Re: Chris

[Guest guest]

my rheumy told me last year that RA can infact affect parts of the body that no one would think of, like the ribs. It attacks the ligaments, cartilage & muscle, thereby making all those areas sore. the sad thing w/this disease is that it's so very misunderstood. It isn't just a *bone* disease. They have finally classified it as a form of cancer. Also, the meds given for it attack you in other ways. It destroys your immune system. It's attacking the sack around my heart & my spleen. The meds are destroying my tummy. It has created those calcifications in my lymph nodes. None of that life threatening, just extremely painful. And as you may have read in post of other members, it causes FMS, CFS to name a few. B/c you are in the beginning stages, try to stay on top of everything. Do your research, make your doc talk to you, make sure they explain every single thing. when I was first diagnosed, the medical field didn't have a clues about JRA. My father was an invalid from it, but they didn't know it was hereditary. So to answer your question, yes the RA could be making your ribs sore. Two days ago I had a pain go through my left rib cage that made me nearly pass out. TG I was in bed :-))

Renae

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

From: A-soul@...

Rheumatoid Arthritis

Sent: Wednesday, April 10, 2002 5:24 AM

Subject: Re: I'm a newbie here =))

Renae wrote: I look forward to *getting to know* some new friends here:-)))Hi Renae, welcome to the list. I'd like to hear what the tests revealabout the pain in your tummy and ribs. I've had problems with pain inmy ribs over the years and so far the doctors haven't figured out whatit is. I'm glad you found this list, with your positive attitude anddealing with RA for so many years you will be a big help for those ofus who are just begining this journey. Chris

[Guest guest]

O.K. Sorry about that. I thought I was doing it correctly, but apparently my

novice computer skills are failing. I'll get it straight.

Theresa

[Guest guest]

> I take milk thistle to strengthen my liver. Every time my rheummy

upped my MTX dose, my liver enzymes went nuts. The milk thistle

helped and the next liver test would come back normal.

I've read good things about milk thistle and asked my rheumy if I

could take it with MTX. She didn't know anything about it and

discouraged me. What were your rheumy's thoughts about it?

Sierra

[Guest guest]

Milk thistle pulled me thru a tuff time on MTX. I had liver enzymes shoot

up and the milk thistle helped get things normal again. MTX made me bleed

also. It was very scary. My body could not handle it.

Kay

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

From: " snowdrift52003 " <snowdrift52003@...>

<Rheumatoid Arthritis >

Sent: Thursday, May 20, 2004 7:09 AM

Subject: Re: Chris

>

>

> > I take milk thistle to strengthen my liver. Every time my rheummy

> upped my MTX dose, my liver enzymes went nuts. The milk thistle

> helped and the next liver test would come back normal.

>

> I've read good things about milk thistle and asked my rheumy if I

> could take it with MTX. She didn't know anything about it and

> discouraged me. What were your rheumy's thoughts about it?

>

> Sierra

>

>

>

>

>

>

[Guest guest]

> I told her about the milk thistle but she didn't care if I took

it. Said she didn't know if it would be effective.

Did your doctor know anything about it? Dr. Weil recommends it

for anyone taking prescription meds...

Sierra

[Guest guest]

I guess my last email got lost in Internet land so here it goes again.

You are not going crazy. I now this topic has been talked about before and

I for one have the same exact complaints. Sometime the scalp hurts just to

touch it. I wear my hair in a ponytail most days as I cant stand the hair

touching my face. I have a lot of skin problems right now. Washing or

brushing

cant be very uncomfortable. Not always but some days are pretty bad.

I also have lost all the pigment in my hair from the Gleevec so my once

Strawberry beautiful hair is now platinum/white blonde. Looks kind of funny

since its growing in that way and my old " real " hair color on the bottom is

red.

I get a lot of questions about it and just tell people thank you as its too

long of a conversation to explain. I have also lost pigmentation to my face

where all my freckles are fading and my face is very pale (ghostly) as well

as all hair on my body including eye lashes and eyebrows are this depigmented

" white " blonde.

So, you are not losing your mind. Just one of the many weird symptoms we

come across as this Gleevec history goes on.

35

CML 5/13/05

Gleevec 800mg

Wife and mother of 3 (11,8,6)

************************************** See what's free at http://www.aol.com.

[Guest guest]

Chris-

I know exactly what you mean. I am too the point now where I have so much

going on that new things don't phase me now. Example- Last night my legs

hurt so bad I though chopping them off would feel better (wouldn't do it ), so

I

got in the bath with HOT water. Does tend to help relieve my bone pains.

No sooner got it that I had to get out to go get a Zofran for my nausea. Got

back in the water and noticed I had a fine appearing rash all over my body.

I just giggled to myself. What next....

I have learned to put this into perspective and just deal with the here and

now of what I have control over. The symptoms seem to add up after a while.

It seems like the next thing is coming once the old symptoms level out.

maybe that is just how this disease goes? I don't know.

Lately I have had such skin changes.. My arms (forearms) are a mess.

Everything I bump or touch, my skin is peeling off. I bruise and tear the skin

so

much easier then I used too. The skin is very thin. I have no less then

7-8 open arms at all times now. I seem to get them when not realizing it such

as loading or unloading the dishwasher, washer or dryer. Simple things that

I never had to really pay attention too.

I am glad that we have this site to bounce things off of each other and

understand that we aren't alone in this and that there is others out there that

suffer from the same things and are having the same side effects, whether they

are understood yet or not. We have them. Sometimes you just need that

reassurance that someone else understands.

Take care of yourself-

Jen

************************************** See what's free at http://www.aol.com.

[Guest guest]

Chris-

I agree with you completely. Thank god for Gleevec.

We will get through all this. Its character building

************************************** See what's free at http://www.aol.com.

[Guest guest]

, thanks so much for letting me know. I have so often wondered if I am

just starting to make things up. But every time that particular pain cycle

starts, I realize again how real it is. I really wonder what causes this to

happen -- what is the Gleevec doing that causes it....

just thinking about it all. Thanks again.

chris in minn

Re: [ ] Chris

I guess my last email got lost in Internet land so here it goes again.

You are not going crazy. I now this topic has been talked about before and

I for one have the same exact complaints. Sometime the scalp hurts just to

touch it. I wear my hair in a ponytail most days as I cant stand the hair

touching my face. I have a lot of skin problems right now. Washing or brushing

cant be very uncomfortable. Not always but some days are pretty bad.

I also have lost all the pigment in my hair from the Gleevec so my once

Strawberry beautiful hair is now platinum/white blonde. Looks kind of funny

since its growing in that way and my old " real " hair color on the bottom is

red.

I get a lot of questions about it and just tell people thank you as its too

long of a conversation to explain. I have also lost pigmentation to my face

where all my freckles are fading and my face is very pale (ghostly) as well

as all hair on my body including eye lashes and eyebrows are this depigmented

" white " blonde.

So, you are not losing your mind. Just one of the many weird symptoms we

come across as this Gleevec history goes on.

35

CML 5/13/05

Gleevec 800mg

Wife and mother of 3 (11,8,6)

************************************** See what's free at

http://www.aol.com.<http://www.aol.com./>

[Guest guest]

Wow! Yours sounds so much like my journey. I'm also having a lot of leg pain

-- only ever my right thigh, though. Had exactly the same thought the other day

-- felt like chopping it off, it hurt so badly. Then, the next day, little or

nothing. Go figure....

I also use Zofran and need it surprisingly often. but that is also sporadic.

Perspective is indeed the key to all of this. I always figure well, if a

symptom gets rough, wait a bit and it'll be something else, soon enough....

All told, I do feel blessed, though, that there is something like Gleevec. so,

I guess a little griping is okay for me as long as I keep it in perspective.

Thanks, Jen, for sharing your experiences with me-- all of us. It does indeed

help to know we're not going this alone...

chris

Re: [ ] Chris

Chris-

I know exactly what you mean. I am too the point now where I have so much

going on that new things don't phase me now. Example- Last night my legs

hurt so bad I though chopping them off would feel better (wouldn't do it ), so

I

got in the bath with HOT water. Does tend to help relieve my bone pains.

No sooner got it that I had to get out to go get a Zofran for my nausea. Got

back in the water and noticed I had a fine appearing rash all over my body.

I just giggled to myself. What next....

I have learned to put this into perspective and just deal with the here and

now of what I have control over. The symptoms seem to add up after a while.

It seems like the next thing is coming once the old symptoms level out.

maybe that is just how this disease goes? I don't know.

Lately I have had such skin changes.. My arms (forearms) are a mess.

Everything I bump or touch, my skin is peeling off. I bruise and tear the skin

so

much easier then I used too. The skin is very thin. I have no less then

7-8 open arms at all times now. I seem to get them when not realizing it such

as loading or unloading the dishwasher, washer or dryer. Simple things that

I never had to really pay attention too.

I am glad that we have this site to bounce things off of each other and

understand that we aren't alone in this and that there is others out there

that

suffer from the same things and are having the same side effects, whether they

are understood yet or not. We have them. Sometimes you just need that

reassurance that someone else understands.

Take care of yourself-

Jen

************************************** See what's free at

http://www.aol.com.<http://www.aol.com./>