Re: Jane

[Guest guest]

Jane; Sounds like you really need another d r. Even though we suffer with

pain, there should always be understanding from the physician. It is

ridiculous that you should have to suffer so. Tylenol just doesn't do the

trick. Mornings are so hard for me, it is in my spine, legs and now I

believe my neck as it hurts to move from one side to other. I always feel

like the tin man in the Wiz until the Lortab, etc kick in. Then with the

change in weather, some days are worse than others. I do hope you find a

sympathetic and understanding physician who will help you with your pain.

One thing that amazed me, on a recent trip to ER for an unrelated problem, I

noticed signs regarding pain management and levels. I never had a dr. ask me

to rate the pain I was in before from a scale of 1-10. Sooo, drs and ERs are

making progress and not just washing us off as complainers, addicts.

Good luck, I will keep you in my thoughts.

Jan in SC

[Guest guest]

Hi Jane:

Sounds like you need another rheumy - one who will

listen to you and take your pain seriously. Is there

any way you can get a second opinion from another

rheumy? It sounds like this one is just not listening

and does not really understand the pain RA can bring

on. Hope you are feeling less pain today.

Kathe in CA

--- Jane <jane_a_johnson@...> wrote:

>

> Hi,

> I did not know that the spine can be affected, I

> will also take this to my Rheumy also, I have been

> complaing about my lower spine for two yrs now and

> he said your back has nothing to do with RA.When 5

> got up today my whole left leg went numb down to my

> ankles on the back side, I hurt really bad, my doc

> don't believe in pain killers either, he does give

> me Tylenol-3, I have been taking 3 of them at a time

> to help me, but every time I ask for something, he

> gives me those, I am only sopose to take one every 4

> to 6 hrs, that is\a joke but I have no chocie. Have

> any ideas? I feel dumb for writing this.

> drwaymack <drwaymack@...> wrote:Wow, .

> I didn't know this. I know I will definately be

> talking to my rheumy on my next visit. Thanks for

> the info.

> Take care everyone,

>

>

> Re: [ ] Spinal involvement in RA

>

>

> > :

> >

> > Interesting article - I did not think that RA

> affected

> > the spine. I have been having some stiffness

> and

> > soreness in my neck but have been thinking it is

> from

> > stress due to the flare I am in - maybe it's

> more than

> > that? Hopefully not.....

> >

> > Kathe in CA

>

>

[Guest guest]

Hi Jan,

I'm just like you in the mornings. There's no way I could get started and

function without some sort of medication to lessen the pain.

Love and hugs,

Carol

Re: [ ] Jane

Jane; Sounds like you really need another d r. Even though we suffer with

pain, there should always be understanding from the physician. It is

ridiculous that you should have to suffer so. Tylenol just doesn't do the

trick. Mornings are so hard for me, it is in my spine, legs and now I

believe my neck as it hurts to move from one side to other. I always feel

like the tin man in the Wiz until the Lortab, etc kick in. Then with the

change in weather, some days are worse than others. I do hope you find a

sympathetic and understanding physician who will help you with your pain.

One thing that amazed me, on a recent trip to ER for an unrelated problem, I

noticed signs regarding pain management and levels. I never had a dr. ask

me

to rate the pain I was in before from a scale of 1-10. Sooo, drs and ERs

are

making progress and not just washing us off as complainers, addicts.

Good luck, I will keep you in my thoughts.

Jan in SC

[Guest guest]

Hi Tess!

Glad to see you back, I hope you are feeling better, I had Two nerve

blooks done today in my lower back, the pain Doc. said that you can get RA in

the joints of the spine and my Rheumy says you can't have it in your back, Who

to believe?I hope this works so I can keep on walking, have you had any of those

problems? or had any thing done like that? I hurt real bad from what he did, he

said I will be in pain up tp 3 weeks, ya.

What did you have all done that you were gone so long? I have not

been around to much because of the of my back problems.

Take care

(((((((((((((((((((((((((((((((((((((((((((((((((((((((HUGS)))))))))))))))))))))\

))))))))))))))))))))))))))))))

Jane_WI

tess_northwest@... wrote:Dear Jane...Congratulations on your approval for

disability. And I'm

glad your injection went well.

Hugs...

Tess

[Guest guest]

i am so sorry that you have had so much sorrow in your life lately. i hope

things get better for you very soon. kathy in il

[Guest guest]

Hi Jane,

Could it be cervical spondylosis(osteo of the upper spine) or spondyloarapathy

that your dr

mentioned? I couldn't sleep nights due to the pain and numbness in my arms and

hands due to

spondylosis causing a pinched nerve. My dr prescribed Elavil so I could sleep.

It doesn't keep me

awake anymore. Also going to the chiropractor (no twisting, just stretching and

using an

activator) helped to relieve the pain and headaches. I hope that you get some

help with your pain.

Iris

--- <Matsumura_Clan@...> wrote:

> Hello, Jane! Sorry that you were having trouble sleeping and that pain

> continues to be a problem.

>

> What about the Mayo idea?

>

> I'm not sure what your doc thought your secondary problem may be - I

> need more clues!

>

>

>

>

> [ ] Hi

>

>

> > Dear everybody, How are you guys tonite? It is 1:00am

> Thursday nite, well maybe early Friday morning, I can't sleep, I have

> that trouble once and a while.I had seen my Reumy last Thursday, a week

> ago and yes Iam just writting now, oh wait I did write the week before,

> ok, anyway, he said that he would take care of my meds, pain meds, I

> don't have to ask my general Doctor for them now, I will be seeing a

> pain clinic on may 20th, it will take for ever, I hope they will fix the

> shoulder, I have suffered long enough, I have been hurting there for

> 2yrs now.That is how I found out that I have RA.Other Ra sufferers, I

> have such cronic pain, am I a lone? do I have low pain tolerence? never

> did before, I don't know.I just wish I could feel like I did before 3yrs

> ago. I am volentering at the Elementry school in the fall, a day

> a week, or two, that is if they can fix my shoulder.I hope.

> or a if you are reading this, my Doc said something to the fact

> that I might have a secondary disease off the RA, it was along name,

> don't know what it is though, ok, that probally didn't help.Sorry, I

> must be getting tired after all. I wish all of you well, and

> good night

> (((((((((((((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))

> )))))))))))

> Jane

>

>

>

[Guest guest]

In a message dated 11/2/04 5:47:37 PM, coolcat1022@... writes:

  I am taking a narcotic for Fibromyalgia, (

What drug?

If you take it every day does the effect wear off?

Pris

Animal Planet's PET STORY features 30 minutes of Valentine's Performing Pigs Nov. 4, 2:30 PM ET.

www.valentinesperformingpigs.com

[Guest guest]

Thankyou Anita....for your reply. I hope you are feeling better

soon. It's awful to have multiple challenges like this.

Jane

> Hello Jane, I too only am able to take tylenol for headaches and

things as well. Although, not for the same reason as you. I am

allergic to aspirin and ibuprofen. My RF test was also negative, but

my x-rays showed severe inflammation in all my joints in my hands and

wrists. My rheumy said that is RA in my hands and wrists.

> Tylenol is also unacceptable with me as well. It does NOT work

for my headaches at all. I am taking a narcotic for Fibromyalgia,

(which was brought on by Chronic Fatigue Syndrome- which is what my

RA said he believes I have in the rest of my body.) I find out for

sure on Dec. 6th, but he is treating for those. Anyone take

Plaquinil for RA? I may have asked this before. If so, I am sooooo

sorry I do not remember. The CFS is causing me problems with my

short term memory.

> Well, I hope everyone is having a good week. Talk to you all

later.

>

> Anita ez

>

> owner of :

> PenPals4meandU

> Trading4meandU

> Swaps4meandU

>

> Co-owner of group:

> Swaps4meandU-Bad_Swappers_List

>

> Moderator of groups:

> makingfriendsfromallovertheworld

> http://.group/WeLovetoRAK

> **check us out**

[Guest guest]

Jane, so you have been only on remicade, has it taken the pain away? and how

will they determine if it is working, exray to see if the joints have gotten

worse???

thanks, rae

[ ] remicade side effects

>

>

> >

> >

> >

> > Hi yall, I am new to the group. I was wondering if anyone else

has

> > had this reaction to remicade- about 3 days after the infusion, i

get

> > really dizzy, like vertigo, and nauseated. I've been taking

phenergan

> > or dramamine to help with it. My doc seems a little baffled by the

> > reaction, apparently it's not real common.

[Guest guest]

Jane

I was diagnosed in May 05. I am currently on Gleevec 600mg. I am

considered " young " as well at 33. I see a local oncologist here in Las Vegas

Nevada

and I fly to Portland Oregon to see Dr. Mauro and Dr. Druker, who is the one

who developed Gleevec.

They have explained it to me as Gleevec, being the " home run in Baseball "

it is putting people in a deeper, longer remission where before people with

CML only had BMT to turn to and that was if you are lucky enough to have a

match.

There are some pretty tough complications that go along with BMT. Neither of

my doctors are talking about BMT for me. We have had lengthy discussions

about them. They say with Gleevec and the second generation drugs coming, that

CML will be like treating diabetes or heart disease. It will be a chronic

disease and that is without BMT. The mortality rate with BMT is something I

have to take into consideration as I have 3 small children. Gleevec has given

us all an alternative and I suggest to you to take your individual situation

and research as much as you can regarding the meds available and the BMT so

that you with your doctor can make the best decision for you. EDUCATE

yourself so that you can assist in your medical treatment. Be an advocate for

yourself.

I wish you best wishes on your road with CML and I hope you find lots of

support from others on the CML sites.

(33)

CML 5/13/05

Gleevec 600 mg

[Guest guest]

Thanks for that . It certainly bears out what I have been

reading which is why I am having problems with the fact that both

doctors still seem hell bent on going down BMT road. They keep on

saying " Gleevec is not a cure " . Well, I know that but the BMT feels

like a Kill-or-cure approach and I just don't feel ready for that.

Especially (fingers crossed) after 14 days of Gleevec I have not

felt any side effects besides feeling really tired.

At 33 you really are young ;-)!

I also have 3 kids (21, 18, 15) and despite thefact that they are

obviously older than your children, they have been really rattled by

my diagnosis. Hope your kids are coping...

Holding thumbs for your visit to see the experts

Jane

-- In , vegasrnjen@... wrote:

>

> Jane

> I was diagnosed in May 05. I am currently on Gleevec 600mg. I

am

> considered " young " as well at 33. I see a local oncologist here in

Las Vegas Nevada

> and I fly to Portland Oregon to see Dr. Mauro and Dr. Druker, who

is the one

> who developed Gleevec.

> They have explained it to me as Gleevec, being the " home run in

Baseball "

> it is putting people in a deeper, longer remission where before

people with

> CML only had BMT to turn to and that was if you are lucky enough

to have a

> match.

> There are some pretty tough complications that go along with BMT.

Neither of

> my doctors are talking about BMT for me. We have had lengthy

discussions

> about them. They say with Gleevec and the second generation

drugs coming, that

> CML will be like treating diabetes or heart disease. It will be

a chronic

> disease and that is without BMT. The mortality rate with BMT is

something I

> have to take into consideration as I have 3 small children.

Gleevec has given

> us all an alternative and I suggest to you to take your

individual situation

> and research as much as you can regarding the meds available and

the BMT so

> that you with your doctor can make the best decision for you.

EDUCATE

> yourself so that you can assist in your medical treatment. Be an

advocate for

> yourself.

> I wish you best wishes on your road with CML and I hope you find

lots of

> support from others on the CML sites.

> (33)

> CML 5/13/05

> Gleevec 600 mg

>

>

>