postings

[Guest guest]

Thanks, Kathy,

I did see the one I felt was important, to me. Speaking of my finger tips and

how I was diagnosed with psoriatic. I am interested in what others have to say.

I must say, everyone on this group seems very kind and caring.

Hiker

had2tryharder <had2tryharder@...> wrote:

I've sent a couple of e-mails - one today, and I don't see any

responses. One to group administrator and one to the list.

Checking to see if this comes through.

Hiker

[Editor's Note: It sure did. I just got home from work - 13 hours after I

started. Sorry I couldn't get to the messages sooner. Kathy F.]

[Guest guest]

Hiker,

What kind of problems were /are you having with your fingers? I will share

my story with you and hope it helps.

I had shoulder pain for over a year with 3 injections before my fingers got

involved. I guess the A worked its way down. I was seeing an orthopedist who

mis- diagnosed me. At work in .October, 05 my middle finger began to throb

like someone was using a hammer on it.

It was swollen and very painful. That is when I realized that there was

more going on than with the shoulder ( bursitis), is what I was told first and

then rotator cuff. I started doing research. My fingers were curled up in the

middle of the night and after I rested ( I used tons of ice) I was then told

I had carpel tunnel and started to wear a splint.

continued to research and when my PCP found my sed rate up a month or so

later she referred me to a reumy. In the interim my dermatologist, PCP, and I

diagnosed me with PA basically because the P went haywire after a surgery I

had in December along with the A.

For insurance reasons I have had to wait until now to be able to see one. I

go on Friday. My pain continues to be mostly hand, finger and shoulder

related, but the fingers were the most painful. They were numb sometimes, and

it

felt like there was an electrical current running my hand and fingers at

times.

Needless to say, I no longer see the orthopedists and would like to sue

them. If they had done a few blood tests I might not have suffered so much.

Judy

I must admit that I personally measure success in terms of the contributions

an individual makes to her or his fellow human beings.

Margaret Mead

[Guest guest]

Hi Judy,

the bones in the tips of my fingers, the smallest joint of the fingers - they

are deteriorating and the fingers have no stability. My hands, all fingers,

thubs, hurt more than any part of my body. It was my finger condition that my

rheumy deemed as psoariatic.

I wanted to know, does anyone else, on this list - have that type of finger

joint?

I have other bad joints and the rheumy calls those osteo and rheumatoid - he

keeps me confused.

Judy, I don't understand why you are saying you don't trust an orthopaedic?

Rheumies and orthopaedic do not tend to agree, though -

Thanks for any answers I may receive.

Hiker

judyinkyjc@... wrote:

Hiker,

What kind of problems were /are you having with your fingers? I will share

my story with you and hope it helps.

I had shoulder pain for over a year with 3 injections before my fingers got

involved. I guess the A worked its way down. I was seeing an orthopedist who

mis- diagnosed me. At work in .October, 05 my middle finger began to throb

like someone was using a hammer on it.

It was swollen and very painful. That is when I realized that there was

more going on than with the shoulder ( bursitis), is what I was told first and

then rotator cuff. I started doing research. My fingers were curled up in the

middle of the night and after I rested ( I used tons of ice) I was then told

I had carpel tunnel and started to wear a splint.

continued to research and when my PCP found my sed rate up a month or so

later she referred me to a reumy. In the interim my dermatologist, PCP, and I

diagnosed me with PA basically because the P went haywire after a surgery I

had in December along with the A.

For insurance reasons I have had to wait until now to be able to see one. I

go on Friday. My pain continues to be mostly hand, finger and shoulder

related, but the fingers were the most painful. They were numb sometimes, and

it

felt like there was an electrical current running my hand and fingers at

times.

Needless to say, I no longer see the orthopedists and would like to sue

them. If they had done a few blood tests I might not have suffered so much.

Judy

[Guest guest]

> I wanted to know, does anyone else, on this list -

> have that type of finger joint?

> Hiker

>

Hi Hiker, That's known as the DIP (distal

interphalangeal) joint. I have inflammation in all of

mine except one, and just had one fused in January. I

may be correct in thinking DIP inflammation is common

to PA?

warm blessings

jane

__________________________________________________

[Guest guest]

I guess it's not so much that I don't trust an orthopedic doctor. I know

they have their place. I only wish they would have ran some blood tests for

inflammation. But is might not have shown up then anyway. It sees like I

wasted

over a year running to them for cortisone injections in my shoulder when all

along it was the PA,. I had psoriasis and they knew that. I'm just grateful

that when my hands started bothering me that my PCP checked my sed rater and

found it elevated, thus referring me to R. She is excellent and very thorough.

Maybe I am just looking for someone to blame that my body isn't cooperating

with me. . I'm still having a hard time accepting this illness.

Judy

I must admit that I personally measure success in terms of the contributions

an individual makes to her or his fellow human beings.

Margaret Mead

[Guest guest]

Thank you for that reply.

The DIP was the point in which my rheumy designated psoriatic arthrits - up

until then, no " name " was given to it.

I now have three finger tips with side to side movement; not normal.

I have a rheumy appt. monday and he tells me he has something " better for me,

than Mobic " so, I'm very, very curious about that. The hands are my most

uncomfortable area. I have knees, feet, etc., with OA but the hands really,

really hurt most of all..

I did use parafin baths, but then I had bad inflammation that was worsened by

the heat - so, I've not used the parafin since.

Thanks for this information.

jane karsten <janekarsten@...> wrote:

> I wanted to know, does anyone else, on this list -

> have that type of finger joint?

> Hiker

>

Hi Hiker, That's known as the DIP (distal

interphalangeal) joint. I have inflammation in all of

mine except one, and just had one fused in January. I

may be correct in thinking DIP inflammation is common

to PA?

warm blessings

jane

[Guest guest]

Just a thought - orthopedics and rheumies - seem not to have the same language.

I went to orthopedic about my hands; and then the rheumy and there was a

completely different attitude. The orthopedic was do nothing - the rheumy works

with me. I wanted the orthop. to do some surgery - no, he says, there is

nothing there to work with......

judyinkyjc@... wrote:

I guess it's not so much that I don't trust an orthopedic doctor. I know

they have their place. I only wish they would have ran some blood tests for

inflammation. But is might not have shown up then anyway. It sees like I

wasted

over a year running to them for cortisone injections in my shoulder when all

along it was the PA,. I had psoriasis and they knew that. I'm just grateful

that when my hands started bothering me that my PCP checked my sed rater and

found it elevated, thus referring me to R. She is excellent and very thorough.

Maybe I am just looking for someone to blame that my body isn't cooperating

with me. . I'm still having a hard time accepting this illness.

Judy

[Guest guest]

Hi, Are you talking about loosy goosy joints..know as being double jointed..you

can take my wrists, hold above it with one hand and hold on to my hand with the

other and my wrist joint moves side to side so does my fingers and my

knees..this ironically is where all my pain is..Oh and my ankles and toes will

too..which is a big source of my pain..

Vickey

jane karsten <janekarsten@...> wrote:

> I wanted to know, does anyone else, on this list -

> have that type of finger joint?

> Hiker

>

Hi Hiker, That's known as the DIP (distal

interphalangeal) joint. I have inflammation in all of

mine except one, and just had one fused in January. I

may be correct in thinking DIP inflammation is common

to PA?

warm blessings

jane

__________________________________________________

[Guest guest]

Judy, Dont be too hard on yourself..Accepting this illness is a long process..I

find that what I am facing that day..I pray this one prayer everyday and ask for

strength for whatever comes my way that day..I am not meaning to preach just

wanted you to know how I cope..It seems to help knowing I am not alone..and that

my God is there for me every step of the way!!

Hang in there!! We are here to listen to you so vent all you need to..

Sincerely, Vickey

judyinkyjc@... wrote:

I guess it's not so much that I don't trust an orthopedic doctor. I know

they have their place. I only wish they would have ran some blood tests for

inflammation. But is might not have shown up then anyway. It sees like I

wasted

over a year running to them for cortisone injections in my shoulder when all

along it was the PA,. I had psoriasis and they knew that. I'm just grateful

that when my hands started bothering me that my PCP checked my sed rater and

found it elevated, thus referring me to R. She is excellent and very thorough.

Maybe I am just looking for someone to blame that my body isn't cooperating

with me. . I'm still having a hard time accepting this illness.

Judy

[Guest guest]

Hi Judy,

I remember playing the blame game when I was first diagnosed, too. Only it

was the rheumy I was ticked at. When I called them for an appointment, they

gave me date for the next week. Then after getting my name and finding out

I was a new patient she informed me it would be a 6 month wait. I went

balistic! How can you make me (or anyone else for that matter)wait for 6

months.

She said I would need a longer period with the doctor than she had an

opening. So I fell back on my old motto from when I was on my own with four

kids.

Not babies thank God, but they were all teenagers at one time for about a

year! (13-19 years old)

" God will not give me more than I can handle. " I really thought He had

messed up this time because it felt like Aliens had invaded my body, but with

each flare, I would have one of my kids call or show up to boost me up again.

If it wasn't them, it would be a friend or neighbor come by and just a short

visit can help aleve the pain for a while.

Oh, and one thing about that first rheumy, he was the only one in the small

Oregon town I lived in. I tried Medford and Eugene, which were larger

cities, and discovered the same problem. 6 month waits. It may take you a

little

while for you to get your medicine regulated, but all will be better soon.

Surely God gave this disease that is so hard to diagnose, and so hard to

regulate to only very special people because He knows we will be strong and

overcome each obstacle. Don't you suppose???

Janet

[Guest guest]

Well, yes - loosy goosy could be a description, but double jointed, not as I've

known that to be. My finger tips are mushy, that's my best description, moving

side to side seemingly without any bones in those tips. They're ugly, but no

longer painful. I'm not sayting I have no pain in my hands, though. They are

the most painful part of my body, at this time. Bad knees, bad feet, but oh,

those hands!

Thanks for your input.

Be well, be happy,

Dee

Vickey Arnold <smilin4dannme2002@...> wrote:

Hi, Are you talking about loosy goosy joints..know as being double

jointed..you can take my wrists, hold above it with one hand and hold on to my

hand with the other and my wrist joint moves side to side so does my fingers and

my knees..this ironically is where all my pain is..Oh and my ankles and toes

will too..which is a big source of my pain..

Vickey

[Guest guest]

Hi Dee,

My fingertips alternate between fused and loosey goosey. In half of

them the bone has overgrown. the losey goosey ones actually have lost

almost all or all the bone of the joint. If you look at an xray it

looks like someone took an eraser and just wiped away part of the

picture. they call this telescoping or opera glass effect or mutilans

subset of pa. It sometimes starts with what is called the pencil and

cup syndrome...where the bone is worn to a point at one side of the

joint and worn outward on the other side...like a pencil tip inserted

into a cup.

OK martin...what did we call our boneless joints? empty cup

syndrome lol

hope you can stop the damage , Dee.

best,

marti

> Hi, Are you talking about loosy goosy joints..know as being

double jointed..you can take my wrists, hold above it with one hand

and hold on to my hand with the other and my wrist joint moves side

to side so does my fingers and my knees..this ironically is where all

my pain is..Oh and my ankles and toes will too..which is a big source

of my pain..

>

> Vickey

>

[Guest guest]

Hi Janet,

I thought our system was bad but a six months wait is ridiculous. I

don't know if you have heard but we're having a bit of a problem

with " Bird Flu " in Europe. (Avian Influenza) It seems that this

little rascal can mutate from birds to humans and is life

threatening. We are in fact rearful of a world epidemic of biblical

proportions. But fear not, Mr Blair and Mr Bush have come up with

a solution. Oh yes, we're going to " nuke " the Canary Islands.

How's that for all y'all.

Keep the light shining,

Ian.

>

> Hi Judy,

> I remember playing the blame game when I was first diagnosed,

too. Only it

> was the rheumy I was ticked at. When I called them for an

appointment, they

> gave me date for the next week. Then after getting my name and

finding out

> I was a new patient she informed me it would be a 6 month wait.

I went

> balistic! How can you make me (or anyone else for that matter)

wait for 6 months.

> She said I would need a longer period with the doctor than she

had an

> opening. So I fell back on my old motto from when I was on my

own with four kids.

> Not babies thank God, but they were all teenagers at one time for

about a

> year! (13-19 years old)

> " God will not give me more than I can handle. " I really thought

He had

> messed up this time because it felt like Aliens had invaded my

body, but with

> each flare, I would have one of my kids call or show up to boost

me up again.

> If it wasn't them, it would be a friend or neighbor come by and

just a short

> visit can help aleve the pain for a while.

> Oh, and one thing about that first rheumy, he was the only one in

the small

> Oregon town I lived in. I tried Medford and Eugene, which were

larger

> cities, and discovered the same problem. 6 month waits. It may

take you a little

> while for you to get your medicine regulated, but all will be

better soon.

> Surely God gave this disease that is so hard to diagnose, and so

hard to

> regulate to only very special people because He knows we will be

strong and

> overcome each obstacle. Don't you suppose???

> Janet

>

>

>

[Guest guest]

Thanks ever so much for this information, as I've never heard much about it.

Seeing my rheumy today and here's hoping for something to STOP the

progression. I have been asking for just such a thing for years, but the damage

con tinues.

Be well, be happy,

Dee

snowbound22003 <mlw402@...> wrote:

Hi Dee,

My fingertips alternate between fused and loosey goosey. In half of

them the bone has overgrown. the losey goosey ones actually have lost

almost all or all the bone of the joint. If you look at an xray it

looks like someone took an eraser and just wiped away part of the

picture. they call this telescoping or opera glass effect or mutilans

subset of pa. It sometimes starts with what is called the pencil and

cup syndrome...where the bone is worn to a point at one side of the

joint and worn outward on the other side...like a pencil tip inserted

into a cup.

OK martin...what did we call our boneless joints? empty cup

syndrome lol

hope you can stop the damage , Dee.

best,

marti

[Guest guest]

Hi Vickey~

I used to have those loosy goosey joints you are talking about... from being

double jointed.... I always wondered if I was predispositioned to get this

disease and if those double joints had something to do with it. All I know is

there is no way I could move those joints that way anymore! Those days are long

gone!

Jody

Vickey Arnold <smilin4dannme2002@...> wrote:

Hi, Are you talking about loosy goosy joints..know as being double

jointed..you can take my wrists, hold above it with one hand and hold on to my

hand with the other and my wrist joint moves side to side so does my fingers and

my knees..this ironically is where all my pain is..Oh and my ankles and toes

will too..which is a big source of my pain..

Vickey

[Guest guest]

In a message dated 30/04/2006 12:56:10 GMT Daylight Time,

cameronparkmom@... writes:

Surely God gave this disease that is so hard to diagnose, and so hard to

regulate to only very special people because He knows we will be strong and

overcome each obstacle. Don't you suppose???

Lol For sure Janet!

Actually, I think we are a new species evolving. We will have taken over in a

couple of million years! lol Then we might have to repair the damage done to

the planet by those humans. lol

Take care,

[Guest guest]

Thanks to Jane for the following reply and I'm wondering - what finally happens

to those finger tips as they are seeminly dissolving away any bone - is that

when you do a fusion? Oh, my fingers can hurt - of all my joints it's the hands

that are the worst.

This enbrel has me terribly worried - I've had four injections and my concern

with compromising the immune system makes me think I should just be tolerating

the pain of the joints - how often do you all have to stop the enbrel in order

to fight some infection i.e. sinus or anything else - even a toe infection that

I had, from an ingrown toenail - the doctor told me I shouldn't do the

injection. Well, it was only infected, because of the enbrel, wasn't it?

I'm running an awful lot through my mind these days - I'm just looking for

thoughts from those of you who have used enbrel for some period of time - is

this the " smarter " thing to do?

Don't think of this as a " flare " just questioning this pain relief may be a

little too dangerous.

Thanks for your thoughts and good information I get while reading the posts to

this group.

Be well, be happy,

Dee

jane karsten <janekarsten@...> wrote:

> I wanted to know, does anyone else, on this list -

> have that type of finger joint?

> Hiker

>

Hi Hiker, That's known as the DIP (distal

interphalangeal) joint. I have inflammation in all of

mine except one, and just had one fused in January. I

may be correct in thinking DIP inflammation is common

to PA?

warm blessings

jane

[Guest guest]

In a message dated 01/05/2006 10:36:35 GMT Daylight Time, mlw402@...

writes:

OK martin...what did we call our boneless joints? empty cup

syndrome lol

Lol That's it Marti. Empty cup syndrome or Rubber fingers. I liked the loosey

goosey description though. Isn't there a country and western song about that?

'Don't break my finger, my loosey goosey finger, I just don't think you

understand...............' Well, its something like that anyway! lol

Lol Sorry I took so long to answer but you know me by now! lol

Take care,

[Guest guest]

hi everyone i am having problems recieving emails from the group]

can anyone please advise

john

[Guest guest]

[low dose naltrexone] postings

hi everyone i am having problems recieving emails from the group]can anyone please advisejohn

[Guest guest]

Hi ,

That happens to me once in a while also. At first I thought maybe I said something wrong and someone took me off of the list. Later I mysteriously was back on the list. This cycle seems to have occurred about 4 times over the past 2.5 years on the chat site.

Does anyone have any advise for ?

My best

Aletha

[low dose naltrexone] postings

hi everyone i am having problems recieving emails from the group]can anyone please advisejohn

[Guest guest]

Gidday ,

After signing in go to 'edit membership' (located at the top of the

page).

On this page you'll find a section titled 'Step 2. Message Delivery'.

This is where you make your selection - a) to receive individual

emails, or to receive a daily digest which groups individual

emails into one collective email.

Regards,

Cris

>

> Hi ,

>

> That happens to me once in a while also. At first I thought maybe

I said something wrong and someone took me off of the list. Later I

mysteriously was back on the list. This cycle seems to have occurred

about 4 times over the past 2.5 years on the chat site.

>

> Does anyone have any advise for ?

>

> My best

> Aletha

> [low dose naltrexone] postings

>

>

> hi everyone i am having problems recieving emails from the group]

> can anyone please advise

> john

>

[Guest guest]

I find a lot of posts go into my spam box

lyn

Re: [low dose naltrexone] postings

 

[low dose naltrexone] postings

hi everyone i am having problems recieving emails from the group]

can anyone please advise

john

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