Re: Confirmation Use of joints provokes them

[Guest guest]

Hi Mathurines and welcome to the group.

All I can say is that I personally try to use my joints as much as possible

without overdoing it.

Not using them at all could have just as bad an effect as overuse.

When you are going through a flare, the affected joints do feel as if they

will never be the same again but once you get through that it does ease off and

you can use them normally (hopefully) again. With most of us the

deterioration in joints has gone quite slowly although there are some where it

has

ripped through pretty rapidly.

Your best bet might be to get them to start you on Enbrel right enough as

this seems to be working wonders with a lot of the people on it or the other

biologics. Hopefully that will stop or at least delay any further joint damage.

As I said, this is just my personal opinion Mathurines. Others might say

differently but you should get plenty of advice over the next few months from

this group as they know what you are going through.

Good luck,

[Guest guest]

Hi Mathurines...

Welcome to the group...

Wow, it is wonderful that you were able to clearly observe how the disease works

within your body.

I'm 41 and have had PA for 18 years ~ although most of that time, bordered by

two major flares, I was in remission more-or-less. The past three years I've

suffered from the aches and pains and psorisis, but not the major inflamation,

until this past spring, so I know of the different levels of swelling and pain,

etc...

I have to admit, for me, I don't see the same correlation you do. I have some

joints (my right knee and ankle and ~ plus the tendon's on the top of my right

foot ~ that are my major trouble areas, but I also often have pain and swelling

in my left hip, my fingers, my toes and my back and shoulders ~ but these seem

to come and go and I find no correlation between using them or not.

I also find that doing yoga ~ helps me feel stronger and better ~ that

increasing the muscle around the joints puts less pressure on my joints (I am

very flexible, apparently too flexible as my joints are very loose and

hyper-extend). The only time I am unable to do even this is in a major flare ~

where movement due to swelling was simply impossible (not to mention the

pain)...

Sorry to not be of help ~ perhaps others though share your same observations.

Best Wishes,

(idaho)

[Guest guest]

In a message dated 10/28/2004 6:39:04 AM Eastern Standard Time,

mathurines@... writes:

Use of joints provokes them

Hi Mathurines, my experience is the total opposite...by not moving joints in

pain, I think they get stiffer and harder to use. I spent many months in

physical therapy learning that movement is important because it helps lubricate

the joints and maintain the muscle strength that relieves pressure on the

joints. If you are concerned about movement causing joint stress, many

rheumatologists and physical therapists recommend movement in heated water,

and

many local chapters of the US arthritis foundation offer special water

arthritis

exercise classes.

I know everyone is different, but you might want to talk to a physical

therapist in addition to your rheumatologist, or ask your rheumy if you may

benefit from PT.

[Guest guest]

-Hi Mathurines,

Having just overdone it this week I can confirm that overdoing it

with an active pa joint can definietly make it hurt and swell more.

One rheum, whom I respect, advises water therapy to keep the joints

mobile. I find I need a balance of rest and excercise and that that

elusive balance may change daily.

Active pa and swelling is one of my " issues " as I sustained much

permanent damage to my hands while the rheums were telling me I had

no active pa because they didn't see any obvious swelling.

The hands did hurt quite badly.

welcome to our group.

Marti

- In , " mathurines@y... "

<mathurines@y...> wrote:

>

> Hi, my profile name is mathurines, and I live in Montreal, Canada.

I,

> of course, have Psoriatic arthritis (PsA), and have had it for

> approximately 14 years, and have just become aware of the existence

> of this support group.

>

> Use of joints provokes them

> I need information about how this disease works in other people

> because I have just been released from the hospital because the

> rheumatologist does not seem to believe that the way that my

> arthritis works is that when I use my joints this provokes them. I

> cannot use my knees anymore, and this is very recent and I fear

this

> may be permanent and my experience from the begining of my disease

is

> that I must stop using an active joint completely until it quiets

> down. Once it does return to being quiet I can use it normally. So

> what I am trying to do is save my knees and therefore my ability to

> move about.

>

> Need evidentiary support

> If I had other patients supporting my view then I might be able to

> convince my rheumatologist. I will be trying to get etanercept

> (embrel) on my next visit on Tuesday November 2, 2004. If any of

you

> whose disease works the same way would respond I would be very

> grateful if they replied. I would be glad to hear from those whose

> disease does not work this way so that I may know how it works in

> different people.

>

> This is how I would describe how my arthritis works

> There is what I would call a disease level (DL) of my immune system.

> There is what I would call a suppression level from the medications

(SL).

> The difference DL minus SL I call effective disease level (EDL).

>

> The higher the EDL the less I can use my joints without provoking

them.

>

> If I use a quiet joint beyond the maximum I should use it this will

> provoke what I refer to as joint disease activity (JDA) in that

> joint. I use this expression because as you may know a joint may be

> active with no swelling in PsA. The expression is taken from Dr

Dafna

> Gladman, probably the leading authority in the world on psoriatic

> arthritis. This could also be called inflammation of the joint

using

> inflammation in the larger sense taken from the MeSH (Medical

Subject

> Heading) definition available at the Medline internet site.

>

> If I continue to use an activated joint it becomes even worse. It

> becomes more active.

>

> If the joint is not swollen it becomes more likely to swell. You

can

> feel it in the joint, the sensations from the joint tell you how

> activated it is. If it is swollen then it swells even more. The

> swelling often leads to deformity. The more active the more it will

> result in pain, the greater activity the more painful. The more

> active the more likely there will be damage to the cartilage and

> bone, or so I believe it must be.

>

> When a given joint becomes active (i.e. has JDA) it becomes

> hypersensitive to any use and my experience is that the only way to

> return it to normal is to stop using it completely.

>

> I emphasize that I am not talking about excessive, abusive,

repeated

> and prolonged continuous use, the more active the joint the less I

> can use it, and the less I need to further use it to further

provoke

> and worsen it. When really active I have to stop using it

completely.

> Even slight use will worsen it. The more active the slighter the

use

> necessary to worsen it.

>

> Here are a few examples of this.

> 1. I can recall day after day not walking too much in fear that it

> would provoke my toes, which it often did.

> 2. Early on in the disease I recall a friend encouraging me to

> roller-skate with him and when I did I found out that the price I

had

> payed for it was a swollen toe from the rubbing of foot within the

> roller-skate.

> 3. I for example told my rheumatologist that I did not put on the

> dovonex because rubbing the cream inito my skin provoked my fingers

> 4. When I wash my clothes in my bathtub and then wring the water

out

> of it. This provoked my left wrist and I have had a few deformities

> appear in it.

> 5. Earlier this year I had dactylitis of my right index and it

> required that I not use it for approximately a month and a half

> before it calmed down. Then it became possible to use it normally,

> that is to a certain degree.

> 6. Now there has been increased worsening of knees, and use of

knees

> immediately sends sensations first of a tingling, then of as if

many,

> many, many tiny explosions in the knee are occuring, as if they are

> on fire.

>

> Thanks

>

>

[Guest guest]

is exactly right on from my perspective. It may hurt like the dickens but

you have to

use the joint or loose it. If I had seen a physical therapist before my early

joint damage I

would not have so many frozen and deformed joints.

Tom in anchorage

>

>

> In a message dated 10/28/2004 6:39:04 AM Eastern Standard Time,

> mathurines@y... writes:

>

> Use of joints provokes them

>

>

> Hi Mathurines, my experience is the total opposite...by not moving joints in

> pain, I think they get stiffer and harder to use. I spent many months in

> physical therapy learning that movement is important because it helps

lubricate

> the joints and maintain the muscle strength that relieves pressure on the

> joints. If you are concerned about movement causing joint stress, many

> rheumatologists and physical therapists recommend movement in heated water,

and

> many local chapters of the US arthritis foundation offer special water

arthritis

> exercise classes.

>

> I know everyone is different, but you might want to talk to a physical

> therapist in addition to your rheumatologist, or ask your rheumy if you may

> benefit from PT.

>

>

>

>

>

[Guest guest]

---

Hi Mathurines and welcome,

I totally agree with you. When my first joint was involved was when

I broke my right hip back in Feb. 2002; I had to hold this ultrasound

machine on my hip to get it to help with the healing-I held it with

my right index finger-in a matter of days it was stiff and

unmovable. This has been true with all my joints that have been

affected after this first joint.

God Bless, Sue in Michigan.

In , " mathurines@y... "

<mathurines@y...> wrote:

>

> Hi, my profile name is mathurines, and I live in Montreal, Canada.

I,

> of course, have Psoriatic arthritis (PsA), and have had it for

> approximately 14 years, and have just become aware of the existence

> of this support group.

>

> Use of joints provokes them

> I need information about how this disease works in other people

> because I have just been released from the hospital because the

> rheumatologist does not seem to believe that the way that my

> arthritis works is that when I use my joints this provokes them. I

> cannot use my knees anymore, and this is very recent and I fear

this

> may be permanent and my experience from the begining of my disease

is

> that I must stop using an active joint completely until it quiets

> down. Once it does return to being quiet I can use it normally. So

> what I am trying to do is save my knees and therefore my ability to

> move about.

>

> Need evidentiary support

> If I had other patients supporting my view then I might be able to

> convince my rheumatologist. I will be trying to get etanercept

> (embrel) on my next visit on Tuesday November 2, 2004. If any of

you

> whose disease works the same way would respond I would be very

> grateful if they replied. I would be glad to hear from those whose

> disease does not work this way so that I may know how it works in

> different people.

>

> This is how I would describe how my arthritis works

> There is what I would call a disease level (DL) of my immune system.

> There is what I would call a suppression level from the medications

(SL).

> The difference DL minus SL I call effective disease level (EDL).

>

> The higher the EDL the less I can use my joints without provoking

them.

>

> If I use a quiet joint beyond the maximum I should use it this will

> provoke what I refer to as joint disease activity (JDA) in that

> joint. I use this expression because as you may know a joint may be

> active with no swelling in PsA. The expression is taken from Dr

Dafna

> Gladman, probably the leading authority in the world on psoriatic

> arthritis. This could also be called inflammation of the joint

using

> inflammation in the larger sense taken from the MeSH (Medical

Subject

> Heading) definition available at the Medline internet site.

>

> If I continue to use an activated joint it becomes even worse. It

> becomes more active.

>

> If the joint is not swollen it becomes more likely to swell. You

can

> feel it in the joint, the sensations from the joint tell you how

> activated it is. If it is swollen then it swells even more. The

> swelling often leads to deformity. The more active the more it will

> result in pain, the greater activity the more painful. The more

> active the more likely there will be damage to the cartilage and

> bone, or so I believe it must be.

>

> When a given joint becomes active (i.e. has JDA) it becomes

> hypersensitive to any use and my experience is that the only way to

> return it to normal is to stop using it completely.

>

> I emphasize that I am not talking about excessive, abusive,

repeated

> and prolonged continuous use, the more active the joint the less I

> can use it, and the less I need to further use it to further

provoke

> and worsen it. When really active I have to stop using it

completely.

> Even slight use will worsen it. The more active the slighter the

use

> necessary to worsen it.

>

> Here are a few examples of this.

> 1. I can recall day after day not walking too much in fear that it

> would provoke my toes, which it often did.

> 2. Early on in the disease I recall a friend encouraging me to

> roller-skate with him and when I did I found out that the price I

had

> payed for it was a swollen toe from the rubbing of foot within the

> roller-skate.

> 3. I for example told my rheumatologist that I did not put on the

> dovonex because rubbing the cream inito my skin provoked my fingers

> 4. When I wash my clothes in my bathtub and then wring the water

out

> of it. This provoked my left wrist and I have had a few deformities

> appear in it.

> 5. Earlier this year I had dactylitis of my right index and it

> required that I not use it for approximately a month and a half

> before it calmed down. Then it became possible to use it normally,

> that is to a certain degree.

> 6. Now there has been increased worsening of knees, and use of

knees

> immediately sends sensations first of a tingling, then of as if

many,

> many, many tiny explosions in the knee are occuring, as if they are

> on fire.

>

> Thanks

>

>

[Guest guest]

In a message dated 10/28/2004 1:08:23 PM Eastern Standard Time,

kjreed0929@... writes:

Best Wishes,

(idaho)

I used to live in Boise, Idaho for about two years and worked with a .

Did you ever live there. That would be some coincidence.

Janet

[Guest guest]

I don't know...I am on Enbrel now and things are much better than

they were, but for instance, last week my mother was visiting, and

we went for walks, toured museums and did a lot of antique

shopping...my feet and hips were talking to me more and more each

day. I remembered that the reason I usually feel like I'm in

remission is because I have become very sedentary since acquiring

this disease. (I am 46, came up with this when I was 41-42 or so.)

After I got the disease on the advice of my doctor, I took up

swimming. Seemed like a good idea, but I kept getting disabling

flares in my shoulders. Since I stopped swimming, no more flares

there.

Kathy

[Guest guest]

Hi Janet...

No, I'm sorry to say not... I've lived for the past 17 years in Sandpoint (up

North) and have only been down the Boise a couple of times (it's about at 10 or

12 hour drive through the mountains)... Before that, I was born and raised in

the Chicagoland area.

[Guest guest]

Welcome to the group ! After starting Enbrel I was feeling " cured "

and started exercising again. I can and do work out pretty

regularly but have realized over the past few weeks that I have to

take it slow. I don't really have increased stiffness...just

incredible fatigue and some hints of the old achy foot. As soon as

I started feeling it I got afraid and have since been taking it

easier. My muscles don't seem to rebound from a good workout as

quickly as they used to (pre PA). I'm guessing it's similar to the

way papercuts, etc. don't heal as quickly. Since starting the

Enbrel I've gained 8 lbs...I'm worried about when it's going to

stop...this makes me want to go to the gym more. It's all a big

balancing act. In theory, I think it's better to exercise then not

(strengthening your muscles helps protect your joints). However, I

think what's most important is that you listen to your body. I have

a trainer friend and his motto is " if it hurts......don't do it " .

The objective is to feel good...as far as working out to look

good..I've had to say screw it. Who cares how you look if you feel

like garbage.

It sounds like you are incredibly tuned in to your body and your

disease so I'm sure you'll find the right balance for youself.

Good Luck !

>

> Hi, my profile name is mathurines, and I live in Montreal, Canada.

I,

> of course, have Psoriatic arthritis (PsA), and have had it for

> approximately 14 years, and have just become aware of the

existence

> of this support group.

>

> Use of joints provokes them

> I need information about how this disease works in other people

> because I have just been released from the hospital because the

> rheumatologist does not seem to believe that the way that my

> arthritis works is that when I use my joints this provokes them. I

> cannot use my knees anymore, and this is very recent and I fear

this

> may be permanent and my experience from the begining of my disease

is

> that I must stop using an active joint completely until it quiets

> down. Once it does return to being quiet I can use it normally. So

> what I am trying to do is save my knees and therefore my ability

to

> move about.

>

> Need evidentiary support

> If I had other patients supporting my view then I might be able to

> convince my rheumatologist. I will be trying to get etanercept

> (embrel) on my next visit on Tuesday November 2, 2004. If any of

you

> whose disease works the same way would respond I would be very

> grateful if they replied. I would be glad to hear from those whose

> disease does not work this way so that I may know how it works in

> different people.

>

> This is how I would describe how my arthritis works

> There is what I would call a disease level (DL) of my immune

system.

> There is what I would call a suppression level from the

medications (SL).

> The difference DL minus SL I call effective disease level (EDL).

>

> The higher the EDL the less I can use my joints without provoking

them.

>

> If I use a quiet joint beyond the maximum I should use it this

will

> provoke what I refer to as joint disease activity (JDA) in that

> joint. I use this expression because as you may know a joint may

be

> active with no swelling in PsA. The expression is taken from Dr

Dafna

> Gladman, probably the leading authority in the world on psoriatic

> arthritis. This could also be called inflammation of the joint

using

> inflammation in the larger sense taken from the MeSH (Medical

Subject

> Heading) definition available at the Medline internet site.

>

> If I continue to use an activated joint it becomes even worse. It

> becomes more active.

>

> If the joint is not swollen it becomes more likely to swell. You

can

> feel it in the joint, the sensations from the joint tell you how

> activated it is. If it is swollen then it swells even more. The

> swelling often leads to deformity. The more active the more it

will

> result in pain, the greater activity the more painful. The more

> active the more likely there will be damage to the cartilage and

> bone, or so I believe it must be.

>

> When a given joint becomes active (i.e. has JDA) it becomes

> hypersensitive to any use and my experience is that the only way

to

> return it to normal is to stop using it completely.

>

> I emphasize that I am not talking about excessive, abusive,

repeated

> and prolonged continuous use, the more active the joint the less I

> can use it, and the less I need to further use it to further

provoke

> and worsen it. When really active I have to stop using it

completely.

> Even slight use will worsen it. The more active the slighter the

use

> necessary to worsen it.

>

> Here are a few examples of this.

> 1. I can recall day after day not walking too much in fear that it

> would provoke my toes, which it often did.

> 2. Early on in the disease I recall a friend encouraging me to

> roller-skate with him and when I did I found out that the price I

had

> payed for it was a swollen toe from the rubbing of foot within the

> roller-skate.

> 3. I for example told my rheumatologist that I did not put on the

> dovonex because rubbing the cream inito my skin provoked my fingers

> 4. When I wash my clothes in my bathtub and then wring the water

out

> of it. This provoked my left wrist and I have had a few

deformities

> appear in it.

> 5. Earlier this year I had dactylitis of my right index and it

> required that I not use it for approximately a month and a half

> before it calmed down. Then it became possible to use it normally,

> that is to a certain degree.

> 6. Now there has been increased worsening of knees, and use of

knees

> immediately sends sensations first of a tingling, then of as if

many,

> many, many tiny explosions in the knee are occuring, as if they

are

> on fire.

>

> Thanks

>

>