Re: Iam so confused can someone explain?

[Guest guest]

Sorry that you're going through this time of uncertainty, Faith.

Not everyone with RA has erosive disease.

Did you have swelling in any joints at the time of your visit and did your

rheumatologist observe it?

Obviously, something is going on. If not RA, to what did your physician

attribute your symptoms? Did he discuss the possibility that MTX has calmed

things down?

Maybe you should seek a second opinion.

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] Iam so confused can someone explain?

>I don't post much but read often.

>

> A short background. In Dec 2004 I had a sudden onset of severe joint

> pain, swelling, severe fatigue, all the usual for RA. ( icould hardly

> get out of bed the first 2 mos) My RF was 597. I had a mildly positive

> ANA. Initial xrays showed some osteo pinia (SP?) ( prior to this

> happening I developed moderate psoriasis as well, and hypothyroid) All

> tests for lupus were negative. I was given an initial dx of RA. I

> started on MTX in feb,,did not see any significant changes until april-

> may. Where I have had about a 40% improvement. I still have some joint

> swelling, sifnificant pain, and fatigue. My initial SED rate was

> normal. A sed rate and c-reative protien were done this week-normal.

> The x-rays taken this week were " completely normal " ( quote from

> doctor). Now the doctor says he believes I MAY NOT have RA. If this is

> not inflamation what is causing the swelling and pain?

>

> Is there such a thing as Non erosive RA.. IAM SO CONFUSED..while it is

> good news I may NOT have RA.. Iam at such a loss to understand what is

> going on with me. This has totally disrupted my life, I lost my job of

> 23 years.. I can't get through a day without a nap..if I do anything

> strenuos I pay for days. I am always in pain.

>

> Confused in california.

>

> Faith

[Guest guest]

Sorry that you're going through this time of uncertainty, Faith.

Not everyone with RA has erosive disease.

Did you have swelling in any joints at the time of your visit and did your

rheumatologist observe it?

Obviously, something is going on. If not RA, to what did your physician

attribute your symptoms? Did he discuss the possibility that MTX has calmed

things down?

Maybe you should seek a second opinion.

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] Iam so confused can someone explain?

>I don't post much but read often.

>

> A short background. In Dec 2004 I had a sudden onset of severe joint

> pain, swelling, severe fatigue, all the usual for RA. ( icould hardly

> get out of bed the first 2 mos) My RF was 597. I had a mildly positive

> ANA. Initial xrays showed some osteo pinia (SP?) ( prior to this

> happening I developed moderate psoriasis as well, and hypothyroid) All

> tests for lupus were negative. I was given an initial dx of RA. I

> started on MTX in feb,,did not see any significant changes until april-

> may. Where I have had about a 40% improvement. I still have some joint

> swelling, sifnificant pain, and fatigue. My initial SED rate was

> normal. A sed rate and c-reative protien were done this week-normal.

> The x-rays taken this week were " completely normal " ( quote from

> doctor). Now the doctor says he believes I MAY NOT have RA. If this is

> not inflamation what is causing the swelling and pain?

>

> Is there such a thing as Non erosive RA.. IAM SO CONFUSED..while it is

> good news I may NOT have RA.. Iam at such a loss to understand what is

> going on with me. This has totally disrupted my life, I lost my job of

> 23 years.. I can't get through a day without a nap..if I do anything

> strenuos I pay for days. I am always in pain.

>

> Confused in california.

>

> Faith

[Guest guest]

Faith,

I'm so sorry you're going through all this. I hope some answers start arriving

soon for you.

First of all you are not alone in your confusion. Until I started reading these

posts I thought I was the only one in the world like you, but far from it. ALL

my labs have always been normal, but I'm always hurting in at least a couple of

places, I can barely move after being still for any period of time, and walking

up a flight of stairs makes it feel like my knees, feet and hips have been set

on fire. I've been to 12 doctors (if you count the two ER drs) and had an

unnecessary back surgery but all health professionals are clueless.

The emotional effort we expend maintaining credibility; dealing with ignorance,

neglect and just plain nastiness in the health care community; coping with

constant pain; and dealing with the changes we must make in our lives to

accommodations are all huge factors in our exhaustion, I believe, although

there's a loss of physical stamina as well. I have struggled to keep my

licensed home daycare and would have lost the business months ago if my three

teen-agers hadn't stepped in to bail me out over and over. Financially, we've

spent over 15,000 dollars (and the insurance another 40,000, including the back

surgery, etc.) trying to find help and I am still just barely maintaining day by

day on tramadal and methotrexate (which hasn't started helping yet).

There IS something organic--something specific--a logical explanation for what's

going on with us and some day (LORD, please soon!!!) they'll find it. Then a

lot of doctors will have some apologizing to do, but I won't hold my breath.

I'm sorry this is short on answers. I've coped with ice packs, (I lie on the

floor and take one of those hard ice packs for putting in lunchboxes and put it

exactly under the point where the pain starts and press down on it--it helps for

my hips and along my spine, but only while I'm actually doing it) a massage

chair, stretching, praying and praying and praying, making collages to get my

mind off things, reading. I do everything slowly and steadily and have weeded

poisonous people completely out of my life. I have learned to prioritize and am

still trying to get over " Good Sport Syndrome " (like not wanting to dissapoint

family members so you do things to be a good sport even though you know you'll

pay for it)

I'm pissed off a good deal of the time, mostly because I know that better pain

management is available but the doctors in my area don't seem to think their

patients deserve it or something. They're so paranoid about helping drug

dealers I guess. (One rheumy said before I even asked for pain meds that he

would never give me narcotics because he could go to jail.) The stupid thing is

if we really did want to be drug addicts, we would hit the streets instead of

devoting our lives to a fake illness. Doesn't this seem like a no-brainer?????

I wish you peace as you find your way through this maze of an illness. Please

keep sharing if you get any new info. I'll be looking forward to hearing how

things progress for you and will keep you in my prayers.

laura

Faith <fmt2002@...> wrote:

I don't post much but read often.

A short background. In Dec 2004 I had a sudden onset of severe joint

pain, swelling, severe fatigue, all the usual for RA. ( icould hardly

get out of bed the first 2 mos) My RF was 597. I had a mildly positive

ANA. Initial xrays showed some osteo pinia (SP?) ( prior to this

happening I developed moderate psoriasis as well, and hypothyroid) All

tests for lupus were negative. I was given an initial dx of RA. I

started on MTX in feb,,did not see any significant changes until april-

may. Where I have had about a 40% improvement. I still have some joint

swelling, sifnificant pain, and fatigue. My initial SED rate was

normal. A sed rate and c-reative protien were done this week-normal.

The x-rays taken this week were " completely normal " ( quote from

doctor). Now the doctor says he believes I MAY NOT have RA. If this is

not inflamation what is causing the swelling and pain?

Is there such a thing as Non erosive RA.. IAM SO CONFUSED..while it is

good news I may NOT have RA.. Iam at such a loss to understand what is

going on with me. This has totally disrupted my life, I lost my job of

23 years.. I can't get through a day without a nap..if I do anything

strenuos I pay for days. I am always in pain.

Confused in california.

Faith

[Guest guest]

Faith,

I'm so sorry you're going through all this. I hope some answers start arriving

soon for you.

First of all you are not alone in your confusion. Until I started reading these

posts I thought I was the only one in the world like you, but far from it. ALL

my labs have always been normal, but I'm always hurting in at least a couple of

places, I can barely move after being still for any period of time, and walking

up a flight of stairs makes it feel like my knees, feet and hips have been set

on fire. I've been to 12 doctors (if you count the two ER drs) and had an

unnecessary back surgery but all health professionals are clueless.

The emotional effort we expend maintaining credibility; dealing with ignorance,

neglect and just plain nastiness in the health care community; coping with

constant pain; and dealing with the changes we must make in our lives to

accommodations are all huge factors in our exhaustion, I believe, although

there's a loss of physical stamina as well. I have struggled to keep my

licensed home daycare and would have lost the business months ago if my three

teen-agers hadn't stepped in to bail me out over and over. Financially, we've

spent over 15,000 dollars (and the insurance another 40,000, including the back

surgery, etc.) trying to find help and I am still just barely maintaining day by

day on tramadal and methotrexate (which hasn't started helping yet).

There IS something organic--something specific--a logical explanation for what's

going on with us and some day (LORD, please soon!!!) they'll find it. Then a

lot of doctors will have some apologizing to do, but I won't hold my breath.

I'm sorry this is short on answers. I've coped with ice packs, (I lie on the

floor and take one of those hard ice packs for putting in lunchboxes and put it

exactly under the point where the pain starts and press down on it--it helps for

my hips and along my spine, but only while I'm actually doing it) a massage

chair, stretching, praying and praying and praying, making collages to get my

mind off things, reading. I do everything slowly and steadily and have weeded

poisonous people completely out of my life. I have learned to prioritize and am

still trying to get over " Good Sport Syndrome " (like not wanting to dissapoint

family members so you do things to be a good sport even though you know you'll

pay for it)

I'm pissed off a good deal of the time, mostly because I know that better pain

management is available but the doctors in my area don't seem to think their

patients deserve it or something. They're so paranoid about helping drug

dealers I guess. (One rheumy said before I even asked for pain meds that he

would never give me narcotics because he could go to jail.) The stupid thing is

if we really did want to be drug addicts, we would hit the streets instead of

devoting our lives to a fake illness. Doesn't this seem like a no-brainer?????

I wish you peace as you find your way through this maze of an illness. Please

keep sharing if you get any new info. I'll be looking forward to hearing how

things progress for you and will keep you in my prayers.

laura

Faith <fmt2002@...> wrote:

I don't post much but read often.

A short background. In Dec 2004 I had a sudden onset of severe joint

pain, swelling, severe fatigue, all the usual for RA. ( icould hardly

get out of bed the first 2 mos) My RF was 597. I had a mildly positive

ANA. Initial xrays showed some osteo pinia (SP?) ( prior to this

happening I developed moderate psoriasis as well, and hypothyroid) All

tests for lupus were negative. I was given an initial dx of RA. I

started on MTX in feb,,did not see any significant changes until april-

may. Where I have had about a 40% improvement. I still have some joint

swelling, sifnificant pain, and fatigue. My initial SED rate was

normal. A sed rate and c-reative protien were done this week-normal.

The x-rays taken this week were " completely normal " ( quote from

doctor). Now the doctor says he believes I MAY NOT have RA. If this is

not inflamation what is causing the swelling and pain?

Is there such a thing as Non erosive RA.. IAM SO CONFUSED..while it is

good news I may NOT have RA.. Iam at such a loss to understand what is

going on with me. This has totally disrupted my life, I lost my job of

23 years.. I can't get through a day without a nap..if I do anything

strenuos I pay for days. I am always in pain.

Confused in california.

Faith

[Guest guest]

Yes the rheumy has seen and felt swelling..certainly not at its worst

but he has seen swelling in several joints. I got another email from

him after I responded back to him in the initial email, he basically

said that he has seen severe erosive cases of RA with a normal sed

rate, he has seen healthy people with +RF, he has seen people with

active RA with no erosions.. so i just needed to sit tight and

continue on MTX and wait and see what happens.. be happy i dont have

changes on the recent xrays.. it is just all frustrating.. i guess I

just want someone to say, I will be all better... UGH

> Sorry that you're going through this time of uncertainty, Faith.

>

> Not everyone with RA has erosive disease.

>

> Did you have swelling in any joints at the time of your visit and

did your

> rheumatologist observe it?

>

> Obviously, something is going on. If not RA, to what did your

physician

> attribute your symptoms? Did he discuss the possibility that MTX

has calmed

> things down?

>

> Maybe you should seek a second opinion.

>

>

>

> Not an MD

>

> I'll tell you where to go!

>

> Mayo Clinic in Rochester

> http://www.mayoclinic.org/rochester

>

> s Hopkins Medicine

> http://www.hopkinsmedicine.org

>

>

> [ ] Iam so confused can someone explain?

>

>

> >I don't post much but read often.

> >

> > A short background. In Dec 2004 I had a sudden onset of severe

joint

> > pain, swelling, severe fatigue, all the usual for RA. ( icould

hardly

> > get out of bed the first 2 mos) My RF was 597. I had a mildly

positive

> > ANA. Initial xrays showed some osteo pinia (SP?) ( prior to this

> > happening I developed moderate psoriasis as well, and

hypothyroid) All

> > tests for lupus were negative. I was given an initial dx of RA. I

> > started on MTX in feb,,did not see any significant changes until

april-

> > may. Where I have had about a 40% improvement. I still have some

joint

> > swelling, sifnificant pain, and fatigue. My initial SED rate was

> > normal. A sed rate and c-reative protien were done this week-

normal.

> > The x-rays taken this week were " completely normal " ( quote from

> > doctor). Now the doctor says he believes I MAY NOT have RA. If

this is

> > not inflamation what is causing the swelling and pain?

> >

> > Is there such a thing as Non erosive RA.. IAM SO CONFUSED..while

it is

> > good news I may NOT have RA.. Iam at such a loss to understand

what is

> > going on with me. This has totally disrupted my life, I lost my

job of

> > 23 years.. I can't get through a day without a nap..if I do

anything

> > strenuos I pay for days. I am always in pain.

> >

> > Confused in california.

> >

> > Faith

[Guest guest]

Yes the rheumy has seen and felt swelling..certainly not at its worst

but he has seen swelling in several joints. I got another email from

him after I responded back to him in the initial email, he basically

said that he has seen severe erosive cases of RA with a normal sed

rate, he has seen healthy people with +RF, he has seen people with

active RA with no erosions.. so i just needed to sit tight and

continue on MTX and wait and see what happens.. be happy i dont have

changes on the recent xrays.. it is just all frustrating.. i guess I

just want someone to say, I will be all better... UGH

> Sorry that you're going through this time of uncertainty, Faith.

>

> Not everyone with RA has erosive disease.

>

> Did you have swelling in any joints at the time of your visit and

did your

> rheumatologist observe it?

>

> Obviously, something is going on. If not RA, to what did your

physician

> attribute your symptoms? Did he discuss the possibility that MTX

has calmed

> things down?

>

> Maybe you should seek a second opinion.

>

>

>

> Not an MD

>

> I'll tell you where to go!

>

> Mayo Clinic in Rochester

> http://www.mayoclinic.org/rochester

>

> s Hopkins Medicine

> http://www.hopkinsmedicine.org

>

>

> [ ] Iam so confused can someone explain?

>

>

> >I don't post much but read often.

> >

> > A short background. In Dec 2004 I had a sudden onset of severe

joint

> > pain, swelling, severe fatigue, all the usual for RA. ( icould

hardly

> > get out of bed the first 2 mos) My RF was 597. I had a mildly

positive

> > ANA. Initial xrays showed some osteo pinia (SP?) ( prior to this

> > happening I developed moderate psoriasis as well, and

hypothyroid) All

> > tests for lupus were negative. I was given an initial dx of RA. I

> > started on MTX in feb,,did not see any significant changes until

april-

> > may. Where I have had about a 40% improvement. I still have some

joint

> > swelling, sifnificant pain, and fatigue. My initial SED rate was

> > normal. A sed rate and c-reative protien were done this week-

normal.

> > The x-rays taken this week were " completely normal " ( quote from

> > doctor). Now the doctor says he believes I MAY NOT have RA. If

this is

> > not inflamation what is causing the swelling and pain?

> >

> > Is there such a thing as Non erosive RA.. IAM SO CONFUSED..while

it is

> > good news I may NOT have RA.. Iam at such a loss to understand

what is

> > going on with me. This has totally disrupted my life, I lost my

job of

> > 23 years.. I can't get through a day without a nap..if I do

anything

> > strenuos I pay for days. I am always in pain.

> >

> > Confused in california.

> >

> > Faith

[Guest guest]

thanks laura.. i know there are a few of us in the same boat.

This is all so frustrating.. I always come back here and read from

time to time..but i found it was easier for me NOT to dwell on this

crap... I spend enough time dealing with the pain... BUT it does help

to talk to others who understand.. it is a catch 22..

> I don't post much but read often.

>

> A short background. In Dec 2004 I had a sudden onset of severe

joint

> pain, swelling, severe fatigue, all the usual for RA. ( icould

hardly

> get out of bed the first 2 mos) My RF was 597. I had a mildly

positive

> ANA. Initial xrays showed some osteo pinia (SP?) ( prior to this

> happening I developed moderate psoriasis as well, and hypothyroid)

All

> tests for lupus were negative. I was given an initial dx of RA. I

> started on MTX in feb,,did not see any significant changes until

april-

> may. Where I have had about a 40% improvement. I still have some

joint

> swelling, sifnificant pain, and fatigue. My initial SED rate was

> normal. A sed rate and c-reative protien were done this week-

normal.

> The x-rays taken this week were " completely normal " ( quote from

> doctor). Now the doctor says he believes I MAY NOT have RA. If this

is

> not inflamation what is causing the swelling and pain?

>

> Is there such a thing as Non erosive RA.. IAM SO CONFUSED..while it

is

> good news I may NOT have RA.. Iam at such a loss to understand what

is

> going on with me. This has totally disrupted my life, I lost my job

of

> 23 years.. I can't get through a day without a nap..if I do

anything

> strenuos I pay for days. I am always in pain.

>

> Confused in california.

>

> Faith

>

>

>

>

>

[Guest guest]

thanks laura.. i know there are a few of us in the same boat.

This is all so frustrating.. I always come back here and read from

time to time..but i found it was easier for me NOT to dwell on this

crap... I spend enough time dealing with the pain... BUT it does help

to talk to others who understand.. it is a catch 22..

> I don't post much but read often.

>

> A short background. In Dec 2004 I had a sudden onset of severe

joint

> pain, swelling, severe fatigue, all the usual for RA. ( icould

hardly

> get out of bed the first 2 mos) My RF was 597. I had a mildly

positive

> ANA. Initial xrays showed some osteo pinia (SP?) ( prior to this

> happening I developed moderate psoriasis as well, and hypothyroid)

All

> tests for lupus were negative. I was given an initial dx of RA. I

> started on MTX in feb,,did not see any significant changes until

april-

> may. Where I have had about a 40% improvement. I still have some

joint

> swelling, sifnificant pain, and fatigue. My initial SED rate was

> normal. A sed rate and c-reative protien were done this week-

normal.

> The x-rays taken this week were " completely normal " ( quote from

> doctor). Now the doctor says he believes I MAY NOT have RA. If this

is

> not inflamation what is causing the swelling and pain?

>

> Is there such a thing as Non erosive RA.. IAM SO CONFUSED..while it

is

> good news I may NOT have RA.. Iam at such a loss to understand what

is

> going on with me. This has totally disrupted my life, I lost my job

of

> 23 years.. I can't get through a day without a nap..if I do

anything

> strenuos I pay for days. I am always in pain.

>

> Confused in california.

>

> Faith

>

>

>

>

>

[Guest guest]

Faith, a friend of mine has polymyalgia rheumatica. This disease causes

severe joint pain, fatigue, etc. but supposedly does not cause joint

damage. My friend's SED rate does remain elevated, however. Her rheumy

uses this as a measure of how her disease is progressing. Just putting

that out there as a possibility. Sue

On Friday, September 23, 2005, at 02:22 AM, Faith wrote:

>

> Is there such a thing as Non erosive RA.. IAM SO CONFUSED..while it is

> good news I may NOT have RA.. Iam at such a loss to understand what is

> going on with me. This has totally disrupted my life, I lost my job of

> 23 years.. I can't get through a day without a nap..if I do anything

> strenuos I pay for days. I am always in pain.

[Guest guest]

Faith, a friend of mine has polymyalgia rheumatica. This disease causes

severe joint pain, fatigue, etc. but supposedly does not cause joint

damage. My friend's SED rate does remain elevated, however. Her rheumy

uses this as a measure of how her disease is progressing. Just putting

that out there as a possibility. Sue

On Friday, September 23, 2005, at 02:22 AM, Faith wrote:

>

> Is there such a thing as Non erosive RA.. IAM SO CONFUSED..while it is

> good news I may NOT have RA.. Iam at such a loss to understand what is

> going on with me. This has totally disrupted my life, I lost my job of

> 23 years.. I can't get through a day without a nap..if I do anything

> strenuos I pay for days. I am always in pain.