Re: Flare-ups and assistive devices

[Guest guest]

>

> Hi all,

>

> My P is on more of my body than it ever has been. I'm

wondering....does anyone here find that their P is worse on the skin

overlying or surrounding the joints that hurt them the most??

Yes, absolutely! Usually the pain in that joint or tendon preceeds

the breakout or increase of the P in that are.

I also have started to see P creep up my leg - the shins and also

the backs of my thighs. Today also a little starting on the front

of the thigh above the knees. Doesn't surprise me since my knees

pain has been awakening me at night this week.

I have had constant pain from either the arthritis, tendonitis, or

peeling/split skin for almost 2 months now. Isn't this supposed to

be a flare/remit disease? When do I get my relief????

When I see the rheumy again next Friday, I'm going to ask for

something stronger than the NSAIDS she's had me on for 2 months.

Obviously, they are not working!!!! When you open your eyes at 5:50

a.m. and immediately begin to cry - something needs to be done,

right? Or am I just a wimp?

sherry z

[Guest guest]

I think a scooter is a great idea... You need only contact your doctor and the

scooter store and they will make it so... I wanted to also do that as I have

trouble with standing, and walking in stores but my doctor said to wait, I need

to be moving on it for now... My back is a problem as it has arthritis all threw

it now... Anyway, yes, I would definitely look into that...

Love and Peace Always

Shaun and Barb

[Guest guest]

Sherry....I don't think anyone who withstands this disease is a wimp. No way.

Thanks for sharing your experience. It makes me feel a tad bit less alone.

Jayson

[ ] Re: Flare-ups and assistive devices

>

> Hi all,

>

> My P is on more of my body than it ever has been. I'm

wondering....does anyone here find that their P is worse on the skin

overlying or surrounding the joints that hurt them the most??

Yes, absolutely! Usually the pain in that joint or tendon preceeds

the breakout or increase of the P in that are.

I also have started to see P creep up my leg - the shins and also

the backs of my thighs. Today also a little starting on the front

of the thigh above the knees. Doesn't surprise me since my knees

pain has been awakening me at night this week.

I have had constant pain from either the arthritis, tendonitis, or

peeling/split skin for almost 2 months now. Isn't this supposed to

be a flare/remit disease? When do I get my relief????

When I see the rheumy again next Friday, I'm going to ask for

something stronger than the NSAIDS she's had me on for 2 months.

Obviously, they are not working!!!! When you open your eyes at 5:50

a.m. and immediately begin to cry - something needs to be done,

right? Or am I just a wimp?

sherry z

[Guest guest]

Thanks Shaun...I let you guys all know how it turns out.

Jayson

Re: [ ] Flare-ups and assistive devices

I think a scooter is a great idea... You need only contact your doctor and the

scooter store and they will make it so... I wanted to also do that as I have

trouble with standing, and walking in stores but my doctor said to wait, I need

to be moving on it for now... My back is a problem as it has arthritis all threw

it now... Anyway, yes, I would definitely look into that...

Love and Peace Always

Shaun and Barb

[Guest guest]

KEWL...

Love and Peace Always

Shaun and Barb

[Guest guest]

When you open your eyes at 5:50 a.m. and immediately begin to cry - something

needs to be done, right? Or am I just a wimp?

Well now that means you got to sleep? HEHE... Okay its not funny I know, but I

am lucky if I can get a full nights sleep if I don't take trazadone's lol... I

am insomniac... And NO your not a WIMP... Its hard to have this disease and its

also very painful... That is why I JOINED here, I hurt a lot of the time and I

know most here do... It's a place we can all disguss our troubles, pains, aches

or grumbles... Until I take my pain killers, I feel just like you... Welcome...

Love and Peace Always

Shaun and Barb

[Guest guest]

Yes, sleeping is a problem. On a bad night, the pain wakes me up

every 15-30 minutes. On a good night, every 2-3 hours. I usually

sleep like a dead person, so this is very unusual for me. I still

sleep, but every time I move the pain awakens me. I am fidgety, so

this is often.

Is it OK to take a painkiller (Ultram for example) along with NSAIDS?

I have been afraid to take it but have been very tempted.

thanks,

sherry z

[Editor's Note: The answer is generally " yes " but you MUST talk to your

rheumatologist before taking any other medication. Kathy F.]

>

Until I take my pain killers, I feel just like you... Welcome...

>

> Love and Peace Always

> Shaun and Barb

>

>

[Guest guest]

Kathy, thanks. That's why I haven't taken the Ultram yet - was

waiting to consult with rheumy. I wish I had called her sooner,

though. I saw her this a.m. and she added MTX to my drug mix, plus

said yes to the Ultram.

She said to keep taking the Naproxen and Bufferin, add the MTX

weekly, folic acid daily, and Ultram as needed. I've had that

Ultram all along but didn't want to mix with NSAIDs without Dr.'s

permission.

I'm learning not to be shy about calling her. She was very frank

about the fact that the insurance company won't go for the stronger

stuff unless we first show the cheaper stuff doesn't work. She said

not to pretend I'm OK if I'm not, to call often if necessary - but

warned that the MTX takes several months before knowing for sure if

it will do the trick.

sherry z

[Editor's Note: Sherry, thanks for the update. I'm so glad she approved the

Ultram and has added MTX to the equation. She's right - a number of insurance

companies require you to try and fail the cheap stuff first (and that also helps

to keep insurance premiums down). It took about 8 weeks before I noticed an

improvement when I first went on MTX and boy did I feel great after it kicked

in. I didn't realize how bad I felt before I started taking it. Once on it,

you'll need to have your blood drawn frequently in order to monitor your liver

but MTX has been around for a long time and it doesn't cause liver damage in

most people. Good luck with it and please keep us posted on your progress.

Kathy F.]

>

> [Editor's Note: The answer is generally " yes " but you MUST talk

to your rheumatologist before taking any other medication. Kathy F.]

>

[Guest guest]

Jayson...perhaps you should ask them if they thing the thing in

your leg could be a digestive problem....funny...but not really. But

it is maddening that they can't come to an agreement. I'm sorry you

have to be in the middle of it...suffering. Thank you for sharing

with us. I hope it felt better than you expected it too. It often

does. -Betz

>

> Hi all,

>

> I'm here, but I don't post questions about P and PA very often.

I'm not sure why. I think I try to live in denial. Nonetheless,

things have been slowly going downhill for me ever since my MS dx

and the subsequent stopping of my Enbrel. My P is on more of my

body than it ever has been. I'm wondering....does anyone here find

that their P is worse on the skin overlying or surrounding the

joints that hurt them the most?? This seems to be my pattern. I've

always found it curious. Some of you know that I have a right lower

leg problem, about 4 inches above my ankle...that was diagnosed as

stenosing tenosynovitis (read: the tendon sheath has narrowed and

is scarred) a few years ago. My new orthopedic doc says there's no

way that's what it is and thinks it's neurological. My neurologist,

says no way is it neurological, and she thinks it's orthpedic.

Impasse. So I'm going to go to my rheumy on the 31st and see what

they say. Originally they thought it might be from PA and hoped

that Enbrel would fix it. Enbrel fixed everything for me EXCEPT

that leg...but still I find it suspicious that my most severe

patches of P are all up and down the outer part of that lower leg

and on to my foot.....they have to be connected. I can just feel

it. The only thing that ALL of my docs are in agreement about is

that this just may be permanent. After 10-1/2 years I'm starting to

see they are probably right. Darn it anyhow.

>

> Another question: Does anyone here use an assistive device? I

use forearm crutches because of my leg, but now I have PA pretty

badly in my SI joints, so my back hurts when I use my crutches. My

life activities have been severely limited by this leg problem for

10 years now. I simply cannot go with friends/family when they want

to go long distances...or even what a " normal " person would consider

short. So I'm thinking about asking for a script for a scooter.

Anyone use one of these? Any tips?

>

> Thanks,

> Jayson

>

> (Editor's Note: I use a cane about half the time and I use a

scooter occasionally. Both have helped my life easier. It took me

a while to accept that I actually could benefit from these things.

Instead of making me feel " ashamed " , they have given me the power to

do more things and to spend more time with people I want to be

with. So now I feel " assisted " rather than " ashamed " and I am very

grateful for these tools. Kathy F.]

>

[Guest guest]

In a message dated 19/07/2006 13:47:07 GMT Daylight Time, jbarsic@...

writes:

My P is on more of my body than it ever has been. I'm wondering...My P is on

more of my body than it ever has been. I'm wondering...<WBR>.does anyone here

find that their P is worse on

Hi Jayson,

I cant really say that is the case with me. I always have P on my elbows and

knees which only give me occasional problems pain wise. I have nothing too

close to the bad areas, feet, wrists, lower back, neck. Sorry I couldn't help.

I hope someone can.

Take care,