Re: PA advice please!!

[Guest guest]

Welcome, miktik. I haven't gotten to the end of the tunnel myself

yet, but I'm confident it's there. The road there is the

medications. There are lots of different ones and it could take

some time to find what works for you.

Be sure you tell your rheumy how much pain you are still having,

plus how severe your side effects are. Sometimes they can't

(because of insurance requirements) move you to a different drug

unless you're very forthright about how it's *not* working. Also,

until one of the heavy duty drugs starts to work, you might be given

NSAIDs and/or narcotic pain relievers to help make life more

bearable.

I don't notice any relation to food in my case. Exercise is good,

preferably aquatic. Pain killers have become my new best friend,

sad to say. The trick is to find the dose that controls the pain

enough that you feel you have a life, without doping you to the

point that you sleep through it. Some days the pain is so great

that I just eat the pain killers and happily sleep it off. Some

days, though, are good.

Hang in there, and stick with us. You'll learn a lot and you'll

have a place to go each day where *everyone* understands what you're

feeling.

sherry z

>

> Hi, I am only 29 and being diagnosed with PA is very scary and

> daubting and being in pain for at least two years i now have some

> relief that the pain has a name. But I am currently on mtx 25mg

but

> going up to 30mg on wed and it is doing othign for me but scaring

the

> hell out of me of what it does to you body especially when it

isn't

> helping. But trying to get my family to understand my condition is

> very hard they just think i am a hypocondriact, huh if only. I

have

> seen 4 different Rheumotologist in the past 5 moth all have

different

> opinions and the last one had me in tears and didn't care, which

sent

> me into more depressionabout this condition at least i know i can

> voice my felings on a websight that understands!! So if anyone can

> give me any information on this condition woud be great, does

eating

> certaion foods help? Exercise? pain killers? Is there any light at

the

> end of this scary tunnel of not knowing what the future holds for

this

> PA i have??

>

[Guest guest]

Hello and welcome,

Pa effects all of so differently, it is hard to know where to begin. One

thing, if you were to tell us where you live, maybe someone could lead you to a

reputable rheumy. It sounds like you are taking an awful lot of mtx, how

many pills is that? I take 7 a week.

As far as the family is concerned, I tell mine I have rheumatoid arthritis,

because people relate better to something they have heard of before. If they

sound interested, I explain the difference between RA and what I have PA..

Otherwise, I just leave it. If they don't care, they don't care and there's

not much your going to do to change their mind short of being in a

wheelchair. You need the ones that support you, not the others so much. They

are only

depressing. I don't excersize much, but I do a lot of stretching. I also

keep moving, but pace myself. I stay busy, either at the computer, house

chores, reading or researching our family tree. This I haven't done too much of

lately because of all the brick walls my ancestors left for me. I think they

lost themselves to a secret life in the Indian Territory or outlaw country.

lol

Most of us can't live without pain killers. There is light at the end of

the tunnel, it's just that you have to find the right tunnel for you. All of

our future depends on research and the drugs they develop. God Help us!! I

have faith He will.

Janet in Ca

[Guest guest]

So if anyone can give me any information on this condition woud be great, does

eating

certaion foods help? Exercise? pain killers? Is there any light at the end of

this scary tunnel of not knowing what the future holds for this PA i have??

Sorry to hear your in such pain... Unfortunetly our pa and all does not always

stay okay... We become ammune to the medications and sometimes it works and

sometimes not... I have tried several and so far the humira shots 2-times a

month, methotrexate, Vicodin, Soma, and Sulfazilazine, has helped... But that

could change in the future... So far, I am happy with what it helping... I hope

you find a happy medium...

Love and Peace Always

Shaun and Barb

[Guest guest]

Hey! I'm Tricia 35 had PA for 2 yrs. I'm totally with

you on it. My family/friends are the same way. People

act as if they can't see it ....it must not exsist. My

hubby gets mad because I can't do the things I once

could. He woke up today with the kink in his

neck...and told me how now he knows how I feel. I told

him I would be thrilled if my pains were only a

temporary kink in the neck. Im also really grumpy all

the time. My docs are like yours....I had to twist his

arm to up my vicoden to 7.5 mg. I have never had a

history of abusing pain meds...in fact the vicoden 5mg

30 pills lasted me 2 months. He tells me I should feel

the pain so I can go to him..and I have no business

driving with these drugs. He doesn't know my

life...and that I don't get out much b/c Im too darned

tired.

You're right ...it is a depressing dz. I'm still in

denial about it and pray all the time I can go back to

the person I once was. Whats even scarier is being so

young and having it....we have the next 50 or so yrs

too look forward too. Will I be in a wheel chair? Will

I walk? Im scared half to death.

I hear people talking about remission. As for me...I

have never had one. I mean, my joints rarely get

swollen.I have had a few fingers and toes. The only

time it truly happened was my elbow. He had to inject

it and that took care of that. But, I don't think it

will ever be straight like it once was. Also, the

Phantom pains in my ankles ..when I wake up....and the

general fatigue..I feel like I should be 80 yrs old.

I hope you find a Rheumy that cares...I think thats

what you should do. If you can find that then you have

conquered half the battle.

Good luck and God bless,

Tricia

__________________________________________________

[Guest guest]

Cameron,

I live in Australia and tomorrow i am going to a good rhemy

hopefully, i take 3 mtx once a week which are 10mg each, but i want to taken

off them as i don't believe they are working and i am scared what they are

doing to my body as i am planning on starting a family next year. I have

recently been given alot of anti inflammtries which am not keen on taking

but told i need to. Hopefully after tomorrow imight have some clearer

answers!!

michaela

>From: cameronparkmom@...

>Reply-

>

>Subject: Re: [ ] PA advice please!!

>Date: Mon, 7 Aug 2006 16:58:43 EDT

>

>Hello and welcome,

>Pa effects all of so differently, it is hard to know where to begin. One

>thing, if you were to tell us where you live, maybe someone could lead you

>to a

>reputable rheumy. It sounds like you are taking an awful lot of mtx, how

>many pills is that? I take 7 a week.

>As far as the family is concerned, I tell mine I have rheumatoid arthritis,

>because people relate better to something they have heard of before. If

>they

>sound interested, I explain the difference between RA and what I have PA..

>Otherwise, I just leave it. If they don't care, they don't care and

>there's

>not much your going to do to change their mind short of being in a

>wheelchair. You need the ones that support you, not the others so much.

>They are only

>depressing. I don't excersize much, but I do a lot of stretching. I also

>keep moving, but pace myself. I stay busy, either at the computer, house

>chores, reading or researching our family tree. This I haven't done too

>much of

>lately because of all the brick walls my ancestors left for me. I think

>they

>lost themselves to a secret life in the Indian Territory or outlaw

>country.

>lol

>Most of us can't live without pain killers. There is light at the end of

>the tunnel, it's just that you have to find the right tunnel for you. All

>of

>our future depends on research and the drugs they develop. God Help us!!

>I

>have faith He will.

>

>Janet in Ca

>

>

>

[Guest guest]

Hey! I'm Tricia 35 had

Most people don't get it when your sick... My family they accept me and my

partner, but they think the cure is I should walk more and get into shape...

Hellooooo, if I could do that I would not need the pain killers? See they just

don't get it... I have to say my one primary doctor he is a wonderful man... He

listens to our needs, me and my partner go in as a couple, which is really

really kewl... He address's both of us on separate pains and needs... Other then

him, I don't always have a lot of kind words for dr's as they can be slightly

rude...

Love and Peace Always

Shaun and Barb

[Guest guest]

Hey Tricia,

Thank you for you response it is good to know its not just my

partner that doesn't understand. I am alsways grumpy too form being pain and

feel exhausted yesturday i got put on anew drug sufasalisate and hopefully

this may work. Its my mum that doesn't understand more she thinks i should

go of all the drugs but how can you explain to someone that doesn't

understand the pain and tiredness we go through on a daily basis. I wish i

could go back to the fairly active person i was and always eager to do

stuff, its winter here in Australia sp at the moment it is rather worse i

can't wait for summer so i can get some relief.

i also had sterods injected on mu knee may last two visits and that was

amazing how great it was but at the moment my joints re ok depends ho i sit

in a chair or sit onthe floor. I look after kids so me getting onthe floor

is very difficult it must be areal sight watching me get off the floor i

have to get on all fours and then attempted to pull myself up.

thank you respanding you take care

michaela

>From: Tricia <nurseontherunn@...>

>Reply-

>

>Subject: Re: [ ] PA advice please!!

>Date: Mon, 7 Aug 2006 15:34:10 -0700 (PDT)

>

>

>Hey! I'm Tricia 35 had PA for 2 yrs. I'm totally with

>you on it. My family/friends are the same way. People

>act as if they can't see it ....it must not exsist. My

>hubby gets mad because I can't do the things I once

>could. He woke up today with the kink in his

>neck...and told me how now he knows how I feel. I told

>him I would be thrilled if my pains were only a

>temporary kink in the neck. Im also really grumpy all

>the time. My docs are like yours....I had to twist his

>arm to up my vicoden to 7.5 mg. I have never had a

>history of abusing pain meds...in fact the vicoden 5mg

>30 pills lasted me 2 months. He tells me I should feel

>the pain so I can go to him..and I have no business

>driving with these drugs. He doesn't know my

>life...and that I don't get out much b/c Im too darned

>tired.

>You're right ...it is a depressing dz. I'm still in

>denial about it and pray all the time I can go back to

>the person I once was. Whats even scarier is being so

>young and having it....we have the next 50 or so yrs

>too look forward too. Will I be in a wheel chair? Will

>I walk? Im scared half to death.

>I hear people talking about remission. As for me...I

>have never had one. I mean, my joints rarely get

>swollen.I have had a few fingers and toes. The only

>time it truly happened was my elbow. He had to inject

>it and that took care of that. But, I don't think it

>will ever be straight like it once was. Also, the

>Phantom pains in my ankles ..when I wake up....and the

>general fatigue..I feel like I should be 80 yrs old.

>I hope you find a Rheumy that cares...I think thats

>what you should do. If you can find that then you have

>conquered half the battle.

>Good luck and God bless,

>Tricia

>

>__________________________________________________

>

[Guest guest]

this comes up all the time with families, coworkers, etc. I was havinga

conversation with someone at work about the importance of " I know " vs. " I think "

and this seems to be the problem with people who don't understand PA...they form

opinions not based in fact. Perhaps it would make sense to order some of the

brochures on PA from the Psoriasis Foundation or Arthritis Foundation so they

can read for themselves that this is a REAL disease even though its not visible!

Re: [ ] PA advice please!!

Hey! I'm Tricia 35 had

Most people don't get it when your sick... My family they accept me and my

partner, but they think the cure is I should walk more and get into shape...

Hellooooo, if I could do that I would not need the pain killers? See they just

don't get it... I have to say my one primary doctor he is a wonderful man... He

listens to our needs, me and my partner go in as a couple, which is really

really kewl... He address's both of us on separate pains and needs... Other then

him, I don't always have a lot of kind words for dr's as they can be slightly

rude...

Love and Peace Always

Shaun and Barb

[Guest guest]

a,

Let me know if it works-

Gosh, I didn't realize you were all the way in

Australia- It is COLD there right now.

I live in Seattle. Let me tell you it is Rainy/cold,

foggy/cold or cloudy cold 11 months a year.

I pray for Mid July when it will just get warmer- My

bones ache so much in the cold. We have approx. 5-6

weeks of warm weather ( still COLD at night).

I would move only my husbands job is here...and only

here. So, I have no choice. In fact, my first clue I

something was wrong (PA) was when I couldn't ski...I

was always too tired etc.

Australia is cold...so I can imagine how you feel.

Having children and trying to keep up. I hope you can

find a better doc. I told my hubby the other day to

quit asking me how my arthritis is....I will let me

know if I should ever have a good day just to assume

Im hurting.

You have come to the right place...I really hope this

med your taking helps!

__________________________________________________

[Guest guest]

>

>

> Hey! I'm Tricia 35 had PA for 2 yrs. I'm totally with

> you on it. My family/friends are the same way. People

> act as if they can't see it ....it must not exsist. My

> hubby gets mad because I can't do the things I once

> could. He woke up today with the kink in his

> neck...and told me how now he knows how I feel. I told

> him I would be thrilled if my pains were only a

> temporary kink in the neck. Im also really grumpy all

> the time. My docs are like yours....I had to twist his

> arm to up my vicoden to 7.5 mg. I have never had a

> history of abusing pain meds...in fact the vicoden 5mg

> 30 pills lasted me 2 months. He tells me I should feel

> the pain so I can go to him..and I have no business

> driving with these drugs. He doesn't know my

> life...and that I don't get out much b/c Im too darned

> tired.

> You're right ...it is a depressing dz. I'm still in

> denial about it and pray all the time I can go back to

> the person I once was. Whats even scarier is being so

> young and having it....we have the next 50 or so yrs

> too look forward too. Will I be in a wheel chair? Will

> I walk? Im scared half to death.

> I hear people talking about remission. As for me...I

> have never had one. I mean, my joints rarely get

> swollen.I have had a few fingers and toes. The only

> time it truly happened was my elbow. He had to inject

> it and that took care of that. But, I don't think it

> will ever be straight like it once was. Also, the

> Phantom pains in my ankles ..when I wake up....and the

> general fatigue..I feel like I should be 80 yrs old.

> I hope you find a Rheumy that cares...I think thats

> what you should do. If you can find that then you have

> conquered half the battle.

> Good luck and God bless,

> Tricia

>

> __________________________________________________

>

[Guest guest]

>

> Hi, I am only 29 and being diagnosed with PA is very scary and

> daubting and being in pain for at least two years i now have some

> relief that the pain has a name. But I am currently on mtx 25mg

but

> going up to 30mg on wed and it is doing othign for me but scaring

the

> hell out of me of what it does to you body especially when it

isn't

> helping. But trying to get my family to understand my condition is

> very hard they just think i am a hypocondriact, huh if only. I

have

> seen 4 different Rheumotologist in the past 5 moth all have

different

> opinions and the last one had me in tears and didn't care, which

sent

> me into more depressionabout this condition at least i know i can

> voice my felings on a websight that understands!! So if anyone can

> give me any information on this condition woud be great, does

eating

> certaion foods help? Exercise? pain killers? Is there any light at

the

> end of this scary tunnel of not knowing what the future holds for

this

> PA i have??

>I know just how you feel ,everybody was so used to me being so

independant ,when everything changed they didnt believe me.They were

more in denial than me ,I printed out pictures of several cases of

pshoriatic arthritis and histories of meds etc. and gave it to the

people who cared enough, to know what I was, or would be, or could

be dealing with.It helped them to understand.To see and read it all

up front.when you describe it to them a little at a time they forget.

Like this one friend that I met later and gave her tid bits of info.

one day she said I didnt know your arthritis had anything to do with

your skin,well duh I bet I had told her what it was a least 20 times.

Just do what you can and give the rest to God.Keeping myself busy

mentally helps when I cant keep busy physically, then when I cant

think or I am just too tired I just sleep it off.Enjoy what ever you

can do.

[Guest guest]

exhausted yesturday i got put on anew drug sufasalisate and hopefully

It's the best thing they put me on... My psoraisis on my body cleared up, and I

feel much better... Course they have me on humira, methotrexate and a few pain

killers... But I am happy that this has cleared up my problems some... I hope

you feel the same once it gets going...

Love and Peace Always

Shaun and Barb

[Guest guest]

this comes up all the time with families, coworkers, etc. I was having

I really don't think it would matter... My mom tries to see it my way, she

suffers from a colapsed lung, and a bad heart from emphaziema and she knows what

it is like not to be able to be as healthy as we once were... They had my on

oxygen a few months back, and it was awful... I had to pack the portables,

breath it all day, sore nose, and tired... Barb tries to help and bring up the

rear with my oxygen and what not... But they removed me off it and I only use at

nights... The rest of the family, well, they all have the ANSWERS... And no

amount of talking about it helps, they just argue they know it all... So I just

don't talk about much of it with my sister or dad... My brother was on

disability... But he is off due to some troubles he has in his life... They

pretty much took him off his drugs and stuff, and he says he is okay, and

training for a new job, but I think he is still looking into going back on it

SSD that is... He has gout, and hep c, he is always in pain ect... So I don't

know... He is trying to get normal, but I don't think he will be able to...

Love and Peace Always

Shaun and Barb