new to group

[Guest guest]

I have severe active RA with sudden onset January 17, 1997, a day I

will never forget, and since every day has been one of pain,

sometimes almost unbearable and stiffness. Telling my story and

experiences would take pages & pages. I'm new to the support system,

and beware new to the pc as well. Apologize in advance for any

mistakes I make, not intentional. Reading thru posts I wanted to

respond to the one having problems sleeping when prednisone was

added. I was on 20mg of pred. daily for almost 2 years and very

gradually I'm now on 5mg. I had a difficult time sleeping on the

higher doses of pred would sleep only 2 hours at a time which

according to my rheum. caused my bad muscle pain, not able to get to

a stage 4 of sleep. Also twice I had mega doses by IV over a 3 day

period and was up for days. My rheum. prescribed 20mg of Paxil and

25mg of amitryiptiline, both to be taken before bedtime and after a

while I did start sleeping a lot better and longer and eventually my

muscle pain is not near as bad. I also was found to have a blood

disorder called myelodysplasia at the same time so I don't know if

some of my symptoms could also be from that. It's a pre-leukemia

condition for which I take a chemo drug every 3 days to try and

prevent developing the full blown leukemia. I control my pain with

oxycontin and norco for which I could not function without. I didn't

take them for a long time but finally got so tired of the pain and

now I'm glad I'm taking them. My life is so much better taking them.

They don't take the pain completely away, but eases it enough so that

I can do a little bit to be productive. I'm on metho. injec 25mg

weekly plus a lot more meds, if anyone wants to know I can tell you.

I also started the remicade a little over a year ago with slow

improvement after several increases-no overnite miracle like some

experience but I'm grateful for any kind of improvement I get. I may

not get to the pc everyday but when I do I will see if you have any ?

for me and I'll read the posts to see if I CAN Offer a little advice

for what it's worth. I am now fighting an infection in my eye from

the same virus that causes fever blisters which sounds like another

member may have experienced. I would be interested to know if its

the same. I've also already had both hips replaced if anyone is

thinking about having that done. Sorry this is so long. I hope to

learn from each of you and hope I can add something for you as well.

God bless you all and I find prayer helps me soooo much. -

[Guest guest]

Hi Donna!

Welcome to our group. I have RA and fibromyalgia among other maladies. I

had shin splints. My doc told me to get some good arch supports to put in

my shoes. It has really helped! He said I was " standing funny " .....LOL and

the arch supports help me stand straighter.

Anyhoo......that helped me. I hope you are able to find something that

helps you!

Carla

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

From: DONNA [mailto:bubblez57@...]

Sent: Friday, August 08, 2003 7:28 PM

Rheumatoid Arthritis

Subject: New to group

Hi all, my name is Donna and I have mixed xonnective tissue disease,

for those of you who are not familiar with this, to break it down I

have ra, lupus, and fibromyalgia.

Anyway, there are plenty of ppl who are worse off than me so I am not

complaining. Actually, my main reason for coming into this group is

for some issues that I am hoping someone may be able to help me with.

Okay, here it goes, I have 2 dogs that I love more than anything and

our daily walks are the highlight of their days, as well as mine. I

have never been much into exercise, but when I take my girls out for

a walk, somehow it is not exercise then, do ya'll know what I mean.

Well, here lately, I have been getting severe shin splints and my hip

hurts so bad that I am barely able to take them around the block,

before we walked 2-3 mi. a day. And I know the hip pain at least, is

because I am having a flare up and it is one of the rougher ones that

I have, but I have never heard of shin splints being a problem with

what I have. So, does anyone else suffer from them and if so have you

found any way to relieve the pain and discomfort. Really anything

that anyone can tell me would be so greatly appreciated.

Thank you all so much and I hope that maybe I can return the favor

and be of help to someone else one day.

Donna

[Guest guest]

This might be reaching, but some people have problems with their shoes and this shows up in many different ways. A podiatrist or orthopedic doctor might be able to give you some help. I don't really know about women's shoes but I have heard that Birkenstocks or New Balance are often good for people with RA. Good luck and God bless.

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

From: DONNA

Rheumatoid Arthritis

Sent: Friday, August 08, 2003 4:27 PM

Subject: New to group

Hi all, my name is Donna and I have mixed xonnective tissue disease, for those of you who are not familiar with this, to break it down I have ra, lupus, and fibromyalgia. Anyway, there are plenty of ppl who are worse off than me so I am not complaining. Actually, my main reason for coming into this group is for some issues that I am hoping someone may be able to help me with.Okay, here it goes, I have 2 dogs that I love more than anything and our daily walks are the highlight of their days, as well as mine. I have never been much into exercise, but when I take my girls out for a walk, somehow it is not exercise then, do ya'll know what I mean. Well, here lately, I have been getting severe shin splints and my hip hurts so bad that I am barely able to take them around the block, before we walked 2-3 mi. a day. And I know the hip pain at least, is because I am having a flare up and it is one of the rougher ones that I have, but I have never heard of shin splints being a problem with what I have. So, does anyone else suffer from them and if so have you found any way to relieve the pain and discomfort. Really anything that anyone can tell me would be so greatly appreciated. Thank you all so much and I hope that maybe I can return the favor and be of help to someone else one day.Donna

[Guest guest]

Hi Donna,

I have been selling shoes for about 8 years and have JRA and have

some suggestions for you. I strongly recommend a good pair of New

Balance walking or running shoes. They come in a variety of styles

and prices. I personally would recommend the 804-809 series (all new

balance shoes are numbered. The higher the number, the more 'high-

end' the shoe). They are trail-runners, but work great for walking

because they are more sturdy than regular running shoes. New balance

also comes in a vareity widths to fit any shoe size. I wear a men's

wide (e) to accomodate my very wide and frequently swollen feet.

Additionally, you need to replace your athletic shoes about every 6

months. This is probably the #1 cause of shin splints and other foot

aliments. I know its expensive to replace them often, but it will

save your feet in the long run.

Most Dr's will also suggest new balance for athletic shoes. They are

well made and will help your feet tremendously. Sorry if this sounds

preachy or parental, I am just very passionate about footwear and

most women wear horrible shoes that cause permanent disabilites and

pain.

Good luck,

--- In Rheumatoid Arthritis , " DONNA " <bubblez57@y...>

wrote:

> Hi all, my name is Donna and I have mixed xonnective tissue

disease,

> for those of you who are not familiar with this, to break it down I

> have ra, lupus, and fibromyalgia.

>

> Anyway, there are plenty of ppl who are worse off than me so I am

not

> complaining. Actually, my main reason for coming into this group is

> for some issues that I am hoping someone may be able to help me

with.

>

>

> Okay, here it goes, I have 2 dogs that I love more than anything

and

> our daily walks are the highlight of their days, as well as mine. I

> have never been much into exercise, but when I take my girls out

for

> a walk, somehow it is not exercise then, do ya'll know what I mean.

> Well, here lately, I have been getting severe shin splints and my

hip

> hurts so bad that I am barely able to take them around the block,

> before we walked 2-3 mi. a day. And I know the hip pain at least,

is

> because I am having a flare up and it is one of the rougher ones

that

> I have, but I have never heard of shin splints being a problem with

> what I have. So, does anyone else suffer from them and if so have

you

> found any way to relieve the pain and discomfort. Really anything

> that anyone can tell me would be so greatly appreciated.

>

> Thank you all so much and I hope that maybe I can return the favor

> and be of help to someone else one day.

>

> Donna

[Guest guest]

Hi Donna, I also was suffering shin splints. I new I needed new shoes

but put it off until a few weeks ago.

I wear New Balance shoes exclusively. I wear the 991 running shoe, it

is very expensive ($119 pr) but I don't have the apin any longer. I

buy them when they have a buy 1 get the 2nd at 50% off nad get two

pair at a time.

They really help me.

Good luck and God Bless

Jay

> > Hi all, my name is Donna and I have mixed xonnective tissue

> disease,

> > for those of you who are not familiar with this, to break it down

I

> > have ra, lupus, and fibromyalgia.

> >

> > Anyway, there are plenty of ppl who are worse off than me so I am

> not

> > complaining. Actually, my main reason for coming into this group

is

> > for some issues that I am hoping someone may be able to help me

> with.

> >

> >

> > Okay, here it goes, I have 2 dogs that I love more than anything

> and

> > our daily walks are the highlight of their days, as well as mine.

I

> > have never been much into exercise, but when I take my girls out

> for

> > a walk, somehow it is not exercise then, do ya'll know what I

mean.

> > Well, here lately, I have been getting severe shin splints and my

> hip

> > hurts so bad that I am barely able to take them around the block,

> > before we walked 2-3 mi. a day. And I know the hip pain at least,

> is

> > because I am having a flare up and it is one of the rougher ones

> that

> > I have, but I have never heard of shin splints being a problem

with

> > what I have. So, does anyone else suffer from them and if so have

> you

> > found any way to relieve the pain and discomfort. Really anything

> > that anyone can tell me would be so greatly appreciated.

> >

> > Thank you all so much and I hope that maybe I can return the

favor

> > and be of help to someone else one day.

> >

> > Donna