Diagnosis

[Guest guest]

I am in the same boat as you are when it comes to fibromyalgia. I WON " T

take the strong anti depressants they want me to take... now I do take

welbutrin which seems to do the trick with NO side effects, but it does

nothing for the pain, just my mental state of mind.

-

[Guest guest]

Meg:

I am not in a position to, sight unseen, challenge diagnoses by an MD

whose specialty after Internal medicine is Rheumatology. With that

caveat:

fibromyalgia, osteoA in knees and feet, AND PA upper extremeties and

lower back..Harrumph..In medical school diagnostics, they teach you

that when you hear hoofbeats--think horses, not zebras...in your

case, she/he seems to have heard not just one, but three, zebras...

I'm guessing you are probably over 45, and that may explain the

osteoA/knees & feet (so that one may be a Shetland pony, not a

zebra). The PA: Hands: do you have nail involvement, and/or pain in

the synovia or other changes? As to the back, are ankylosing

spondilitis-like changes present? PA certainly can involve the back,

but it can involve knees and feet as well...Accuracy of diagnoses

will depend on which tests were given and physical results measured

and observed, which you didn't give.

And then, the fact that the only medications you mention

(antidepressants): these aren't the first meds one would suspect

would be prescribed. I would shy away from such an approach myself;

there's nothing being done for the underlying disease process.

As for a PA--conjunctivitis relationship: If there is one, it's

buried in the literature; I can't find it, although I seem to recall

one instance I heard about, back in the mists of time. My personal

opinion is (the non-bacterial, non-viral forms of) conjunctivitis

would more likely, if at all, have a relationship with SLE and other

more systemically-involved arthopathies.

Lastly, shark cartilidge: Seen it bally-hooed in patent medicine ads,

and poo-pooed (at least as to the claims of the former) in medical

journals. Seems best to stick with the specialists with M.D.

following their names; heck, they finally got on board with a number

of vitamins.

Good luck, Meg.

> Hello there,

> I posted a couple of months ago and have recently seen a Rheum. who

> diagnosed me with fibromyalgia, osteo in knees and feet and

psoriatic

> in hands and lower back. My son on the same day was diagnosed with

> Lupus, not a good day!

> I came away fron consult not much wiser and wont be seen again as I

> wont take (for personal reasons) anti depressant medication.

> Does anyone know if psoriatic A is linked to frequent bouts of

> conjunctivitis? and have you had relief from arthritis by taking

> shark cartlidge?

> Thanks for listening, Meg

[Guest guest]

Hi Meg,

Yes to the link with conjunctivitis...I had serious issues with that long

before I ever had pain. You might want to find an opthamologist who

specializes in autoimmune related complications....

[Guest guest]

At 02:33 AM 3/12/2003 +0000, Meg wrote:

>I came away fron consult not much wiser and wont be seen again as I

>wont take (for personal reasons) anti depressant medication.

>Does anyone know if psoriatic A is linked to frequent bouts of

>conjunctivitis? and have you had relief from arthritis by taking

>shark cartlidge?

Meg, are you telling us that you won't be seeing the rheumatologist again

because you don't want to take an antidepressant? If so, that shouldn't

hold you back. You should always feel free to turn down medication without

hurting a relationship with a doctor.

Cod liver oil, with its high vitamin D content has been shown to be very

good for both inflammation and depression. You should look into that first

before trying out unproven remedies such as shark cartilage. St s Wort

has also shown a lot of promise as helpful with mild to moderate depression.

[Guest guest]

I was given antidepressants for fibro and they made me much worse (mentally and

physically). Anyone had any sucessful treatments for fibro? Most docs blow it

off like it is all in your head.

Les

Re: [ ] Diagnosis

I am in the same boat as you are when it comes to fibromyalgia. I WON " T

take the strong anti depressants they want me to take... now I do take

welbutrin which seems to do the trick with NO side effects, but it does

nothing for the pain, just my mental state of mind.

[Guest guest]

In a message dated 3/20/2003 6:00:52 PM Eastern Standard Time,

leslieiansa@... writes:

> I was given antidepressants for fibro and they made me much worse (mentally

> and physically). Anyone had any sucessful treatments for fibro? Most docs

> blow it off like it is all in your head.

>

> Les

My dr gave me the ultracet to deal with the pain from the fibro and flares

from the PA. It helps.

(((hugs)))

Smile,

Becky

[Guest guest]

Thanks Becky. I have tried Ultram and it didn't work. Is ultracet the same?

Currently I am taking Vicodin-ES. It helps but only for a couple of hours. My

GP said not to take more than 1 or 2 a day so I have only 4-8 hours of relief

and then I hurt real bad again. Two years ago I had taken darvocet and then

methadone from a pain management doctor (which I quit taking in Oct. of last

year). I wanted to get away from the stronger meds since I had built up a

tolerance last year, which has finally gone away, but I need something that will

provide relief longer than a couple of hours. I also take zanaflex for muscle

spasms. I have about 5 different balls? under my skin that I think are muscle

knots. Two of them are on the right and left side of my low back, 1 by each

shoulderblade and 1 on the right side of my neck. The rest of my neck/back

muscles are rock hard. I have taken so many different muscle relaxers and none

seem to help. Can this be fibro or something else?

thanks,

leslie

[Guest guest]

,

I started out taking Ultram. I never really took the pain away, but it did

dull it enough to enable me to work, drive, etc. I then progressed to

Lortabs. I do have a tolerance for them, but do not want to take anything

stronger. My Dr. Rx'd Ultracet to take in between the Lortabs. BAD

IDEA#$%^% for me. I had Steve King type nightmares! Just from taking 1

pill?????? Ultracet is Rx'd by our company Dr for employees who are hurt on

the job, and a number of them have also told me that the Ultracet gave them

horrible nightmares. So, please be ware and be warned. Everyone is

different, but I will Never take that again.

Gentle hugs & Prayers,

Carol M.

[Guest guest]

In a message dated 3/22/2003 7:46:06 PM Eastern Standard Time,

Dandcmayer@... writes:

> Ultracet is Rx'd by our company Dr for employees who are hurt on

> the job, and a number of them have also told me that the Ultracet gave them

>

> horrible nightmares. So, please be ware and be warned. Everyone is

> different, but I will Never take that again.

>

Very odd. I have absolutely no problem with the Ultracet and a friend's dr

prescribed it for her at night to help her sleep. She had trouble with her

leg due to a muscle tear she needed surgery for. But as you said, everyone

is diffrent. :-) It's like I can't take bactrum. I list it as an allergy

because I have such a severe reaction with side-effects...can we say no sleep

for days from taking it. I was walking around the house at 2 AM wide awake

as if I had just drank a pot of Starbucks!

Smile,

Becky

[Guest guest]

In a message dated 3/22/2003 7:46:05 PM Eastern Standard Time,

Dandcmayer@... writes:

> Ultracet is Rx'd by our company Dr for employees who are hurt on

> the job, and a number of them have also told me that the Ultracet gave them

>

> horrible nightmares.

Carol,

I don't understand how you were ok on Ultram which the generic is Tramadol

and not ultracet which is a mixture of Tramadol and tylenol. Did the ultram

give you nightmares? I have some ultracet sitting here in my medicine

cabinet and have not tried it yet. I was waiting until I ran out of Vicodin.

I certainly don't want horrible nightmares.

Janet

[Ed. Note: For some people (including me), Ultram does absolutely nothing for

pain. I would assume Ultracet would be the same, so I suggest you try it before

running out of Vicodin in case you are one of us unfortunate people for whom

Ultram/Ultracet is worthless. Ron]

[Guest guest]

> It is a serious issue when an excellent website such as this one gets into the

area of diagnosis. <

I can assume that the post you were referring to is mine?

I see your point in this discussion, and I can also understand how others would

would want a diagnosis, or hesitate to answer the original post.

I was not expecting a diagnosis, but just ideas of what possibly could be going

on. But I was just wanting a possible heads up and support from others who may

have experienced the same thing.

I leave the diagnosing to the docs.

One thing that this website is wonderful at is its support from its active

members. We learn from each others pain, and we pass the experiences on to

others who may be dealing with the same thing.

Vivian H.

[Guest guest]

- do I feel for you, I know the frustration you are feeling.

Was it 6 months ago when it first started? Almost 12 years ago when

I was diagnosed with fibromylagia by many gp's (couple of which I

went to through emergency), my doctor sent me to a rheumy, he just

said that I didn't have anything - nothing showed in my xrays or

blood tests, pulled me off the arthritic medication (my gp thought

it may have been that too) and sent me home.

Well now it does show in my blood and very little in my xrays (MRI's

are very hard to come by in my neck of the country)and the same

rheumy has confirmed PA. I know the frustration that I dealt with

in those 12 yrs just 'assuming' I had only FM - thank goodness for

my great family, my doctor, chiropractor (he has SO much experience

w/arthritis and PA!), and my massage therapist! Keep going and

pressing the issue - I think there is alot that these professionals

have to learn and unfortunately many are the guinea pigs.

All the best,

Jeannine

> I am in great need of some help. I am absolutely a wreck at this

> point.

>

> I sought out a second opinion just for the heck of it with a

> specialist at Penn and they are not convinced I have PA. They say

> that because no inflammation has shown up in my MRI of my hands

that

> is my be something else. The doc I saw today was the teacher of

my

> regular Rheum. and they are friends as well. I called my guy

already

> to go talk to him. The people at Penn say it may be joint pain

due

> to my double-jointedness or fibromylagia.

>

> I am, to say the least, very upset. Not because I want to have

this

> disease but because I finally had a name for what I was

experiencing

> and a course of treatment and a good support system (you folks)

and I

> was doing so well. I don't want to be back where I was 6 months

> ago. I don't want to go from doc to doc again with everyone

having a

> different opinion.

>

> I'm upset and I need to go be a mom, which means I have to stop

> crying now and get on with it. I'm just hoping someone has some

> ideas or thoughts here....

>

> Thanks...

>

[Guest guest]

I am sorry to hear about all of this. It is frustrating enough just being

ill and in pain, but it is even more frustrating not knowing what is wrong.

We have all been there and understand; hopefully you will find a correct

diagnosis soon. A second opinion is almost always good, though, because not

every doctor is always right. And if you find that you have fibro and not

PA, please still consider us to be a support group. Both illnesses are

lousy, and i am sure there are many people with both PA and fibro!

>From: " " <CARBEN1@...>

>Reply-

>

>Subject: [ ] diagnosis

>Date: Tue, 30 Sep 2003 17:31:23 -0000

>

>I am in great need of some help. I am absolutely a wreck at this

>point.

>

>I sought out a second opinion just for the heck of it with a

>specialist at Penn and they are not convinced I have PA. They say

>that because no inflammation has shown up in my MRI of my hands that

>is my be something else. The doc I saw today was the teacher of my

>regular Rheum. and they are friends as well. I called my guy already

>to go talk to him. The people at Penn say it may be joint pain due

>to my double-jointedness or fibromylagia.

>

>I am, to say the least, very upset. Not because I want to have this

>disease but because I finally had a name for what I was experiencing

>and a course of treatment and a good support system (you folks) and I

>was doing so well. I don't want to be back where I was 6 months

>ago. I don't want to go from doc to doc again with everyone having a

>different opinion.

>

>I'm upset and I need to go be a mom, which means I have to stop

>crying now and get on with it. I'm just hoping someone has some

>ideas or thoughts here....

>

>Thanks...

>

>

>

_________________________________________________________________

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[Guest guest]

Hello ,

I've been going through the same thing myself the last few months. I was

diagnosed with PA by one rheumy about three years ago.. A few months ago I

went to another rheumy, not because I doubted the diagnosis but because I

was unhappy with the first one's treatment. ( This consisted of writing me

a prescription for celebrex and pushing me out the door in 10 minutes.) The

second rheumy stated that he could find no evidence of PA but that I did

have fibromyalgia! He would not give a diagnosis of PA because he not find

significant swelling in my joints. In other words I just wasn't sick

enough! Like you I found this very distressing. As you say, after years of

brush-off and dismissals by doctors I finally had a name and a recognised

condition and now this! Like you as well I have gotten a lot of support and

information from the group and my first thought was that I would have to

start all over again.

All this is particularly distressing for me because two years ago I was put

on restricted duties by my employer due to my illness. I work for a

government department (luckily) and in order to get this exemption I had to

be examined by a government doctor, who made her recommendations based on a

diagnosis of PA. To complicate matters, I will probably have to apply to

reduce my work hours and claim a partial invalidity pension through my

superannuation scheme in the next few months because full time work is

getting beyond me. I've been afraid that this confusion regarding diagnosis

might jeopardise that.

I put this to the group in early august. I got a lot of support and useful

advice. First of all I found out that PA and fibro are not mutually

exclusive. That is, you can have both and that sometimes one can bring on

the other. Also that fibro is a bit of a 'bottom of the barrel' diagnosis

when Dr's aren't sure. I was also assured that there is no threshold of

'sick enough' for PA.

In fact several people suggested that I am just someone who doesn't tend to

complain a lot and I may be as ill as many others in the group. Like you, I

dreaded the thought of seeing yet another rheumy and getting a third

diagnosis but several of the group thought this was a good idea so I have

decided to do just that. I have an appointment the third week of October

and I will e-mail to let you know how it went.

One other thing, do you have a good relationship with your GP? Of all the

doctors I've seen over the last few years she's the one I trust the most and

she thinks it's PA. She's been my doctor for years so she really is the

only one who has witnessed ALL my symptoms at the time they occurred. I

think we can get a bit caught up with the use of so-called experts.

Auto-immune diseases have complex manifestations of symptoms than can never

be covered by one specialist, as we all know, so maybe sometimes the good

old GP is the one with the clearest picture.

of Melbourne

( Original Message -----

From: " " <CARBEN1@...>

< >

Sent: Wednesday, October 01, 2003 3:31 AM

Subject: [ ] diagnosis

> I am in great need of some help. I am absolutely a wreck at this

> point.

>

> I sought out a second opinion just for the heck of it with a

> specialist at Penn and they are not convinced I have PA. They say

> that because no inflammation has shown up in my MRI of my hands that

> is my be something else. The doc I saw today was the teacher of my

> regular Rheum. and they are friends as well. I called my guy already

> to go talk to him. The people at Penn say it may be joint pain due

> to my double-jointedness or fibromylagia.

>

> I am, to say the least, very upset. Not because I want to have this

> disease but because I finally had a name for what I was experiencing

> and a course of treatment and a good support system (you folks) and I

> was doing so well. I don't want to be back where I was 6 months

> ago. I don't want to go from doc to doc again with everyone having a

> different opinion.

>

> I'm upset and I need to go be a mom, which means I have to stop

> crying now and get on with it. I'm just hoping someone has some

> ideas or thoughts here....

>

> Thanks...

>

>

>

>

>

> Please visit our Psoriatic Arthritis Group's informational web page at:

> http://www.wpunj.edu/pa/ -- created and edited by list member

aka(raharris@...).

>

> Also,in August 2001,list member Jack aka Cornishpro@... began

to conduct extensive research which he publishes as the " Psoriatic Arthritis

Research Newsletter " , monthly in our email and digest format. Many thanks to

Jack. Back issues of the newsletter are stored on our PA webpage as well as

the archives of the list.

>

> Don't forget that the list archives comprise a tremendous amount of

information (Over three years of messages and answers).Feel free to browse

them at your convenience.

>

> LET'S HEAR FROM SOME OF YOU LURKERS out there! If you have a comment or

question, chances are there is a person who has been around a while who can

help you out with AT LEAST an educated guess for an answer! If not,we can

steer you in the right direction with a good website to go to,

>

> Blessings and Peace,

>

> Atwood-Stack, Founder

> Alan , Web & List Editor

> Jack , Newsletter Editor

> Pat Bias, List Editor

> Ron Dotson, List Editor

> Orin, List Editor

> , List Editor

> and any others who help in any way (thank you!)

>

>

>

[Guest guest]

Hearing your situation is so helpful thank you and I do look

forward to hearing about your next appt. for the 3rd opinion. This

is the amazing part of group....just when you think you are going

under the water, hands reach out and pull you up.

My GP (who has a great deal of experience with PA) thinks it is PA

but I have another appt. with her tomorrow to discuss the entire

issue.

The past few emails from other folks re: pain w/o swelling have also

been helpful, once again symptoms but no tangible evidence.

All I know is the MTX has reduced my pain so much that I am almost

completely off narcotics (only use as PRN now and not often)and I can

drive and pump gas and pick up my kids w/o wanting to scream. I also

know that MTX does not work for Fibromyalgia.

Hope everyone has a peaceful weekend.

best,

> Hello ,

> I've been going through the same thing myself the last few months.

I was

> diagnosed with PA by one rheumy about three years ago.. A few

months ago I

> went to another rheumy, not because I doubted the diagnosis but

because I

> was unhappy with the first one's treatment. ( This consisted of

writing me

> a prescription for celebrex and pushing me out the door in 10

minutes.) The

> second rheumy stated that he could find no evidence of PA but that

I did

> have fibromyalgia! He would not give a diagnosis of PA because he

not find

> significant swelling in my joints. In other words I just wasn't

sick

> enough! Like you I found this very distressing. As you say, after

years of

> brush-off and dismissals by doctors I finally had a name and a

recognised

> condition and now this! Like you as well I have gotten a lot of

support and

> information from the group and my first thought was that I would

have to

> start all over again.

> All this is particularly distressing for me because two years ago

I was put

> on restricted duties by my employer due to my illness. I work for a

> government department (luckily) and in order to get this exemption

I had to

> be examined by a government doctor, who made her recommendations

based on a

> diagnosis of PA. To complicate matters, I will probably have to

apply to

> reduce my work hours and claim a partial invalidity pension through

my

> superannuation scheme in the next few months because full time work

is

> getting beyond me. I've been afraid that this confusion regarding

diagnosis

> might jeopardise that.

> I put this to the group in early august. I got a lot of support

and useful

> advice. First of all I found out that PA and fibro are not

mutually

> exclusive. That is, you can have both and that sometimes one can

bring on

> the other. Also that fibro is a bit of a 'bottom of the barrel'

diagnosis

> when Dr's aren't sure. I was also assured that there is no

threshold of

> 'sick enough' for PA.

> In fact several people suggested that I am just someone who doesn't

tend to

> complain a lot and I may be as ill as many others in the group.

Like you, I

> dreaded the thought of seeing yet another rheumy and getting a third

> diagnosis but several of the group thought this was a good idea so

I have

> decided to do just that. I have an appointment the third week of

October

> and I will e-mail to let you know how it went.

> One other thing, do you have a good relationship with your GP? Of

all the

> doctors I've seen over the last few years she's the one I trust the

most and

> she thinks it's PA. She's been my doctor for years so she really

is the

> only one who has witnessed ALL my symptoms at the time they

occurred. I

> think we can get a bit caught up with the use of so-called experts.

> Auto-immune diseases have complex manifestations of symptoms than

can never

>

[Guest guest]

, Your regular doctor should be allowed to report her diagnosis

and basis in any hearings and judgements. Also she should be able to

find you a rheumy that would be able to disgnose and distinguish

between PA and FM. The two conditions share a big bag of common

symptoms, but FM is not degenerative, but a complex pain disorder

that is triggered by painful conditions, PA is degenerative and is

painful enough to trigger FM, hence one can have both.

I would think the biggest concern should be the PA as it is

degenerative and it is probably the trigger for the FM. You should

bring all this up with your regular doctor for consultation and for

referrals. Pain is pain, and an degeneration are something else.

Bless you. Go to the GP and let her lead you through this mess. PA

and FM are both confusing, you need the solid thinking of your

trusted GP.

JudiRose

[Editor's Note: Both JudiRose's post, and the post she responds to (below),

point to what I would suggest is a very important precept. The incredible

advances in the sciences which undergird medicine have necessarily led to

specialization, wherein one practitioner knows more and more about less and

less.

Medicine is far more analytical than it is synthetical, and all too often favors

a reductionist, mechanical model (rather than a gestalt-- " the whole is greater

than the sum of the parts " --model, which is used more often in mental health by

psychologists than it's used in medicine).

This makes it imperative that we have a professional who cares for the " whole "

of us. The ideal candidate is indeed our " family " doctor, be it a general

practitioner (a disappearing breed), or perhaps their latter-day incarnation,

the internist (not, of course, to be confused with " interns " ). The internal

medicine " specialist " can help us achieve the balance we need, so that PA and

rheumatology does not become all-consuming, and so that we do not lose focus on

the forest because we are paying too much attention to a particular tree.

D.]

> Hello ,

> I've been going through the same thing myself the last few months.

I was

> diagnosed with PA by one rheumy about three years ago.. A few

months ago I

> went to another rheumy, not because I doubted the diagnosis but

because I

> was unhappy with the first one's treatment. ( This consisted of

writing me

> a prescription for celebrex and pushing me out the door in 10

minutes.) The

> second rheumy stated that he could find no evidence of PA but that

I did

> have fibromyalgia! He would not give a diagnosis of PA because he

not find

> significant swelling in my joints. In other words I just wasn't

sick

> enough! Like you I found this very distressing. As you say, after

years of

> brush-off and dismissals by doctors I finally had a name and a

recognised

> condition and now this! Like you as well I have gotten a lot of

support and

> information from the group and my first thought was that I would

have to

> start all over again.

> All this is particularly distressing for me because two years ago

I was put

> on restricted duties by my employer due to my illness. I work for a

> government department (luckily) and in order to get this exemption

I had to

> be examined by a government doctor, who made her recommendations

based on a

> diagnosis of PA. To complicate matters, I will probably have to

apply to

> reduce my work hours and claim a partial invalidity pension through

my

> superannuation scheme in the next few months because full time work

is

> getting beyond me. I've been afraid that this confusion regarding

diagnosis

> might jeopardise that.

> I put this to the group in early august. I got a lot of support

and useful

> advice. First of all I found out that PA and fibro are not

mutually

> exclusive. That is, you can have both and that sometimes one can

bring on

> the other. Also that fibro is a bit of a 'bottom of the barrel'

diagnosis

> when Dr's aren't sure. I was also assured that there is no

threshold of

> 'sick enough' for PA.

> In fact several people suggested that I am just someone who doesn't

tend to

> complain a lot and I may be as ill as many others in the group.

Like you, I

> dreaded the thought of seeing yet another rheumy and getting a third

> diagnosis but several of the group thought this was a good idea so

I have

> decided to do just that. I have an appointment the third week of

October

> and I will e-mail to let you know how it went.

> One other thing, do you have a good relationship with your GP? Of

all the

> doctors I've seen over the last few years she's the one I trust the

most and

> she thinks it's PA. She's been my doctor for years so she really

is the

> only one who has witnessed ALL my symptoms at the time they

occurred. I

> think we can get a bit caught up with the use of so-called experts.

> Auto-immune diseases have complex manifestations of symptoms than

can never

> be covered by one specialist, as we all know, so maybe sometimes

the good

> old GP is the one with the clearest picture.

>

> of Melbourne

>

> ( Original Message -----

> From: " " <CARBEN1@a...>

> < >

> Sent: Wednesday, October 01, 2003 3:31 AM

> Subject: [ ] diagnosis

>

>

> > I am in great need of some help. I am absolutely a wreck at this

> > point.

> >

> > I sought out a second opinion just for the heck of it with a

> > specialist at Penn and they are not convinced I have PA. They say

> > that because no inflammation has shown up in my MRI of my hands

that

> > is my be something else. The doc I saw today was the teacher of

my

> > regular Rheum. and they are friends as well. I called my guy

already

> > to go talk to him. The people at Penn say it may be joint pain

due

> > to my double-jointedness or fibromylagia.

> >

> > I am, to say the least, very upset. Not because I want to have

this

> > disease but because I finally had a name for what I was

experiencing

> > and a course of treatment and a good support system (you folks)

and I

> > was doing so well. I don't want to be back where I was 6 months

> > ago. I don't want to go from doc to doc again with everyone

having a

> > different opinion.

> >

> > I'm upset and I need to go be a mom, which means I have to stop

> > crying now and get on with it. I'm just hoping someone has some

> > ideas or thoughts here....

> >

> > Thanks...

> >

> >

> >

> >

> >

> > Please visit our Psoriatic Arthritis Group's informational web

page at:

> > http://www.wpunj.edu/pa/ -- created and edited by list member

> aka(raharris@y...).

> >

> > Also,in August 2001,list member Jack aka Cornishpro@a...

began

> to conduct extensive research which he publishes as the " Psoriatic

Arthritis

> Research Newsletter " , monthly in our email and digest format. Many

thanks to

> Jack. Back issues of the newsletter are stored on our PA webpage as

well as

> the archives of the list.

> >

> > Don't forget that the list archives comprise a tremendous amount

of

> information (Over three years of messages and answers).Feel free to

browse

> them at your convenience.

> >

> > LET'S HEAR FROM SOME OF YOU LURKERS out there! If you have a

comment or

> question, chances are there is a person who has been around a while

who can

> help you out with AT LEAST an educated guess for an answer! If

not,we can

> steer you in the right direction with a good website to go to,

> >

> > Blessings and Peace,

> >

> > Atwood-Stack, Founder

> > Alan , Web & List Editor

> > Jack , Newsletter Editor

> > Pat Bias, List Editor

> > Ron Dotson, List Editor

> > Orin, List Editor

> > , List Editor

> > and any others who help in any way (thank you!)

> >

> >

> >

[Guest guest]

> Hello ,

> I've been going through the same thing myself the last few months.

I was

> diagnosed with PA by one rheumy about three years ago.. A few

months ago I

> went to another rheumy, not because I doubted the diagnosis but

because I

> was unhappy with the first one's treatment. ( This consisted of

writing me

> a prescription for celebrex and pushing me out the door in 10

minutes.) The

> second rheumy stated that he could find no evidence of PA but that

I did

> have fibromyalgia! He would not give a diagnosis of PA because he

not find

> significant swelling in my joints. In other words I just wasn't

sick

> enough! Like you I found this very distressing. As you say, after

years of

> brush-off and dismissals by doctors I finally had a name and a

recognised

> condition and now this! Like you as well I have gotten a lot of

support and

> information from the group and my first thought was that I would

have to

> start all over again.

> All this is particularly distressing for me because two years ago

I was put

> on restricted duties by my employer due to my illness. I work for a

> government department (luckily) and in order to get this exemption

I had to

> be examined by a government doctor, who made her recommendations

based on a

> diagnosis of PA. To complicate matters, I will probably have to

apply to

> reduce my work hours and claim a partial invalidity pension through

my

> superannuation scheme in the next few months because full time work

is

> getting beyond me. I've been afraid that this confusion regarding

diagnosis

> might jeopardise that.

> I put this to the group in early august. I got a lot of support

and useful

> advice. First of all I found out that PA and fibro are not

mutually

> exclusive. That is, you can have both and that sometimes one can

bring on

> the other. Also that fibro is a bit of a 'bottom of the barrel'

diagnosis

> when Dr's aren't sure. I was also assured that there is no

threshold of

> 'sick enough' for PA.

> In fact several people suggested that I am just someone who doesn't

tend to

> complain a lot and I may be as ill as many others in the group.

Like you, I

> dreaded the thought of seeing yet another rheumy and getting a third

> diagnosis but several of the group thought this was a good idea so

I have

> decided to do just that. I have an appointment the third week of

October

> and I will e-mail to let you know how it went.

> One other thing, do you have a good relationship with your GP? Of

all the

> doctors I've seen over the last few years she's the one I trust the

most and

> she thinks it's PA. She's been my doctor for years so she really

is the

> only one who has witnessed ALL my symptoms at the time they

occurred. I

> think we can get a bit caught up with the use of so-called experts.

> Auto-immune diseases have complex manifestations of symptoms than

can never

> be covered by one specialist, as we all know, so maybe sometimes

the good

> old GP is the one with the clearest picture.

>

> of Melbourne

>

> ( Original Message -----

> From: " " <CARBEN1@a...>

> < >

> Sent: Wednesday, October 01, 2003 3:31 AM

> Subject: [ ] diagnosis

>

>

> > I am in great need of some help. I am absolutely a wreck at this

> > point.

> >

> > I sought out a second opinion just for the heck of it with a

> > specialist at Penn and they are not convinced I have PA. They say

> > that because no inflammation has shown up in my MRI of my hands

that

> > is my be something else. The doc I saw today was the teacher of

my

> > regular Rheum. and they are friends as well. I called my guy

already

> > to go talk to him. The people at Penn say it may be joint pain

due

> > to my double-jointedness or fibromylagia.

> >

> > I am, to say the least, very upset. Not because I want to have

this

> > disease but because I finally had a name for what I was

experiencing

> > and a course of treatment and a good support system (you folks)

and I

> > was doing so well. I don't want to be back where I was 6 months

> > ago. I don't want to go from doc to doc again with everyone

having a

> > different opinion.

> >

> > I'm upset and I need to go be a mom, which means I have to stop

> > crying now and get on with it. I'm just hoping someone has some

> > ideas or thoughts here....

> >

> > Thanks...

> >

> >

> >

> >

> >

> > Please visit our Psoriatic Arthritis Group's informational web

page at:

> > http://www.wpunj.edu/pa/ -- created and edited by list member

> aka(raharris@y...).

> >

> > Also,in August 2001,list member Jack aka Cornishpro@a...

began

> to conduct extensive research which he publishes as the " Psoriatic

Arthritis

> Research Newsletter " , monthly in our email and digest format. Many

thanks to

> Jack. Back issues of the newsletter are stored on our PA webpage as

well as

> the archives of the list.

> >

> > Don't forget that the list archives comprise a tremendous amount

of

> information (Over three years of messages and answers).Feel free to

browse

> them at your convenience.

> >

> > LET'S HEAR FROM SOME OF YOU LURKERS out there! If you have a

comment or

> question, chances are there is a person who has been around a while

who can

> help you out with AT LEAST an educated guess for an answer! If

not,we can

> steer you in the right direction with a good website to go to,

> >

> > Blessings and Peace,

> >

> > Atwood-Stack, Founder

> > Alan , Web & List Editor

> > Jack , Newsletter Editor

> > Pat Bias, List Editor

> > Ron Dotson, List Editor

> > Orin, List Editor

> > , List Editor

> > and any others who help in any way (thank you!)

> >

> >

> >

[Guest guest]

In a message dated 10/3/2003 9:52:52 PM Eastern Daylight Time, niala@...

writes:

> work for a

> government department (luckily) and in order to get this exemption I had to

> be examined by a government doctor, who made her

> recommendations based on a

> diagnosis of PA.

Hi ,

I have been through the disability thing twice now, and for whatever its worth,

I would fight hard to get/keep your PA diagnosis. For whatever reason,

fibromyalgia is not taken as seriously by disability insurers and its harder to

have a claim approved. Make sure the doctor includes EVERYTHING you have, even

if it seems under control or minor (like thyroid disease, etc). Also, my doctor

considers PA and fibro both " autonomic nervous system disfunction " which scares

insurance companies as well.

Anyway, hope that helps....

A

[Guest guest]

Hello . I have posted this on the site but I thought I should send it

straight to you personally as well. I hope it doesn't just add to your

confusion.

of Melbourne

Hello, I don't know if everyone remembers but a couple of months ago I

posted a message regarding confusion in relation to my diagnosis. One rheumy

said PA and one said fibromyalgia. I was given a lot of helpful advice

including that I seek a third opinion. I have now done this and the

diagnosis was fibromyalgia. The rheumy said that there was absolutely no

evidence of a major inflammatory condition and in any case I would have been

a lot worse by now. (I've had the condition for four years).This is of

course good news in some respects but what he said then was a bit

disturbing. He said that he does not consider fibromyalgia to be a disease

but just the result of a person developing weak muscles. The fact that I

also had IBS, a classic fibro symptom, he dismissed. He told me that I could

be back to my old level of health and off

anti-inflammatories within 12 months if I just go to a gym and commence an

intensive muscle strengthening program. I told him that when I was first

diagnosed I tried to exercise on numerous occasions only to have flare ups

that could last weeks. He told me as the pain was not a sign of any tissue

or bone damage I need to go work through it and start the program at a low

level and then build up. Now before everyone condemns what he said, I

should point out that he did spend almost an hour with me and put me through

a fairly rigorous (not to mention painful) number of tests to check my

strength and flexibility.He also told me that I have hypermobility

(unusually loose joints) and this would have exacerbated the original onset

of the pain which has just continued because I was so unfit. He also told

me to check a group of articles by Deborah Barret found under

ww.quackwatch.com because there was a lot of nonsense on the net about

fibromyalgia. I did check out these articles and she seems to take a lot

more seriously than the rheumy and says exercise can definitely lead to an

improvement in quality of life but she nothing about being 'cured' by it. I

also managed to find a couple of articles linking fibro and hypermobility.

Now I'm not sure what my next step is. I started out being very distressed

at this man's dismissal of my illness but after reading the articles I

started to think 'what if he's right?' He certainly took a lot more trouble

with me than anyone else and admitted he is a very 'physical' diagnostician.

In other words while I wasn't sure if I believed what he was saying he came

across as a conscientious and caring doctor and if he's right I may well be

able to get my old life back. I have to admit that the next day I felt

strong for the first time in a long time and that my body was not my enemy

but just something I could fix with hard work and discipline. If it hurt to

do something I just kept on doing it confident that I wasn't injuring

myself. I'll probably go through a number of changes like this over the

next few weeks. One complication is that I have been considering reducing

my work hours and going on a partial invalidity pension as full time work

was just getting too hard. The rheumy, while admitting he was specialist

with a narrow 'arthritis' based viewpoint, said that if he was the assessing

medical officer he wouldn't grant and that no-one gets invalidity on a fibro

diagnosis alone.

I have posted this because I want other people's opinions on what has gone

on here. Is this man right or is he one of those die-

hards for whom, if it doesn't show up on a test, it doesn't exist. I also

wanted some advice on good fibro sites. He's right about one thing, there is

a bewildering amount of fibro information on the net. I know there are a

number of members who have fibro and PA and I would love to hear from them.

I am going to stay with the group for a while longer to see how things pan

out. I am visiting my GP next week, by that time she should have the

rheumy's report.

Thanks,

of Melbourne.

[ ] diagnosis

> I am in great need of some help. I am absolutely a wreck at this

> point.

>

> I sought out a second opinion just for the heck of it with a

> specialist at Penn and they are not convinced I have PA. They say

> that because no inflammation has shown up in my MRI of my hands that

> is my be something else. The doc I saw today was the teacher of my

> regular Rheum. and they are friends as well. I called my guy already

> to go talk to him. The people at Penn say it may be joint pain due

> to my double-jointedness or fibromylagia.

>

> I am, to say the least, very upset. Not because I want to have this

> disease but because I finally had a name for what I was experiencing

> and a course of treatment and a good support system (you folks) and I

> was doing so well. I don't want to be back where I was 6 months

> ago. I don't want to go from doc to doc again with everyone having a

> different opinion.

>

> I'm upset and I need to go be a mom, which means I have to stop

> crying now and get on with it. I'm just hoping someone has some

> ideas or thoughts here....

>

> Thanks...

>

>

>

>

>

> Please visit our Psoriatic Arthritis Group's informational web page at:

> http://www.wpunj.edu/pa/ -- created and edited by list member

aka(raharris@...).

>

> Also,in August 2001,list member Jack aka Cornishpro@... began

to conduct extensive research which he publishes as the " Psoriatic Arthritis

Research Newsletter " , monthly in our email and digest format. Many thanks to

Jack. Back issues of the newsletter are stored on our PA webpage as well as

the archives of the list.

>

> Don't forget that the list archives comprise a tremendous amount of

information (Over three years of messages and answers).Feel free to browse

them at your convenience.

>

> LET'S HEAR FROM SOME OF YOU LURKERS out there! If you have a comment or

question, chances are there is a person who has been around a while who can

help you out with AT LEAST an educated guess for an answer! If not,we can

steer you in the right direction with a good website to go to,

>

> Blessings and Peace,

>

> Atwood-Stack, Founder

> Alan , Web & List Editor

> Jack , Newsletter Editor

> Pat Bias, List Editor

> Ron Dotson, List Editor

> Orin, List Editor

> , List Editor

> and any others who help in any way (thank you!)

>

>

>

[Guest guest]

I thought I had posted this but apparently I sent it to the wrong place. I

want to thank everyone who answered my questions about diagnosis and the

great articles and sites referred to me. I DID go for my follow up visist

but the doctor is having a difficult time diagnosing me. Apparently, blood

shows positive for RA as well as Lupus and Hepatitis! Whew! He explained

what those diseases were and is going to get with my Pulmonary Hypertension

specialist to see if he sees any connection. Meantime its back to Prednisone

and call him in a few weeks. And Hallelujah! He had no problem prescribing

some darvocet for the pain. When I find out more I will post if it will

help any one else who is having problems getting diagnosed. -----Suzanne

-- [ ] Re: New to Group

Hi Dionne,....Welcome to the group, sorry the reason why you are

here, but we are all here for each other. I feel angry, it is hard

not to, because it's like our lives our robbed of our life.

I hope that you take the time, and get to know us, I am here for you,

Tawny

> Hi i have only just recently been diagnosed with RA I'm 36 with 3

> children with special needs. I still feel quite overwhelmed and

angry

> that i have this. i have not had a lot of support from anyone but

my

> husband has anyone any info on how i can find some support in the

> South East UK. Thanks and kind regards Dionne

[Guest guest]

I hope you get your answers soon, Suzanne; however, sometimes the

correct diagnosis can take some time.

How long have you had pulmonary hypertension?

Glad you don't have to worry about getting meds for your pain!

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

Re: [ ] Re: Diagnosis

> I thought I had posted this but apparently I sent it to the wrong

place. I

> want to thank everyone who answered my questions about diagnosis and

the

> great articles and sites referred to me. I DID go for my follow up

visist

> but the doctor is having a difficult time diagnosing me. Apparently,

blood

> shows positive for RA as well as Lupus and Hepatitis! Whew! He

explained

> what those diseases were and is going to get with my Pulmonary

Hypertension

> specialist to see if he sees any connection. Meantime its back to

Prednisone

> and call him in a few weeks. And Hallelujah! He had no problem

prescribing

> some darvocet for the pain. When I find out more I will post if it

will

> help any one else who is having problems getting

diagnosed. -----Suzanne

[Guest guest]

Suzanne,

I am very interested if what they have to say and if they think there

might be any connection with your Pulmonary Hypertension. I, too,

have pulmonary hypertension as well as a number of other maladies

besides RA. I may have missed some posts, but you are the first I've

noticed that also has pulmonary hypertension. What treatment are you

on for it? I'm taking Tracleer. I don't know if there is a

correlation or if it's coincidence or something else, but since I

began taking Tracleer my coag levels have been very difficult to get

and stay in therapeutic ranges.

Elaine in Vegas

> > Hi i have only just recently been diagnosed with RA I'm 36 with 3

> > children with special needs. I still feel quite overwhelmed and

> angry

> > that i have this. i have not had a lot of support from anyone but

> my

> > husband has anyone any info on how i can find some support in the

> > South East UK. Thanks and kind regards Dionne

>

>

>

>

[Guest guest]

Well, I have had PH (Pulmonary Hypertension) for about 4 years now. It

is very rare and fatal but life can be prolonged using certain meds. I use

Flolan - a liquid medicine that I mix daily and it is permanently atached

on a lineinto my chest(no swimming for me LOL!) So, as you say this whole

thing may take some time to diagnosis but I will just have to be patient.

Since there is no cure as long as I am not in too much pain or getting too

much worse without the proper treatment I can hang in there. And the saga

goes on.......LOL! Life sure does like to test us doesnt't it?

Suzanne

-- Re: [ ] Re: Diagnosis

I hope you get your answers soon, Suzanne; however, sometimes the

correct diagnosis can take some time.

How long have you had pulmonary hypertension?

Glad you don't have to worry about getting meds for your pain!

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

Re: [ ] Re: Diagnosis

> I thought I had posted this but apparently I sent it to the wrong

place. I

> want to thank everyone who answered my questions about diagnosis and

the

> great articles and sites referred to me. I DID go for my follow up

visist

> but the doctor is having a difficult time diagnosing me. Apparently,

blood

> shows positive for RA as well as Lupus and Hepatitis! Whew! He

explained

> what those diseases were and is going to get with my Pulmonary

Hypertension

> specialist to see if he sees any connection. Meantime its back to

Prednisone

> and call him in a few weeks. And Hallelujah! He had no problem

prescribing

> some darvocet for the pain. When I find out more I will post if it

will

> help any one else who is having problems getting

diagnosed. -----Suzanne

[Guest guest]

Elaine, that is soooo interesting that you also are living with PH. I will

see what my doctors say about any correlation with these two diseases. Do

you have RA? The Ra doc said that RA can affect the lungs as well as other

organs so maybe thats whats happening. Except that I had the PH FIRST and

not the other way around. Very weird. Will let you know what else they say.

Suzanne

-- [ ] Re: Diagnosis

Suzanne,

I am very interested if what they have to say and if they think there

might be any connection with your Pulmonary Hypertension. I, too,

have pulmonary hypertension as well as a number of other maladies

besides RA. I may have missed some posts, but you are the first I've

noticed that also has pulmonary hypertension. What treatment are you

on for it? I'm taking Tracleer. I don't know if there is a

correlation or if it's coincidence or something else, but since I

began taking Tracleer my coag levels have been very difficult to get

and stay in therapeutic ranges.

Elaine in Vegas

> > Hi i have only just recently been diagnosed with RA I'm 36 with 3

> > children with special needs. I still feel quite overwhelmed and

> angry

> > that i have this. i have not had a lot of support from anyone but

> my

> > husband has anyone any info on how i can find some support in the

> > South East UK. Thanks and kind regards Dionne

>

>

>

>

[Guest guest]

Yes, Suzy, life can come up with some awful ways to challenge us!

Is your physician thinking it may be hepatitis C? There is an

association of chronic hepatitis C infection with pulmonary

hypertension.

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

Re: [ ] Re: Diagnosis

> Well, I have had PH (Pulmonary Hypertension) for about 4 years

now. It

> is very rare and fatal but life can be prolonged using certain meds.

I use

> Flolan - a liquid medicine that I mix daily and it is permanently

atached

> on a lineinto my chest(no swimming for me LOL!) So, as you say this

whole

> thing may take some time to diagnosis but I will just have to be

patient.

> Since there is no cure as long as I am not in too much pain or getting

too

> much worse without the proper treatment I can hang in there. And the

saga

> goes on.......LOL! Life sure does like to test us doesnt't it?

>

> Suzanne