RE: PA & PAIN DIALOGUES (to Fran, , et al)

[Guest guest]

Dear and ,

Thanks for the kind words on pain tolerance. I agree that PA is one of the

worst pains I have ever experienced. One reaction I just love and I get

this from doctors, nurses and friends is " So you just have arthritis?

That's good I thought it was something serious. " How do you respond to

that? I personally just want to shoot them. I have a couple of friends who

just don't understand how " arthritis " could cause your pain to reach a level

that you would need morphine daily. I normally just tell them I'm as

surprised as you and I wish it wasn't the way. I also try to explain that

a lot of the pain is from the damage the arthritis has caused. (Like my

right jaw joint where the ball (condyle) of the socket is totally gone and

has started to regrow and fuse together.) I've explained how the muscles

spasm in result of the arthritis. At night my toes cramp something horrible

and so far I can still bend them back into place, but it's getting harder

and harder all the time. I tell them it makes my already fibromyalgia worse

or at least it seems that way. I also try to explain that I don't have

arthritis in one joint anymore, but in almost all of them. I seem to have a

flare in one joint or two every day. It moves around but some joints are

always bad, again probably from the bone damage. When do you finally decide

you need a surgeon to replace joints? I also have been thinking of seeing a

foot doctor for my foot pain. I know I won't ask for any medication from

him, but I was hoping he might have some aids that would help me walk

without as much pain. (My doctor wrote a prescription for a wheelchair, but

I still need to walk at home as much as I can to retain some type of muscle

tone.

I guess I've decided after being in pain management for 3 years that what

others think of me really doesn't matter anymore. I just need to do what I

can to survive each day and find enjoyment in my life when I can. I don't

make many promises of my time anymore since I never know when a " good day "

will come. Most people who really do love and care about you understand.

What I hate the most is you lose the ability to make new friends. Being

home bound does that to you I guess. Thank Goodness for the computer and

all the freedom it gives us.

, I know you said you hands hurt so bad and you were surprised by the

level of the pain. I had one of my pain doctors tell me that hands and feet

were two of the worst places because of all the nerves and there isn't much

muscle or fat to protect them. I know my hands can be really bad at times,

but luckily I don't have it every day there either. Thanks again for all

the support. This is a great site. Sincerely, Fran

[ ] PA & PAIN DIALOGUES (to Fran, , et al)

In a message dated 12/26/2003 11:48:23 AM Eastern Standard Time,

fran@... writes:

> Maybe I have a low pain tolerance

> compared to so many, but the pain is worse to me than any

> other

> problems...disfigurement, or early aging.<

Fran - I have dealt with kidney stones (which I'm told the pain has been

compared with childbirth, burns and gunshot wounds!) and a separated

shoulder, but still sometimes my PA seems worse. It's just that it's a

constant pain with no end in sight. It does much more of a number on your

head than some short term painful illness might. I think that's why

although the actual pain may be less, it bothers us more. Christmas Eve was

awful for me. I always wished that my hands would be effected by PA instead

of my knees and hips, figuring, you don't have to put any weight on your

hands, but let me tell you that hand pain is the worst I've had to deal

with. I actually took a percocette for the pain that night, and I don't

even take pain killers for the kidney stone pain. Our weather was cold and

wet - maybe that had something to do with it, but all I wanted to do was sit

and cry that night from the hand pain. Christmas day, it was gone! I don't

know how that works with PA, but I can have a joint that is hot and swollen

and the next thing I know it's normal again -

Anyway, I doubt you have a low pain tolerance - the PA pain can be worse

than a lot of other things. Gotta look on the bright side on days like that

though and hope the next day you wake up like I did without any pain. This

is a weird disease.

[Editor's Note: Four years ago, I (quite unintentionally) wound up

experimenting: How does PA pain in my case compare with a broken hip. I was

in an auto accident, and completely snapped my right hip bone

(intertrochanteric fracture, completely through the wide part of the bone).

Adrenalin and shock protected me for a while, but it was 13 hours before

they found the orthpedic surgeon, and as they were expecting him any minute,

and they didn't want me to be drugged up with pain-killers, they weren't

really doing anything for the pain. This situation (although I wasn't

thinking of the comparison at the time :-[ ) allowed for a rough comparison

of the pain (13 hours was long enough to imagine the pain was chronic)and

discomfort of the broken hip with the pain & discomfort of the PA in the

relevant and opposedly measurable joints.

This is extremely unscientific and personally biased; still, let me say

that the PA pain can and has, over some duration, be perceived as

commensurate with the broken hip. So for me, when I read Fran's, and the

others', pain challenges--and you can tell, roughly, their level of

perceived pain in the language used--in no way does it seem like Fran &

company have low pain tolerances; in fact--and I know quite a few doctors,

and have read in the literature as well--the evidence is that we don't give

ourselves enough credit thay way. Surely I'm not the only PA patient who has

been told (when talking about pain levels with the doc(s), and feeling

guilty) " good grief, stop beating yourself up! That you're still [doing

whatever you are], and also so and so (insert your own story)--if the

average, well person had to do that and contend with what you do, they'd

never make it! "

I have seen it time after time; it's been the topic on this board a couple

of times in my tenure. We feel guilty, or are made to feel guilty, in that

we " look OK " , but some things are a challenge for us. (There I sit, in a

crowded waiting room/subway/etc., and a pregnant woman comes in--do I not

stand?) This kind of thing happens, and we buy into it, think of ourselves

as not living up to minimalist " beast of burden " requirements for our age,

size and sex, and then, because we're decent people (the un-decent wouldn't

care), and it creates in us anxiety and depression.

I know none of us are going to go swaggering around, proclaiming that, all

things considered, we're pretty much super-men & -women. But we really ought

to at least accept--or take, were necessary, dadgum it--credit for the

strengths we have.

D.]

Please visit our Psoriatic Arthritis Group's informational web page at:

http://www.wpunj.edu/pa/ -- created and edited by list member

aka(raharris@...).

Also,in August 2001,list member Jack aka Cornishpro@... began

to conduct extensive research which he publishes as the " Psoriatic Arthritis

Research Newsletter " , monthly in our email and digest format. Many thanks to

Jack. Back issues of the newsletter are stored on our PA webpage as well as

the archives of the list.

Don't forget that the list archives comprise a tremendous amount of

information (Over three years of messages and answers).Feel free to browse

them at your convenience.

LET'S HEAR FROM SOME OF YOU LURKERS out there! If you have a comment or

question, chances are there is a person who has been around a while who can

help you out with AT LEAST an educated guess for an answer! If not,we can

steer you in the right direction with a good website to go to,

Blessings and Peace,

Atwood-Stack, Founder

Alan , Web & List Editor

Jack , Newsletter Editor

Pat Bias, List Editor

Ron Dotson, List Editor

Orin, List Editor

, List Editor

and any others who help in any way (thank you!)

[Guest guest]

In a message dated 12/27/2003 4:17:29 PM Eastern Standard Time, fran@...

writes:

> " So you just have arthritis?

> That's good I thought it was something serious. " How do

> you respond to

> that?

Fran - I usually respond by telling them I don't have " old people wear and tear

arthritis " I have " inflamatory arthritis " which is an autoimmune disorder where

my body is attacking the joints. Depending on the response to that, I either go

into more detail and bore them to death, or they finally shut up knowing that if

they ask questions I will go into more detail and bore them to death

It is difficult when people don't understand it though. My boss thinks I walk

funny and my joints hurt because I'm overweight. Granted, the weight doesn't

help, but that's not the major problem. He keeps telling me to lose weight and

my arthritis and kidney stone will be fine. Hmmm - funny how he knows more than

my doctors?

Anyway - hang in there. Keep healthy. I'm recovering from the flu right now,

and let me tell you, everything you have heard about it is correct. I had a

shot and still got it, and it knocked me on my butt bigtime - I went to the ER

to get a prednisone shot to take down the inflamation in my throat tissues - my

tonsils were touching each other! It's really nasty - stay well!!

[Guest guest]

In a message dated 12/30/2003 12:35:12 PM Eastern Standard Time, TADEL630

writes:

> My boss thinks I walk funny and my joints hurt because I'm overweight.

Granted, the weight doesn't help, but that's not the major problem. He keeps

telling me to lose weight and my arthritis and kidney stone will be fine. Hmmm

- funny

> how he knows more than my doctors?

...how is it that your boss thinks its acceptable to comment on either your

weight or your illness?? Do you have an HR dept? You might want to get it on

record that he makes those kind of comments...just strikes me as not very

professional...