 1:30 PM

Subject: [low dose naltrexone] Re: Pain

> Hi Everyone,> > I went to the dentist last week to have to small cavities filled. I did not stop taking LDN. One part froze the other only froze half way. So I felt the one being drilled and the pain. Next time I will ask for more freezing.> > FlashyKathy74=============Kathy, Before dental work do not take LDN the night before. It will ot hurt you to miss the dose.

February 14, 2007

I have had only one GB attack and I've now done 3 flushes. The first

was a 9 day flush (which I published here). I doubt you'll have to

worry about driving to work because most of the days are simply

preparation, e.g. eating different foods, taking supplements, etc. The

actual flush part, when you drink olive oil and lemon juice, is the last

part of the flush. Simply time it so that you will be drinking this on

a weekend or whenever you have 1-2 days off work.

Amber

M wrote:

>

> I've never done the flush, am kind of afraid since I have to drive

> 1/2 hour to work and don't know how my body will react to it.

>

August 20, 2007

Hi Don,

I'm sorry to hear about your pain. Have your doctors tried to

identify the cause of the pain or are they just giving you pain meds

and sending you home? If it were me, I would want to get a full work

up to see if there is something specific that is causing the pain ie,

gall stones, enlarged spleen, ulcer, diverticulitis, etc (there's no

shortage of possible causes for the type of pain you are

describing).

If you can identify a cause, then you can hopefully treat the problem

and get rid of the pain altogether. It may have nothing at all to do

with CML.

Goodluck,

Tracey

>

> I hope some of you can comment on my inquiry. I was diagnosed

with

> CML in Feb. of this year. After some initial side effects from

the

> Gleevec I've reached a point where I do not experience any major

> symptoms and my CBC counts are " normal " . What I am experiencing

is a

> constant and continuing level of pain and discomfort. I had been

on

> pain meds for a while but my doctor thought that I should " wean "

> myself from them. I would like to know if others are

experiencing

> what I can only describe as a general feeling of pain throughout my

> abdomen and back. It's not focused on my bones as it was

previously,

> but more like a total body feeling. Sorry for the poor

> description............but perhaps one of you can relate and

describe

> it better.

> So, anyone having the same type of pain and discomfort? And, if

so,

> what is your doctor doing to help you?

> Thanks,

> Don

>

August 20, 2007

I too have a lot of body pain...although I've had a hip replacement with

prosthesis and fused ankle that may be the culprit, I also have daily severe

pain in my rt leg that puts me down for 3-4 hours. I'm taking Percocet or

Darvecette at onset of the pain, not routinely, as my Onc doesn't want me to

take any over-the-counter meds because of possible liver damage. Then I also

have generalized joint aches that feels like the " flu " sometimes after taking

Gleevec. I've started taking gleevec with the evening meal and that seems to

give me more day hours of feeling good. So I too would appreciate knowing how

others are dealing with chronic bone pain.

Thanks,

Margaret

donanddawn47 <donanddawn47@...> wrote:

I hope some of you can comment on my inquiry. I was diagnosed with

CML in Feb. of this year. After some initial side effects from the

Gleevec I've reached a point where I do not experience any major

symptoms and my CBC counts are " normal " . What I am experiencing is a

constant and continuing level of pain and discomfort. I had been on

pain meds for a while but my doctor thought that I should " wean "

myself from them. I would like to know if others are experiencing

what I can only describe as a general feeling of pain throughout my

abdomen and back. It's not focused on my bones as it was previously,

but more like a total body feeling. Sorry for the poor

description............but perhaps one of you can relate and describe

it better.

So, anyone having the same type of pain and discomfort? And, if so,

what is your doctor doing to help you?

Thanks,

Don

Margaret ,

mpraymond@...

margaret-raymond@...

August 21, 2007

I also struggle with pain in my lower back and in my right thigh. It is

very painful at times and i do take advil for it. I have come to accept it

as a side effect of the Gleevec.

chris in minn

dx Dec 03

400 mg Gleevec

43 yrs old

>From: " donanddawn47 " <donanddawn47@...>

>Reply-

>

>Subject: [ ] Pain

>Date: Mon, 20 Aug 2007 14:38:04 -0000

>

>I hope some of you can comment on my inquiry. I was diagnosed with

>CML in Feb. of this year. After some initial side effects from the

>Gleevec I've reached a point where I do not experience any major

>symptoms and my CBC counts are " normal " . What I am experiencing is a

>constant and continuing level of pain and discomfort. I had been on

>pain meds for a while but my doctor thought that I should " wean "

>myself from them. I would like to know if others are experiencing

>what I can only describe as a general feeling of pain throughout my

>abdomen and back. It's not focused on my bones as it was previously,

>but more like a total body feeling. Sorry for the poor

>description............but perhaps one of you can relate and describe

>it better.

>So, anyone having the same type of pain and discomfort? And, if so,

>what is your doctor doing to help you?

>Thanks,

>Don

>

August 21, 2007