Re: Hi I'm the new girl here!

[Guest guest]

shannon wrote:

>Hello! I am very excited to be a part of this group, nobody has even

>heard of PA when I tell them what I have. I started showing signs of

>P when I was five years old, no one else in any family history that I

>know of has ever had P. When I was 12 I had terrible pain in my jaws,

>I was sent to a special dentist and he wanted to break my jaws and

>rewire them because of some deformity. Thank God I didn't do it! By

>the time I was 17 my knees where killing me. Then a few years later I

>started getting terrible neck pain. No one listened to me, not even

>my mother. At 18 I started seeing a RA and they told me I had

>juvinile (sp) arthitis, even though there was no RA factor in my

>blood. For years I was treated for this, and never had a RA factor in

>my blood. My P has always been really bad, a lot of horrible break

>outs! My nails too. Finally, in 2000 after I gave birth to my twins a

>new RA finally said I had PA. My neck has permanent damage and I have

>very limited mobility in my neck. my hands always show damage in

>xrays even though I don't have any pain in them. My new thing that is

>less than a year old is my right hip. I had a bone scan that proved

>that my hip is so bad that I have very little cartlidge left.

>Anyway my question for you all is do you notice that your pain in a

>new place comes very quickly and out of the blue and then you find

>out that there is already extensive damage, like with my hip?

>Also, I have a weird tingling in my left foot a lot and it feel numb

>quite a bit.

>The other thing I was relieved to hear is that some of you feel like

>you are in a haze sometimes. I have had very strange episodes like

>that and I thought I was losing my mind. I'm only 29 and I feel like

>I am doomed!

>Thanks,

>

>

>

Hi and welcome.

You are not doomed. All of us feel like that at times. As for your

question about the fast onset of pain and then you find things are

further along than you realized. That can be " normal " too. Our bodies

handle pain in different ways and some don't send you the message until

late in the game. When my PA attacks a new joint it tends to be very

intense pain for a few days or weeks or months and then it subsides. It

will later come back to the usual course of..... one day your neck is

killing you, the next may be my back and then a elbow or a knee. That's

one of the things that can make this very hard for others to " understand "

As for the tingling in your foot, Is it the same side your hip is

involved? If so, my guess would be it's caused by the swelling around

your hip joint is bad enough to affect the nerve that is running by

there. My hips are a mess, on the left, when it's acting up my leg will

go tingling and numb from the hip joint, down the leg. It was bad enough

in the beginning that I had two back operations because they thought I

had a slipped disc. It wasn't. It was the normal course for the disease,

at least in my case. This is just me, for you it may be different, ask

your doctor. (refer to last sentence)

I don't want to get off on a rant here but it sounds like you have

already learned this. Find a good Rheumy. Just because they call

themselves a Rheumatologist doesn't mean they are. Bad doctors cause

more damage to some of us than the disease causes. It took almost 30

years for me to get a correct diagnosis because of a pervasive problem

in the field, enough said.

What kind of meds are you on. Have you heard about Remicade, Humara or

Enbrel? They are new, very expensive and treat the disease and not the

symptoms. I got next to no relief from all the poisons they offer up

before I got a real Rhuematologist that knows what they are doing.

The haze you feel like you're in. You are in good company. Along with

blurry vision at times. Feel off balance at times? Fatigue so bad you

just can't get moving. If you lurk on these groups for a while you will

realize that you really are not alone at all. I wish I had found them

long ago. It would have made some very bad years bearable.

I'm whats called a full time lurker, I read all the posts that folks

write on this and the Remicade forum. I just don't respond very often.

Yours caught me because of the " lets operate on your jaw " thing.

Downright scary.

Please don't rely on what I or anyone else on these forums say. Educate

yourself and never let anybody tell you what your problems are. You know

what they are and just need help or guidance with them.

Duane

[Guest guest]

>

> >Hello! I am very excited to be a part of this group, nobody has

even

> >heard of PA when I tell them what I have. I started showing signs

of

> >P when I was five years old, no one else in any family history

that I

> >know of has ever had P. When I was 12 I had terrible pain in my

jaws,

> >I was sent to a special dentist and he wanted to break my jaws

and

> >rewire them because of some deformity. Thank God I didn't do it!

By

> >the time I was 17 my knees where killing me. Then a few years

later I

> >started getting terrible neck pain. No one listened to me, not

even

> >my mother. At 18 I started seeing a RA and they told me I had

> >juvinile (sp) arthitis, even though there was no RA factor in my

> >blood. For years I was treated for this, and never had a RA

factor in

> >my blood. My P has always been really bad, a lot of horrible

break

> >outs! My nails too. Finally, in 2000 after I gave birth to my

twins a

> >new RA finally said I had PA. My neck has permanent damage and I

have

> >very limited mobility in my neck. my hands always show damage in

> >xrays even though I don't have any pain in them. My new thing

that is

> >less than a year old is my right hip. I had a bone scan that

proved

> >that my hip is so bad that I have very little cartlidge left.

> >Anyway my question for you all is do you notice that your pain in

a

> >new place comes very quickly and out of the blue and then you

find

> >out that there is already extensive damage, like with my hip?

> >Also, I have a weird tingling in my left foot a lot and it feel

numb

> >quite a bit.

> >The other thing I was relieved to hear is that some of you feel

like

> >you are in a haze sometimes. I have had very strange episodes

like

> >that and I thought I was losing my mind. I'm only 29 and I feel

like

> >I am doomed!

> >Thanks,

> >

> >

> >

> Hi and welcome.

> You are not doomed. All of us feel like that at times. As for your

> question about the fast onset of pain and then you find things are

> further along than you realized. That can be " normal " too. Our

bodies

> handle pain in different ways and some don't send you the message

until

> late in the game. When my PA attacks a new joint it tends to be

very

> intense pain for a few days or weeks or months and then it

subsides. It

> will later come back to the usual course of..... one day your neck

is

> killing you, the next may be my back and then a elbow or a knee.

That's

> one of the things that can make this very hard for others

to " understand "

> As for the tingling in your foot, Is it the same side your hip is

> involved? If so, my guess would be it's caused by the swelling

around

> your hip joint is bad enough to affect the nerve that is running

by

> there. My hips are a mess, on the left, when it's acting up my leg

will

> go tingling and numb from the hip joint, down the leg. It was bad

enough

> in the beginning that I had two back operations because they

thought I

> had a slipped disc. It wasn't. It was the normal course for the

disease,

> at least in my case. This is just me, for you it may be different,

ask

> your doctor. (refer to last sentence)

>

> I don't want to get off on a rant here but it sounds like you have

> already learned this. Find a good Rheumy. Just because they call

> themselves a Rheumatologist doesn't mean they are. Bad doctors

cause

> more damage to some of us than the disease causes. It took almost

30

> years for me to get a correct diagnosis because of a pervasive

problem

> in the field, enough said.

>

> What kind of meds are you on. Have you heard about Remicade,

Humara or

> Enbrel? They are new, very expensive and treat the disease and not

the

> symptoms. I got next to no relief from all the poisons they offer

up

> before I got a real Rhuematologist that knows what they are doing.

>

> The haze you feel like you're in. You are in good company. Along

with

> blurry vision at times. Feel off balance at times? Fatigue so bad

you

> just can't get moving. If you lurk on these groups for a while you

will

> realize that you really are not alone at all. I wish I had found

them

> long ago. It would have made some very bad years bearable.

>

> I'm whats called a full time lurker, I read all the posts that

folks

> write on this and the Remicade forum. I just don't respond very

often.

> Yours caught me because of the " lets operate on your jaw " thing.

> Downright scary.

>

> Please don't rely on what I or anyone else on these forums say.

Educate

> yourself and never let anybody tell you what your problems are.

You know

> what they are and just need help or guidance with them.

> Duane

>

Thank you Duane for responding! Actually the foot that goes numb is

the opposite leg. But who knows what is going on with that hip that

I don't know about yet, you know. I was told by a rheumy years ago

that I seem to have a high tolerance for pain. I guess this is a

good thing but I don't know.

I'm not on any medications really except a prescription Ibuprofen. I

didn't like the last rheumy I saw, it just seems like such a battle

to find the right one.

Have you had any hip replacements? My family doctor said he wants me

to try to put it off until I'm in my 40's. We'll see..

Thanks,

[Guest guest]

>>

>Thank you Duane for responding! Actually the foot that goes numb is

>the opposite leg. But who knows what is going on with that hip that

>I don't know about yet, you know. I was told by a rheumy years ago

>that I seem to have a high tolerance for pain. I guess this is a

>good thing but I don't know.

>I'm not on any medications really except a prescription Ibuprofen. I

>didn't like the last rheumy I saw, it just seems like such a battle

>to find the right one.

>Have you had any hip replacements? My family doctor said he wants me

>to try to put it off until I'm in my 40's. We'll see..

>Thanks,

>

[Guest guest]

wrote:

>

>

>

>>Thank you Duane for responding! Actually the foot that goes numb is

>>the opposite leg. But who knows what is going on with that hip that

>>I don't know about yet, you know. I was told by a rheumy years ago

>>that I seem to have a high tolerance for pain. I guess this is a

>>good thing but I don't know.

>>I'm not on any medications really except a prescription Ibuprofen. I

>>didn't like the last rheumy I saw, it just seems like such a battle

>>to find the right one.

>>Have you had any hip replacements? My family doctor said he wants me

>>to try to put it off until I'm in my 40's. We'll see..

>>Thanks,

>>

Hi

I think women have a higher tolerance for pain. I haven't decided

whether its for childbirth or putting up with men. hehehe I'm doing

research on that one, my wife and 4 daughters think childbirth is

nothing compared to living with me. I suspect they are seeing my

" research " as bogus. I will never talk. No hip or joint replacements

for me. Couldn't afford it if I had to. Ibuprofin...... Ick. There are

much better things than that stuff out there. Personal opinion of

course. After 30 plus years of misery I'm on Remicade now and haven't

looked back. The only other thing that ever helped was sleeping on a

glacier. Not possible for most folks and you can't do it every night. A

note on that, Other countries have gone the opposite than western

medicine does ( imagine that) We tend to go for the heat and relaxation.

A doctor told me when I first started fighting this to try very cold

with very physical exertion. " Take up mountaineering " , I think they have

a point. Take a look at how Japan handles arthritis patients.

Keep up the fight and never let down. It also helps if you can have a

sense of humor about it all.

Duane

ps this got cut off this morning for some reason so it is a re-run,

sorry if you all get it twice

duane

[Guest guest]

In a message dated 01/02/2006 11:12:54 GMT Standard Time, jdelazzer@...

writes:

The other thing I was relieved to hear is that some of you feel like

you are in a haze sometimes. I have had very strange episodes like

that and I thought I was losing my mind. I'm only 29 and I feel like

I am doomed!

Hi ,

Welcome to the group. A lot of us would recognise the " haze " you mentioned.

lol

What medication are you on just now. A lot of the meds out now can make so

much of an improvement that you wouldn't believe.

Probably most of us have felt as if we are doomed on occasion because of this

disease. I hope being part of this group will help you cope with it .

With me any joint pain would be slight at first, but would then build until

it was just about unbearable. This would last for several months and then would

slowly ease off. When the swelling went down I would be left with damaged

joints but not too painful, at least compared to the earlier pain.

Keep in touch and let us know how things are going for you.

Take care,