pain

[Guest guest]

My mother would get pain in the same areas after blood transfusions.

Her doctor would give her a shot of steroids and after awhile Oxyconton

(not sure how you spell it) twice a day. When the pain got really bad

he added oxycodone every three hours. The spleen does get enlarged and

the liver doesn't work so well after awhile. Keep asking your doctor

for pain meds. My husband is on Lyrica and Amitriptlyn(with Morphine

tablets and nausea meds for when the pain is bad.)Pain management

should be your doctors number one priority.

[Guest guest]

, Lottie is right. I emailed you to ask about the pain and what causes it.

I can be of help to you because I have LOTS of experience with pain/pain

clinics/meds, etc.? So feel free to email me, privately, if you'd like. Lynne A.

[ ] Pain

Dear ,

This is a crazy disease sometimes, but you are by no means crazy. Some things

come and go and some disappear never to resurface. Not being a scientist I can

offer no suggestions, as not all questions have a ready answer, but there is

usually someone who knows something. Just keep asking questions and searching.

When I go to ER, the doctors recognize my name and every chance they get, they

come and talk to me about CML. They commend me for learning as much as I can.

Many times they are working blind, because big Pharma does not talk about their

trial drugs. I've been more or less on trial drugs for over 11 years, and it is

incumbent upon me, myself and I to try to keep up with them. There is a lot you

can learn by reading ASCO reports as well as ASH.

I know my local oncologists do not attend these conferences and I have

personally shamed them for not driving 60 miles to attend, even if they only had

1 patient with CML. So the ball always falls in our court to do our part and

share that information because sometimes we are all we have to go on.

For extreme pain, I know some take Oxycodone for bone pain. This is something

you need to discuss with your doctor and if he/she doesn't want to stand by you,

find one who will, even if you have to see an orthopedist or rheumatologist.

There are pain clinics all over the country and they give you Kenalog

injections, but they are not conservative enough as far as I am concerned. They

are much too quick to start pumping you up. I went to one pain clinic that

filled me up with so many injections I could not sleep for a week at a time,

just little cat naps while watching TV. You are so wired you walk the floors.

They also want to sedate you so they can make extra money. The last one I had, I

absolutely refused sedation and they actually tried to talk me into it. I had

lived through several before and I wasn't sedated, even by the same doctor who

now owns the pain clinic. The first two injections failed and they kept giving

me more appointments. They don't even bother to try and find the root cause. I

haven't been in years and my pain level remains the same. For the most part, you

can find your chiropractor can do as much for you. My rheumatologist is the most

conservative doctor I know when it comes to giving you any shots, so I have

relief for a short time until it wears off.

Reach out to others, , and they in turn will reciprocate. You will always

have someone you can turn to, we are all here for you and each other. If

everyone would talk about their own experiences, we would have a lot more

understanding about all the different facets of this disease. Always look out

for and get the best that is out there that is within your reach. I'm

sure you know that there are pilots who will fly you to your destination at no

charge. The American Cancer Society also has resources they can refer you to for

getting free or low cost rooms if you travel out of town. The hospital you go to

has social workers who can assist you, so help is out there, you just have to

look for it and above all, don't be too proud to ask for help. Love is free.

Peace and comfort to you ,

Lottie

[Guest guest]

Again, I am sorry if this is a duplication, but I received a message that this

did not go through the first time.

Dear ,

This is a crazy disease sometimes, but you are by no means crazy. Some

things come and go and some disappear never to resurface. Not being a scientist

I can offer no suggestions, as not all questions have a ready answer, but there

is usually someone who knows something. Just keep asking questions and

searching. When I go to ER, the doctors recognize my name and every chance they

get, they come and talk to me about CML. They commend me for learning as much

as I can. Many times they are working blind, because big Pharma does not talk

about their trial drugs. I've been more or less on trial drugs for over 11

years, and it is incumbent upon me, myself and I to try to keep up with them.

There is a lot you can learn by reading ASCO reports as well as ASH.

I know my local oncologists do not attend these conferences and I have

personally shamed them for not driving 60 miles to attend, even if they only had

1 patient with CML. So the ball always falls in our court to do our part and

share that information because sometimes we are all we have to go on.

For extreme pain, I know some take Oxycodone for bone pain. This is

something you need to discuss with your doctor and if he/she doesn't want to

stand by you, find one who will, even if you have to see an orthopedist or

rheumatologist. There are pain clinics all over the country and they give you

Kenalog injections, but they are not conservative enough as far as I am

concerned. They are much too quick to start pumping you up. I went to one pain

clinic that filled me up with so many injections I could not sleep for a week at

a time, just little cat naps while watching TV. You are so wired you walk the

floors. They also want to sedate you so they can make extra money. The last

one I had, I absolutely refused sedation and they actually tried to talk me into

it. I had lived through several before and I wasn't sedated, even by the same

doctor who now owns the pain clinic. The first two injections failed and they

kept giving me more appointments. They don't even bother to try and find the

root cause. I haven't been in years and my pain level remains the same. For the

most part, you can find your chiropractor can do as much for you. My

rheumatologist is the most conservative doctor I know when it comes to giving

you any shots, so I have relief for a short time until it wears off.

Reach out to others, , and they in turn will reciprocate. You will

always have someone you can turn to, we are all here for you and each other. If

everyone would talk about their own experiences, we would have a lot more

understanding about all the different facets of this disease. Always look out

for and get the best that is out there that is within your reach. I'm

sure you know that there are pilots who will fly you to your destination at no

charge. The American Cancer Society also has resources they can refer you to

for getting free or low cost rooms if you travel out of town. The hospital you

go to has social workers who can assist you, so help is out there, you just have

to look for it and above all, don't be too proud to ask for help. Love is free.

Peace and comfort to you ,

Lottie

[Guest guest]

Hi im 38, Ive had back problems all my life but only reciently been

diagnosed with RA.

I had an x-ray to conferm.

I take Devils Claw i also have Voltaren 3 times a day it's a gel as im

illergic to brofen.

The doctor has also given me Dihydrocodine x2 every 6hours so im a bit

spaced out but the pain is still there.

I have RA in my spine & pelvis it's very painful i can hardly walk or

dress myself most of the time.

Im all new to this RA, is there anyone that can give me advice i hate

being spaced out as i have a 9 year old daughter who's my Angel she

helps me in so many ways with getting dressed etc... she should have a

medal.

Hazel.T

[Guest guest]

Hi Hazel. I think this is a

well-recognized Non-Steroidal Anti-Inflammatory Drug (NSAID) that can help the

symptoms of RA but I’m not sure that it does much if anything to slow the

permanent joint damage that usually comes with RA unless it is treated early

and aggressively. It should help the symptoms but if joint damage continues

there will be nothing that will then help. Joint replacement would be the

next step and that does not really restore full usage of the joint, but for

people who need it there will be significant improvement. To avoid the

need for future joint replacement you need a more aggressive treatment.

Please get a second opinion from a board-certified rheumatologist. It is

important to see a true specialist. God bless.

From: Rheumatoid Arthritis [mailto:Rheumatoid Arthritis ] On Behalf Of hazel

Sent: Wednesday, March 26, 2008

9:14 AM

Rheumatoid Arthritis

Subject:

Re: pain

Hi, ive been to see the doctor & im now taking

Misofenac Arthrotec

diclofenac/misoprostol, the doctor is going to look at my medical &

xray resaults as in new to the surgery.

Is there any major problems with this medcuation?

Hazel

[Guest guest]

Lottie

Not given anything for the pain as yet unless it persists.

Just putting heat packs etc on hip and shins.

I have printed out everyones suggestions of drugs and experiences for

bone pain so I can take to the haem. if I have to see him for hte

pain - now really a dull ache and most disappeared.

Thanks

Weather

Cold is not the word - freezing - sun out but no heat in it - it is

the cold prevailing winds. Go straight thru you. Even the horses

are not moving around much - just conserving energy and converting to

heat. Cats are inside curled up and Abbie is in her kennel

Our State had a major gas explosion off the North West Shelf so we

cannot use our gas heater - saving for cooking only.

You should see me - there are gloves, beanies, windcheaters and socks

on.

That is one of the side effects that I have found - excluding the

weather is that I am always cold.

keep well all

Sue

-- In , " Lottie Duthu " <lotajam@...> wrote:

>

> Dear Sue 0.001,

> I have bone pain in my shins from time to time. It comes and

goes. Is the doctor giving you anything for it? I take Etodolac.

As for my joints, well that's all the time. I had a Kenalog

Injection about 3 weeks ago, but that's worn off already and ready

for the next one, but he only does it every 3 months. I can barely

climb the curb unless I can hold on to something. How is the weather

down under, still cold? It is very hot and muggy here.

> xoxoxoxox

> Lottie

>

>

[Guest guest]

Hi Sue,

I wanted to mention another pain relief possibility for you. I discovered that

with bone pain (especially in my lower back) that my muscles contracted due to

tension from the pain. That compounded things because I had both bone pain and

muscle pain. So, I used Icy Hot pain patches that release pain relief in the

area of pain. It really helped me and I'm sure you have either Icy Hot or

BenGay or some other pain patches you can use there Down Under.

Cheers,

[ ] Re: Pain

Lottie

Not given anything for the pain as yet unless it persists.

Just putting heat packs etc on hip and shins.

I have printed out everyones suggestions of drugs and experiences for

bone pain so I can take to the haem. if I have to see him for hte

pain - now really a dull ache and most disappeared.

Thanks

Weather

Cold is not the word - freezing - sun out but no heat in it - it is

the cold prevailing winds. Go straight thru you. Even the horses

are not moving around much - just conserving energy and converting to

heat. Cats are inside curled up and Abbie is in her kennel

Our State had a major gas explosion off the North West Shelf so we

cannot use our gas heater - saving for cooking only.

You should see me - there are gloves, beanies, windcheaters and socks

on.

That is one of the side effects that I have found - excluding the

weather is that I am always cold.

keep well all

Sue

-- In , " Lottie Duthu " <lotajam@...> wrote:

>

> Dear Sue 0.001,

> I have bone pain in my shins from time to time. It comes and

goes. Is the doctor giving you anything for it? I take Etodolac.

As for my joints, well that's all the time. I had a Kenalog

Injection about 3 weeks ago, but that's worn off already and ready

for the next one, but he only does it every 3 months. I can barely

climb the curb unless I can hold on to something. How is the weather

down under, still cold? It is very hot and muggy here.

> xoxoxoxox

> Lottie

>

>

[Guest guest]

Dear Mom, have you tried Ultram for the joints? It works for me and I don't feel

tired when I am on it. some say it is addictive but I haven't had a problem with

that as I can go for days without it. We have finally drilled a well at the

lake, so I have been busy up there. You will be in my thoughts on the Fourth, as

there will be shrimp in the Low Country boil! Be well! love, Lynn F.

[ ] Pain

Dear Sue 0.001,

I have bone pain in my shins from time to time. It comes and goes. Is the

doctor giving you anything for it? I take Etodolac. As for my joints, well

that's all the time. I had a Kenalog Injection about 3 weeks ago, but that's

worn off already and ready for the next one, but he only does it every 3 months.

I can barely climb the curb unless I can hold on to something. How is the

weather down under, still cold? It is very hot and muggy here.

xoxoxoxox

Lottie