Young People With PA

[Guest guest]

Jim,

I am a bit older than you at 37, but I was a little younger than you

when I was first affected by it. My advise is to see a good

Rhumetologist ASAP. Hopefully one with a good ongoing continuing

education. I wasted over a year going to other docs that didn't

help as much. I was told by a couple docs to limit your cafeine

intake. That seems to help some with the pain. I have recently

started taking msm. It doesn't seem to have any bad affects, so I

thought I would try it. The thing to remember is that everyone's

body reacts to medication in a different way. Some things that

work really well for others won't help you at all. Some people on

these boards are really Psyched up on one drug or another, and if you

try them and it doesn't work, don't get discouraged. It can take

some time to get all of the meds right. At one point in my life, I

couldn't even walk. Now i am living a fairly active life.

Hope this helps you

> I am 24 yrs old and was wondering whether there is anyone of a

> similar age with pa to talk to as there isn't anyone my age I know

> who can relate to the way i feel due to pa. i had been an active

> person until about a year ago, when pa flared up, and would like to

> know what would be the best way of dealing with it and getting on

> with a normal life.

[Guest guest]

hi,

i am 26 yrs old and was officially diagnosed with PA when i was 21.

i'll admit that the first year or two was extremely difficult, not

having a firm hold on the disease and not having the wonderful

rheumatologist i have today. i went through a whole deal of meds

and even tried the holistic approach but none of that really did

much. the anti-inflammatory is good, but not enough for me. so

back in august i made the HUGE decision to go on methotrexate - very

nervously so - but so far i am VERY pleased with the results. i

feel GREAT and only have a random day here and there when i feel

much pain. (i also take relafen and glucosamine/condroitin daily).

as silly as this may sound, the biggest annoyance that comes out of

this is the fact that i cannot drink any alcoholic beverages while

on metho. being so young, going out socially for a beer or simply

having some wine with dinner was once one of my favorite pasttimes.

now i just sit and sip water while i watch my friends drink the beer

that i so crave. now of course i realize this is a very small price

to pay, but it is an annoyance, and i cant wait till i can enjoy a

drink again. currently, my biggest goal is to be off the metho for

my wedding in august - i wouldnt mind having a nice frozen drink

when im honeymooning in aruba!

just remember: you're not alone in being so young and having PA. it

IS manageable - just be sure to surround yourself with positive

people and find yourself a rheumatologist who you trust.

take care,

michele

[Guest guest]

Hi, about your question. My husband has pa and has had it for a very long time

but was jst diagnosed about 2 years ago. he is also 26. things are hard

sometimes. we have a 2 1/2 year old daughter. when she was first born he

couldn't do much with her but now that he is on the right combo of meds he is

able to do so much. he has his days like everyone else but alot of his recovery

has been faith. rachel

[Guest guest]

Dear all mixed up,

I have been lurking and reading for several weeks now. Your opinion

is yours, however, your remarks are condescending and patronizing.

The fact that you attempt to justify your use of illegal substances

is sad. The bottom line is people with PA and P need support. Though

I am new to this site, I have learned there are wonderful, caring,

nurturing, and generous people here that want to help you and each

other. Shame on you for using it as a forum for something as

undignified as a debate on drugs. oh, and a sidenote, I don't think

I would be feeling very safe if I had to be rely on a firefighter

who might be high to save my home, or my life.

RE your ability to fulfill your career issues, I must point out, not

all PA and P sufferers are resigned to a life of incapacitation.

Unfortunately, many are. You have no idea at this point what your

prognosis really is. Take each day as it comes, and be grateful you

can accomplish whatever goals and tasks you assign yourself. It is

trite, and cliche and some days just not possible...but you have to

attempt to be positive and look for ways to adjust. You will make

yourself nuts if you don't.

To all of you that responded to my initial posting, thank you. I am

very well informed and well armed with knowledge as I go to my Derm

for the fist time this Monday. I picked up orthotics from my

Podiatrist last week, and these have brought incredible relief to my

left heel, so much so, I did not even follow the process of

increasing wear time daily, just put them in my shoes and they felt

so wonderful, I wore them all day the first day! I am looking

forward on Mon to choosing a Rheum with my Derm...she, my Derm is

ranked #1 in our State by her peer physicians and I will be happy to

pick her brain for a good referral!

to my Pug friend, your 12 steps to helping handle people with

chronic pain have helped me and my family alot. My daughter, a

Student Nurse at a local hospital, seemed to avoid the topic of my

health, and would actually change the subject if I mentioned

anything! She told me a few nights ago, with tears in her eyes, that

it just is very hard to see this happening to me. She said she can

cope with it when it is a stranger, but not her Mom. She is a

wonderful young lady who understands now, that she has to cope with

it for dear old Mom!!!

hope everyone is continuing you take a bite out of life each day. I

think about all of you, pray for us all, and hope for good things to

come.

annie and the pug herd

[Guest guest]

Hi Allmixedup,

I wanted to say hi and to let you know that all the people here

care. I know it doesn't always seem like it, but they all really do

indeed care. I also wanted to tell you that there are many jobs in

the fire sciences that one with PA might be able to do (depending on

you individual condition). I had P at 13 and started the pain of PA

at 23. While a senior in high school, I went to the National Fire

Academy in Emmitsburg, MD and recieved most of my fire training there

from the University of land. When I graduated high school I was

a Certified Firefighter 3 in the state of land. I was a

firefighter/EMT for nine years before I had bow out due to my

condition. But there are so many others things in the fire services

that can be done that don't require one to be in tip top physical

shape. And with the advances in treatment options, there's new hope

everyday that the next drug may be the one that works for you! It is

very hard to keep positive and I have had (and still have) my boughts

with getting depressed, but I have a great primary care doctor who

really wants to keep that aspect in total control (as best as we can

do). I would really recomend trying to find a doctor who is

understand of that aspect of the disease, and don't hind your down

times from the doc. They really can and want to help you through

it! Along the same line, talking with people, especially in support

groups like this, can be very helpful! Good Luck, and remeber to

explore every option before giving up. And then when you do give up,

talk to someone else about it as they might know another option you

hadn't even thought about. (Personally, my Dad is that person for

me, he always comes up with options I never even thought of!) Hope

to read more posts from you, .

[Guest guest]

i know lots of upstanding people, ceo's of big co's, nurses, doctors, lawyers, a

couple of people who are owners of large businesses, who smoke but don't tell,

in fear of people who don't get it, but just judge. you would never even know

unless they told you because they don't fit the " look " that people associate

" smoking " with.

[Guest guest]

Please don't complain on this website about not being able to

consume foreign substances because of your PA or medication. That

isn't fair to those who have real problems related to PA. Having to

give up weed doesn't rank on my top ten list of earth shattering

things to give up one day give because of PA!

Darren

[Guest guest]

man you seriously need to chill out, it was relevant to the post, i

wasnt complaining about giving it up, give it a rest, maybe some of

the things that bug you dont rank on MY top ten list, i see people

talking aobut how they can't do things they enjoy(ed) like sew

anymore, and i dont start ranting and raving about sewing not being

on my top ten list of things i cant do anymore and not a real

problem and how its a giant insult to those with PA or P, you know

why? its rude and im not going to start insulting people i dont know

in a SUPPORT group... Why dont you read the original post before you

start critizing me, man

[Guest guest]

Hey...I do not know what everyone is freaking out about but I hope that

everyone realizes each of us has our own cross to bear and if " we " don't agree

and

can't agree to disagree then maybe " we " should just hold judgment on what " we "

feel is right as compared to someone else who has lived " it " ?

The simple and " oh so easy to understand " fact is we are all here for

support. Give it if you can and if you can't DON " T...you know? ;-)

(Va.)

[Guest guest]

I am not one to get involved in conflict, but I must say that this one seems

to have gone on too long. Stress is bad for all of us, would it be too much

to ask for us to all agree to drop this for now?

Thanks,

A

[Editor's Note: I think--at least I hope--everyone has had their say now. I had

been away for a couple of weeks, and was surprised--when I went to edit some

posts--to read some that embodied the kind of unpleasantness that makes for

ruffled feathers and hidden agendas to be carried out later. I was more

surprised to note that somehow, my moderator colleagues hadn't addressed it

already, but the ones I came across may have been the most problematic, so it

was my place to say something. I am all for peace in the valley, but not at any

any price; That's how the bullies, the vulgar, and the pushy take over (not that

I think we have any, yet)--when the good folk of the valley don't fight back.

D.