Activity when joint flare

[Guest guest]

I am new to this board so I'm still feeling my way around. I've had

just hand and wrist pain and have been (not-so) patiently waiting

while the Plaquenil kicks in. During the night I woke up with severe

pain in my left knee and found it hard to get out of bed and even

harder to get off the toilet this AM! I called in sick to work but

have been feeling guilty since then. Should I have bitten the bullet

and gone into work? Am I harmig my joints if I push myself? I don't

want to cause any further damage but it's obvious that if I am going

to have to live with this disease, I'm going to be experiencing aa

certain amount of pain and I can't totally stop my life because of

it. It's so hard to find answers to the little questions like this.

I have a call into my doctor but he's part of a large HMO and I'm

sure he's bombarded by messages throughout the day. I think it's

time I made contact with my local arthritis organization!

Thanks to all and have a pain free day!

Charlotte

[Guest guest]

personally i pushed as long as i could. but it wasn't enough as i am only 42

and disabled. that is how i felt too. guilty. like i told my atty today. i

liked my job. i stood by my company. i got sick, now i want them to stand by

me. call you dr and leave 50 messages if that is what it takes. you've got to

take care of you. no one else will. kathy in il

[Guest guest]

Hi Charlotte - Welcome! I'm sorry you're having a bad day. I understand

how difficult it is to decide when to just push through and when to rest and

give yourself a little time off. I've been struggling with the same issue

since I was diagnosed 2 months ago.

However, you are having a new, severe pain. I think its OK to give yourself

some time to figure out how to work around that or make it better. Its

probably a good idea to call your rheumatologist, even if he is with an HMO.

In the meantime, rest - and try not to feel guilty about it.

I've always been told to be careful about activity during a flare - that it

is really easy to do something that could increase the inflammation and make

the flare worse. On the other hand, sometimes gentle stretching exercises

can make you feel better. However, that is something you should discuss

with your rheumatologist or physical therapist. Also, if you are not taking

an NSAID/ 2 inhibitor, you may want to try Motrin - about 800 mg every 6

hours can be very helpful during a flare.

Take care - in Virginia

>From: " charsteer " <charsteer@...>

>Reply-

>

>Subject: [ ] Activity when joint flare

>Date: Mon, 10 Jun 2002 16:09:07 -0000

>

>I am new to this board so I'm still feeling my way around. I've had

>just hand and wrist pain and have been (not-so) patiently waiting

>while the Plaquenil kicks in. During the night I woke up with severe

>pain in my left knee and found it hard to get out of bed and even

>harder to get off the toilet this AM! I called in sick to work but

>have been feeling guilty since then. Should I have bitten the bullet

>and gone into work? Am I harmig my joints if I push myself? I don't

>want to cause any further damage but it's obvious that if I am going

>to have to live with this disease, I'm going to be experiencing aa

>certain amount of pain and I can't totally stop my life because of

>it. It's so hard to find answers to the little questions like this.

>I have a call into my doctor but he's part of a large HMO and I'm

>sure he's bombarded by messages throughout the day. I think it's

>time I made contact with my local arthritis organization!

>Thanks to all and have a pain free day!

>Charlotte

>

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[Guest guest]

Hi Charlotte,

Welcome. Could you give a few more details? It's hard to get a handle on

your situation without knowing more.

How old are you, when and with what were you diagnosed? What have you been

prescribed, what results and for how long?

What kind of doctor are you treating with?

Looking forward to hearing from your,

Suzanne

[ ] Activity when joint flare

> I am new to this board so I'm still feeling my way around. I've had

> just hand and wrist pain and have been (not-so) patiently waiting

> while the Plaquenil kicks in. During the night I woke up with severe

> pain in my left knee and found it hard to get out of bed and even

> harder to get off the toilet this AM! I called in sick to work but

> have been feeling guilty since then. Should I have bitten the bullet

> and gone into work? Am I harmig my joints if I push myself? I don't

> want to cause any further damage but it's obvious that if I am going

> to have to live with this disease, I'm going to be experiencing aa

> certain amount of pain and I can't totally stop my life because of

> it. It's so hard to find answers to the little questions like this.

> I have a call into my doctor but he's part of a large HMO and I'm

> sure he's bombarded by messages throughout the day. I think it's

> time I made contact with my local arthritis organization!

> Thanks to all and have a pain free day!

> Charlotte

[Guest guest]

Hi Suzanne!

I am a 53 year old nurse practitioner. I began noticing some joint stiffness

in early March. My Mom died the 31st and that following week I developed

flu-like symptoms with joint pain and swelling (primarily the joints at the

base on my hands, wrists, elbows), morning stiffness, low grade temp. I

started taking Motrin 800 mg right away without much effect. I talked to my

internist who ordered a panel of labs which we all normal except for an

elevated C-reactive protein and elevated platelets. I saw a rheumatologist

who put me on a trial of Prednisone and saw me back in two weeks. Since the

Prednisone helped, he started me on Plaquenil May 14th. Just prior to that,

I had a serious flare of my asthma so my internist increased the Prednisone

to 40 mg a day with a tapering dose depending on my asthma symptoms. I ended

up being on Prednisone from May 1st until June 1st. Since I have been off

it, I seem to be having increasing problems with my joints. I overdid things

on Friday and my joint retaliated that afternoon with pain, swelling in my

hands and wrists and pain in my elbows along with a general " fluish " feeling.

None of this was really bothering me a lot until I woke up early Monday

morning with a warm, swollen, painful knee. That really got my attention

since the pain had all been upper body before that. I think I was finally

hit along side the head with the realization that this may be here to stay

and isn't going to go away. I'm usually pretty healthy and never get

anything too serious. I've had some back and joint problems in the past that

were treated with surgery and are OK now. At this point, the diagnosis is

seronegative inflammatory arthritis but he suspects that it is RA and that it

is just too early in the disease process for the RA to be positive and I have

read that it is not such a great disease marker anyway. I do have a pretty

extensive family history of autoimmune disorders, including a grandmother

with RA. I did have aseptic necrosis in my wrist which I am surprised to

find listed in a number of sources as being an autoimmune process. I don't

know....I think everyone's feeling their way along right now and watching to

see what, if anything, will happen next. I'm due to see the rheumatologist

in July and since I work for the same organization, he is pretty accessible

to me although I hesitate to take advantage of that because I don't want to

be a pain in the rear. Although my symptoms are alarming to me, in the

larger scheme of things, they are very minor compared to many people with

long-standing RA. On the other hand, I don't want to get that bad either, if

I can do anything to prevent it. It's strange; I'm am in the medical field

but a neophyte when it come to dealing with something like this affecting ME!

Any help or suggestions you have would be greatly appreciated.

Charlotte

[Guest guest]

Hi Charlotte,

As a nurse practitioner I would imagine joint pain could really present a

problem for you. It's funny how often you hear of someone experiencing a

really stressful event and then some disease process results. I suspect my

mother's death and the resulting probate nightmare I've been involved in for

the last 3 years was a triggering event for me.

Why so long until your next doctor's appointment with your rheumatologist?

Please don't think you are being a pain in the rear asking your doctor for

help! I am so guilty of that very philosophy, and it was very stupid of me

to allow my pcp to dismiss my concerns and complaints. It's really funny

how you can look back and wonder how you managed, when you were in a bad way

and there was no relief. Somehow, I allowed my doctor to make *me* feel

guilty because I was in pain. How's that for twisted?? Please don't do that

to yourself. The earlier you get started, the better the prognosis. When I

first started treatment with my rheumatologist, I was encouraged to stay in

touch, let them know how I was doing and feeling. His goal was to give me

quick relief (with prednisone) and provide long-term relief with a DMARD (in

my case methotrexate). What purpose is it serving for you to be in pain and

miserable until July?

Like you, I'm in my 50's (52), I work full time, in a demanding, fast paced

and stressful office, and I've never had any kind of long lasting physical

problem until I was hit with arthritis. It's scary and unbelievable to be in

the grips of an incurable debilitating disease.

You need to do all the things you can to take care of you and make sure you

will have quality of life into and past retirement.

Do you have access to a pool, a hot tub? Have you tried heating pads and/or

ice packs? All these things can bring great relief depending on your

symptoms.

Good luck,

Suzanne

> Hi Suzanne!

> I am a 53 year old nurse practitioner. I began noticing some joint

stiffness

> in early March. My Mom died the 31st and that following week I developed

> flu-like symptoms with joint pain and swelling (primarily the joints at

the

> base on my hands, wrists, elbows), morning stiffness, low grade temp. I

> started taking Motrin 800 mg right away without much effect. I talked to

my

> internist who ordered a panel of labs which we all normal except for an

> elevated C-reactive protein and elevated platelets. I saw a

rheumatologist

> who put me on a trial of Prednisone and saw me back in two weeks. Since

the

> Prednisone helped, he started me on Plaquenil May 14th. Just prior to

that,

> I had a serious flare of my asthma so my internist increased the

Prednisone

> to 40 mg a day with a tapering dose depending on my asthma symptoms. I

ended

> up being on Prednisone from May 1st until June 1st. Since I have been off

> it, I seem to be having increasing problems with my joints. I overdid

things

> on Friday and my joint retaliated that afternoon with pain, swelling in my

> hands and wrists and pain in my elbows along with a general " fluish "

feeling.

> None of this was really bothering me a lot until I woke up early Monday

> morning with a warm, swollen, painful knee. That really got my attention

> since the pain had all been upper body before that. I think I was finally

> hit along side the head with the realization that this may be here to stay

> and isn't going to go away. I'm usually pretty healthy and never get

> anything too serious. I've had some back and joint problems in the past

that

> were treated with surgery and are OK now. At this point, the diagnosis is

> seronegative inflammatory arthritis but he suspects that it is RA and that

it

> is just too early in the disease process for the RA to be positive and I

have

> read that it is not such a great disease marker anyway. I do have a

pretty

> extensive family history of autoimmune disorders, including a grandmother

> with RA. I did have aseptic necrosis in my wrist which I am surprised to

> find listed in a number of sources as being an autoimmune process. I

don't

> know....I think everyone's feeling their way along right now and watching

to

> see what, if anything, will happen next. I'm due to see the

rheumatologist

> in July and since I work for the same organization, he is pretty

accessible

> to me although I hesitate to take advantage of that because I don't want

to

> be a pain in the rear. Although my symptoms are alarming to me, in the

> larger scheme of things, they are very minor compared to many people with

> long-standing RA. On the other hand, I don't want to get that bad either,

if

> I can do anything to prevent it. It's strange; I'm am in the medical

field

> but a neophyte when it come to dealing with something like this affecting

ME!

> Any help or suggestions you have would be greatly appreciated.

> Charlotte

>

>

>

[Guest guest]

Thanks Suzanne.

My next appointment was scheduled far enough out to see if the

Plaquenil was working. At the time I saw him last, 2 weeks from the date of

the first visit, I was weaning off the Prednisone and doing OK. I keep

thinking the Plaquenil should kick in any time now since I'm four weeks out.

I want to give it a good try before I switch to something else since its side

effect profile is pretty good. I'm doing a little better now. I've found

that if I take 1.5 Gm of Buffered Aspirin every 5-6 hours around the clock my

symptoms are more manageable and I'm not getting the stomach problems I was

getting with Motrin. I've been waking up at 4 a.m. and taking the Aspirin;

makes it much easier to get out of bed at 5:30.

It is very frustrating to suddenly find yourself so challenged at

doing simple things like writing, turning door knobs, and opening containers.

I'm contemplating changing to an " on-call " rather than full-time position

because I think the 14 hour days are not helping my health but I do love what

I do and hate to change if things are going to get better soon. I have

talked to people my age with RA who are in complete remission as long as they

take their DMARD so I'm hoping for the same result. My employer is not very

understanding which is pretty pathetic since it's a healthcare organization

and you'd think they would have a little empathy and understanding of what is

going on.

I'm sorry about your Mom. I have not had to deal with the probate

thing; my dad is still alive and they had a living trust established but

losing my Mom has to be the most traumatic event of my life.

I don't have a hot tub thanks to some mice who decided to eat my

wiring and getting to a pool is pretty well quashed by my long days since I

have a 1 1/2 hour commute each way. I do have some great herbal mittens that

are microwavable and seem to help a lot. I was doing paraffin baths to my

hands during the night when I hurt so badly but now I've found I can zap

these in the microwave for 2 minutes, crawl back in to bed with them on, and

fall back to sleep. They also seem to decrease the pain in the morning when

used at bedtime but I am still experimenting with that. Now if I could just

find some that would cover my entire arms up to the shoulders, I'd be all

set! Some of the books say to use ice packs for the inflammation but that

just sounds painful to me. Have you ever tried it?

Thanks for all of your help. This whole disease is so overwhelming

because you have no idea where you'll be in a year. It gets depressing when

things don't seem to be improving and you start thinking you'll be this way

forever! I do have a lot of confidence in my rheumatologist but I do have to

fight with my own tendency to " be a good patient " and not bother him. And, I

guess, bottom line, I know I need to give the Plaquenil time to work and I

don't want to go back on the Prednisone if at all possible. I have some here

and I know if I called, he'd tell me to take it, but I became such a witch on

it that I don't want to go there. I'm not pleasant when my joints bother me

but I was worse on the Prednisone!

Take care and I hope you have lots of pain free days.

Charlotte

[Guest guest]

In a message dated 6/16/02 10:07:58 AM Central Daylight Time,

charsteer@... writes:

> Some of the books say to use ice packs for the inflammation but that

> just sounds painful to me. Have you ever tried it?

i was told to ice the new and heat the old. if i do something strenuous, like

shopping or laundry and my back hurts i'll ice it. same if i walk or stand

too long and my ankles are swollen i'll try ice. but if it's just stiff sore

or from cold and damp weather i'll use the heat packs. kathy in il

[Guest guest]

In a message dated 6/16/02 10:30:36 AM Central Daylight Time,

suzshay@... writes:

> I understand about the frustration of suddenly not being able to do the

> simplest of things! For a time, I couldn't turn on the shower handles,

> turn

> the key in my car, open jars, milk cartons, turn the door handle, etc. etc.

> etc.!! I can do all these things again; I will never take these things for

> granted again!!

i still remember turning the doorknob, getting that jolt and my middle

knuckle just swelling up. i was moving in 3 weeks. the dr told me i could

not do anything. almost 7 years later i still don't know what is in the back

of my bedroom closet. guess i didn't need it!!! i was told to do no wiping,

washing, dusting, i even cried at times trying to hold the butter knife. the

carpal tunnel surgery helped so much for that. wish it would have worked on

my feet as well. i go for an ultrasound tomorrow on my ankles. kathy in il

[Guest guest]

Hi Charlotte,

I don't have any experience with plaquenil, only methotrexate. However, it

took about 3 months for the methotraxate to kick in. During that time I

stayed on a dose of prednisone that kept me " comfortable " . My doctor weened

me down to the level I felt best at.

It must be very hard to be taking a medication and still feeling lousy!

That's why I was wondering what else you might be taking to make you feel

better while you waited to see if the plaquenil is going to work.

Bottom line for us working women is that we need to work and need to feel

good enough to work! My job is very cerebral, with an element of physical

effort; it was so hard to stay focused and do my job when I felt lousy! Any

kind of narcotic was out of the question when I was at work since I need all

my faculties about me while working.

I well know the routine of tylenol around the clock. If it is keeping you

functional and comfortable, then that's good.

I understand about the frustration of suddenly not being able to do the

simplest of things! For a time, I couldn't turn on the shower handles, turn

the key in my car, open jars, milk cartons, turn the door handle, etc. etc.

etc.!! I can do all these things again; I will never take these things for

granted again!!

My employer and coworkers have been very supportive and understanding about

my new " inabilities " . It's funny, but you are not the first to say their

employer (in the insurance or medical fields) was not supportive or

sympathetic. I can't understand that. However, it seems to be pretty

universal if the folks on this list are anything to go by.

Sounds like you are doing all the right things for relief. Sorry about your

long drive back and forth to work. I was having an increasingly hard time

driving, before I got relief from prednisone and mtx. I can't even imagine

how hard that long a ride would have been for me. I used to get shooting

pains in my legs and arms, my back and bottom would become so painful I

couldn't stand it. My 20 minute ride back and forth to work was becoming a

very unpleasant experience. The 2 1/2 hour trip to see my rheumatologist was

an act of total determination. Now I can drive just fine.

The only time I used cold was when I had hot/swollen joints. When I just had

pain, a heating pad worked well. I also have the mittens you put in the

microwave. There were a godsend when my hands would ache. The pool and hot

tub are still, and have always been, my salvation.

Hope you enjoy what's left of the weekend.

Suzanne

Re: [ ] Activity when joint flare

> Thanks Suzanne.

> My next appointment was scheduled far enough out to see if the

> Plaquenil was working. At the time I saw him last, 2 weeks from the date

of

> the first visit, I was weaning off the Prednisone and doing OK. I keep

> thinking the Plaquenil should kick in any time now since I'm four weeks

out.

> I want to give it a good try before I switch to something else since its

side

> effect profile is pretty good. I'm doing a little better now. I've found

> that if I take 1.5 Gm of Buffered Aspirin every 5-6 hours around the clock

my

> symptoms are more manageable and I'm not getting the stomach problems I

was

> getting with Motrin. I've been waking up at 4 a.m. and taking the

Aspirin;

> makes it much easier to get out of bed at 5:30.

> It is very frustrating to suddenly find yourself so challenged at

> doing simple things like writing, turning door knobs, and opening

containers.

> I'm contemplating changing to an " on-call " rather than full-time position

> because I think the 14 hour days are not helping my health but I do love

what

> I do and hate to change if things are going to get better soon. I have

> talked to people my age with RA who are in complete remission as long as

they

> take their DMARD so I'm hoping for the same result. My employer is not

very

> understanding which is pretty pathetic since it's a healthcare

organization

> and you'd think they would have a little empathy and understanding of what

is

> going on.

> I'm sorry about your Mom. I have not had to deal with the probate

> thing; my dad is still alive and they had a living trust established but

> losing my Mom has to be the most traumatic event of my life.

> I don't have a hot tub thanks to some mice who decided to eat my

> wiring and getting to a pool is pretty well quashed by my long days since

I

> have a 1 1/2 hour commute each way. I do have some great herbal mittens

that

> are microwavable and seem to help a lot. I was doing paraffin baths to my

> hands during the night when I hurt so badly but now I've found I can zap

> these in the microwave for 2 minutes, crawl back in to bed with them on,

and

> fall back to sleep. They also seem to decrease the pain in the morning

when

> used at bedtime but I am still experimenting with that. Now if I could

just

> find some that would cover my entire arms up to the shoulders, I'd be all

> set! Some of the books say to use ice packs for the inflammation but that

> just sounds painful to me. Have you ever tried it?

> Thanks for all of your help. This whole disease is so overwhelming

> because you have no idea where you'll be in a year. It gets depressing

when

> things don't seem to be improving and you start thinking you'll be this

way

> forever! I do have a lot of confidence in my rheumatologist but I do have

to

> fight with my own tendency to " be a good patient " and not bother him.

And, I

> guess, bottom line, I know I need to give the Plaquenil time to work and I

> don't want to go back on the Prednisone if at all possible. I have some

here

> and I know if I called, he'd tell me to take it, but I became such a witch

on

> it that I don't want to go there. I'm not pleasant when my joints bother

me

> but I was worse on the Prednisone!

> Take care and I hope you have lots of pain free days.

> Charlotte

>

>

>

[Guest guest]

Hi - When I started taking the Plaquenil it took

probably 4 to 5 months for me to really feel that it

was working, and I also took 3 to 4 Motrin a day as

well. If the Motrin is hard on your stomach, ask your

doctor about Bextra. I just started taking it in the

place of the Motrin and it's just a little pill

(instead of Motrin's giant one) that you take one to

two times a day - usually one a day does me fine - and

it is not as hard on your stomach as Motrin. I'll

have to try and look for those mittens you talk about

-they sound great, and yes, it would be wonderful if

there was something to cover your entire arm! Where

did you get them?

Kathe in CA

__________________________________________________

[Guest guest]

no i can pretty much do it all. i just don't have the energy anymore.plus i

will pay the price!!! i think most of the stuff back there in the closet was

my husband's anyway. when he died he didn't leave much and my son was only 9,

so i wanted to save it for him. kathy in il

[Guest guest]

Kathi,

Good luck on your ultrasound. Of all the tests I've endured, untrasounds

aren't too bad in the scheme of things.

Are you still restricted from wiping, washing, and dusting? It's probably

like having your water shut off for repairs, you never realize how much

water you use/need until you don't have any/can't get any. The minute you're

told not to do something, that action becomes something you desperately need

to do multiple times an hour!

I've got closets like that, I've overwhelmed thinking about cleaning them

out. I'm trying FLYlady to see if I can get control of my house (LOL). So

far I'm managing to keep my sink clean and shiny, counters clear, laundry

kept up and the downstairs bathroom picked up. Got yards to go I'm afraid!!

Suzanne

Re: [ ] Activity when joint flare

> In a message dated 6/16/02 10:30:36 AM Central Daylight Time,

> suzshay@... writes:

>

>

> > I understand about the frustration of suddenly not being able to do the

> > simplest of things! For a time, I couldn't turn on the shower handles,

> > turn

> > the key in my car, open jars, milk cartons, turn the door handle, etc.

etc.

> > etc.!! I can do all these things again; I will never take these things

for

> > granted again!!

>

> i still remember turning the doorknob, getting that jolt and my middle

> knuckle just swelling up. i was moving in 3 weeks. the dr told me i

could

> not do anything. almost 7 years later i still don't know what is in the

back

> of my bedroom closet. guess i didn't need it!!! i was told to do no

wiping,

> washing, dusting, i even cried at times trying to hold the butter knife.

the

> carpal tunnel surgery helped so much for that. wish it would have worked

on

> my feet as well. i go for an ultrasound tomorrow on my ankles. kathy in il

[Guest guest]

Kathe,

I got the mittens online at a place called spashoppe.com. They come from

Santa Cruz, CA so should get to you soon. Where in CA are you? I'm near

Sacramento.

Charlotte

[Guest guest]

Hi Charlotte:

Thanks for the mitten info. We are down in southern

CA near Lake Elsinore.

Kathe in CA

__________________________________________________