new member from Colorado

[Guest guest]

Hi

I know where your at, been there, still there some days:) Piecing together

the whys was important for me too. Found a kind of peace with it all when I

felt I had it figured. The catalogue of events and insults, the part I played

(unwittingly) and does help to get it all in to perspective, then move on and

turn that anger and frustration into something positive, helping the sick

child get healthy again. My sick kid looked the picture of health, a few non

invasive tests (urine, stool and hair) revealed a quite different picture of

his functioning. Check out this groups files section, welcome aboard, you

have great company for this journey

Mandi in UK

PS Enzymes and Autism is also excellent resource for all sorts, not just

enzymes which BTW were a breakthrough for us

> Hello -

>

> I am a mother of 3 boys 8, 6, and 5. I am new to this site, and new

> to Colorado after living in California for 12 years.

>

> My 5 year old, has been diagnosed with Autism (mild). I am

> sure that many of us have the same traumatic conversations with

> experts after experts, doctors and more doctors, only to be given a

> plateful of information: " Behavioral, ADD, ADHD, Sensory

> Integration, Autism, Medication, Occupational Therapy, Speech, " ....

>

> The list goes on and on. I have been through so many doctors and

> experts - much of it because I cannot accept any ONE answer. The

> more information I am given, the more questions I have. The more

> questions I have, the more research I do.

>

> I work full time, and this issue with my son has consumed me. It's

> safe to say that I am obsessed with finding answers. Why ?

> Perhaps I did many of the same things some of you did. We first

> ask: what is wrong? Why is my child not normal? Why has he been

> kicked out of 4 daycare centers and bitten every child in the class?

> Why does he not look others in the eye? Why does he chew his clothes?

>

> We then look to our pediatritian. The ball rolls from there. The

> questionnaires follow - the questions that we don't always remember

> exactly, like when your child first lifted his head, first uttered a

> word, first looked you in the eye.

>

> I have looked for many answers. Autism does not run in our family,

> and I had a very healthy pregnancy. We have all asked, " what did I

> do when I was pregnant? Did I not cuddle my child enough? Should I

> have stayed at home longer instead of going back to work so soon? "

> I have been through an enormous sense of parent guilt - what did I do

> wrong? Has anybody else been there?

>

> When was 2 1/2 years, I was so starved for answers. He was a

> very happy pre-schooler, communicating, laughing, singing. Then we

> moved. Then it started. The speech stopped, the smiles stopped, the

> agressive behavior began, and my depression set in. The last 2 years

> of my life have been a difficult journey. I have matured much since,

> and have a much greater understanding of what Autism is, what SID is,

> all those initials that most of us on this site know what they

> actually stand for. I KIND OF know what it means when my child wears

> weights on his feet, why he jumps up and down constantly, why my

> child throws a level 10 tantrum, why he cries for something, and why

> he is so mezmorized at silly things at times. WHY?

>

> is now turning 5 and is in a special program for Autism. He

> sees an Occupational Therapist, a Speech Therapist, and a Behavior

> Therapist. I have spread the issue around in a 3-person triangle

> with hopes of my son improving. I spend my time learning about why

> he does the things he does. Why he thinks the way he thinks. Why he

> cries when he does. I want to understand him so badly, that all of

> the experts in the world cannot tell me what is wrong with him. Do

> our new aquaintances, friends and neighbors all say, " He'll grow out

> of it, he's just a kid, he's just a boy " ?? Or do strangers

> comment, " That mother is a complete flake - just look at her child

> and the way he acts in the supermarket. " or " Look at the way he is

> mean to all of the other kids on the playground " .

>

> On the surface, I have accepted that is not normal. I try

> very hard to cope with it and make the best of a situation. I am

> tired of asking why, but the intense urge to continue asking will not

> go away. I ask myself every day.

>

> That is my brief story.

>

> I am very interested in " mercury autism " because the issue will not

> get out of my head. I will always look for answers.

>

> I hope to get to know some of you in the future with similar stories.

>

> Sincerely,

>

>

[Guest guest]

Can I ask you how many rounds of chelation you have done with your son to get

such great results? We are on round 6 and am totally frustrated. She is very

irratable and I don't see the progress at all. Maybe its too soon.....

[Guest guest]

Hi ,

UFF!! Your story is so sad Well, I guess we all have a similar story

My kid is 4 yo now and he was diagnosed with autism exactly a year ago. We

used to live in Romania and the doctors are not very knowledgeable there... I

mean regarding autism. Also, I couldn't find any help for him... We don't

have there special education. Well, ok, we do, but it's only the name. It's

actually something that it's anything else, but special education.

My kid couldn't do anything... he couldn't speak, he couldn't even memorize

one word, he didn't like to meet people, he didn't even know how to play...

all he could do all day was to jump in bed, scream... It was very sad for me

I used to be so sad I was sick of hearing " you didn't talk to him enough "

or " you didn't play with him enough " ..... sick of it! It still feels bad,

thinking about it now.

My family couldn't help me much, because Denis wouldn't stay with anybody

else other than me... If I wanted to go somewhere, anywhere outside the

house, Denis would have tantrums...

Anyway, this is the short story

I was like you a year ago. I was looking for answers... I couldn't understand

why nobody can help him.

And I found this group, and I learned about chelation And now I have a big

smile on my face Because my kid is not autistic anymore.

He can speak (it's not that I'm having conversations with him, YET! but he

can say words, he can ask for what he wants, he can sing, he can say " I love

you mommy " ), he can draw, he can even play games on the computer. He can read

(some), he can eat by himself, he can dress and undress by himself, he is

completely potty trained (a year ago couldn't even feel when he needed to

go), he plays with kids and he is the smartest kid I know

So, with the help of this group, I started chelation a year ago and... things

worked great for us.

I want to recommend (again) for you to read the ANDY_INDEX file.

/files/ANDY_INDEX

I think it's the best starting point. You will find the answer to a lot of

your questions there. Be careful though, you will need 3-4 brains to store

all that info ) So just take it easy. And please, whatever questions you

have... ask here. I can assure you that there will always be somebody who

will help you.

This is a great group. One of the best

Good luck, !

Valentina

[Guest guest]

In a message dated 30/10/2002 02:03:52 GMT Standard Time, kerielwell@...

writes:

> Can I ask you how many rounds of chelation you have done with your son to

> get

> such great results? We are on round 6 and am totally frustrated. She is

> very

> irratable and I don't see the progress at all. Maybe its too soon.....

>

>

Sorry, not sure if this was directed at me, Sam has so far completed 16

rounds, if he gets yeast problem it CAN look like nothings happened at all.

My first target is 50 rounds and see where we're at

HTH

MAndi in Uk

[Guest guest]

> Can I ask you how many rounds of chelation you have done with your son to get

> such great results? We are on round 6 and am totally frustrated. She is very

> irratable and I don't see the progress at all. Maybe its too soon.....

I'm not sure if you're asking me... I assume it's me

I'm sorry, I don't even know anymore how many... Who counts them anymore?

We chelated for a year. So I think it must have been 30-40 rounds...

At the beginning we had some problems too... I was really scared, because I

wasn't chelating with a doctor... but things worked fine

We didn't have a lot of progress either from the first rounds, but it was always

" something " . And it mattered, no matter how small that " something " was. I think

in time, with more chelation, the body gets rid of more metals and this allows

more progress.

I am sure your daughter will get well too with more chelation, if she is

poisoned. Just don't forget to tell us about it

You know... when I was at the beginning, I had the same feeling hearing people

talking about how much better their kids are... Will my kid ever speak? Will he

ever at least be able to understand what I tell him? Will this work? Will I have

to take care of him forever?

I guess this really worked It is a lot of effort, but it's great to see your

kid back So don't give up

Valentina

[Guest guest]

,Welcome to the group. Several suggestions for starters:Check out the list

FAQs. Consider a DDI (Doctor's Data) hair analysis and apply counting rules.

Find a copy of Dr. Cave's " What Your Doctor May NOT Have Told You

About Childhood Vaccines " . Find a Mercury-Free dentist for yourself and your

children. Get rid of any mercury thermometers...take them to toxic waste

disposal. Reduce or eliminate any exposure to mercury, arsenic, antimony, and

other toxic metals. What vaccines did your son have around the time you

noticed regression? Did you have mercury amalgam (silver) dental fillings in

place or placed while pregnant w/your son? (Not your fault, you trusted your

dentist). Does your son have any mercury amalgam fillings? (Please note that

one cannot safely chelate mercury w/ mercury-containing fillings in place). Did

you have rhogam shots? Rest assured that the fact that you continue to seek

information on behalf of your son illustrates how much you care for him. Autism

does not have to be a lifelong disability. S From: [mailto: Mum231ASD@...]To:

@...: Tue, 29 Oct 2002 17:50:36 ESTSubject: Re:

[ ] New member from ColoradoHi I know where your at, been

there, still there some days:) Piecing together the whys was important for me

too. Found a kind of peace with it all when I felt I had it figured. The

catalogue of events and insults, the part I played (unwittingly) and does help

to get it all in to perspective, then move on and turn that anger and

frustration into something positive, helping the sick child get healthy again.

My sick kid looked the picture of health, a few non invasive tests (urine, stool

and hair) revealed a quite different picture of his functioning. Check out this

groups files section, welcome aboard, you have great company for this

journeyMandi in UKPS Enzymes and Autism is also excellent resource for all

sorts, not just enzymes which BTW were a breakthrough for us & gt; Hello - & gt;

& gt; I am a mother of 3 boys 8, 6, and 5. I am new to this site, and new & gt;

to Colorado after living in California for 12 years. & gt; & gt; My 5 year old,

has been diagnosed with Autism (mild). I am & gt; sure that many of us

have the same traumatic conversations with & gt; experts after experts, doctors

and more doctors, only to be given a & gt; plateful of information: " Behavioral,

ADD, ADHD, Sensory & gt; Integration, Autism, Medication, Occupational Therapy,

Speech, " .... & gt; & gt; The list goes on and on. I have been through so many

doctors and & gt; experts - much of it because I cannot accept any ONE answer.

The & gt; more information I am given, the more questions I have. The more & gt;

questions I have, the more research I do. & gt; & gt; I work full time, and this

issue with my son has consumed me. It's & gt; safe to say that I am obsessed

with finding answers. Why ? & gt; Perhaps I did many of the same things

some of you did. We first & gt; ask: what is wrong? Why is my child not

normal? Why has he been & gt; kicked out of 4 daycare centers and bitten every

child in the class? & gt; Why does he not look others in the eye? Why does he

chew his clothes? & gt; & gt; We then look to our pediatritian. The ball rolls

from there. The & gt; questionnaires follow - the questions that we don't always

remember & gt; exactly, like when your child first lifted his head, first uttered

a & gt; word, first looked you in the eye. & gt; & gt; I have looked for many

answers. Autism does not run in our family, & gt; and I had a very healthy

pregnancy. We have all asked, " what did I & gt; do when I was pregnant? Did I

not cuddle my child enough? Should I & gt; have stayed at home longer instead of

going back to work so soon? " & gt; I have been through an enormous sense of parent

guilt - what did I do & gt; wrong? Has anybody else been there? & gt; & gt; When

was 2 1/2 years, I was so starved for answers. He was a & gt; very happy

pre-schooler, communicating, laughing, singing. Then we & gt; moved. Then it

started. The speech stopped, the smiles stopped, the & gt; agressive behavior

began, and my depression set in. The last 2 years & gt; of my life have been a

difficult journey. I have matured much since, & gt; and have a much greater

understanding of what Autism is, what SID is, & gt; all those initials that most

of us on this site know what they & gt; actually stand for. I KIND OF know what

it means when my child wears & gt; weights on his feet, why he jumps up and down

constantly, why my & gt; child throws a level 10 tantrum, why he cries for

something, and why & gt; he is so mezmorized at silly things at times. WHY? & gt;

& gt; is now turning 5 and is in a special program for Autism. He & gt;

sees an Occupational Therapist, a Speech Therapist, and a Behavior & gt;

Therapist. I have spread the issue around in a 3-person triangle & gt; with

hopes of my son improving. I spend my time learning about why & gt; he does the

things he does. Why he thinks the way he thinks. Why he & gt; cries when he

does. I want to understand him so badly, that all of & gt; the experts in the

world cannot tell me what is wrong with him. Do & gt; our new aquaintances,

friends and neighbors all say, " He'll grow out & gt; of it, he's just a kid, he's

just a boy " ?? Or do strangers & gt; comment, " That mother is a complete flake -

just look at her child & gt; and the way he acts in the supermarket. " or " Look

at the way he is & gt; mean to all of the other kids on the playground " . & gt; & gt;

On the surface, I have accepted that is not normal. I try & gt; very

hard to cope with it and make the best of a situation. I am & gt; tired of

asking why, but the intense urge to continue asking will not & gt; go away. I

ask myself every day. & gt; & gt; That is my brief story. & gt; & gt; I am very

interested in " mercury autism " because the issue will not & gt; get out of my

head. I will always look for answers. & gt; & gt; I hope to get to know some of

you in the future with similar stories. & gt; & gt; Sincerely, & gt; & gt;

[Guest guest]

Hi everyone. SO glad to have found this support group. I have been

to 6 different docs (including an Endocrinologist). Even tho I am

still leaning toward Polymylagia Rheumatica... they all seem to agree

it is RA. I am now in the process of researching Rheumatologists via

the internet to find one. In the meantime I am living with the daily

morning debilitating pain, fatigue and all day stiffness and soreness.

I live in the Castle Rock area, but don't mind driving to find a good

doctor who isn't an alarmist and won't " test " me to death. Think I

have had every blood test (at least twice) in the last month.

I'm looking forward to lurking here for awhile.... reading back posts

and settling in.

SHARON

[Guest guest]

Sharon,

Welcome. I live in Denver and I am really happy w/ my

rheumatologists. When I first moved here from Los Angeles, I saw Dr.

Charney at Denver Arthritis Clinic. He was AWEFUL!! He said

that all of my problems were in my head. Even though I had my

rheumatology records from LA stating that I have RA and fibromyalgia.

I don't know how one can fake lab tests!?!? I have heard that there

are other rheumatologists in the practice that are good...but after

being told that all of my pain is in my head; I searched for another

rheumy who would treat me. My PCP recommended Dr. Kathleen Srock, out

of Rose Medical Center in Denver. She was great. She agreed that I

had some form of rheumatism, more then likely RA. She has a great

bedside manner. I had to quit seeing her due to insurance issues. I

am now at Denver Health and I am currently seeing Dr. Rose.

She is the best rheumy that I have found since I moved here. She did

the usual labs and xrays. She agreed w/ me that I have RA/fibro and

started me on a much more aggressive form of treatment. Her and

Srock are really good about spending time w/ you and returning your

phone calls. I would highly recommend them both. I think Dr. Rose is

in her fellowship and isn't going to be at Denver Health much longer

(IDK; but I hope she stays).

Hope I could be of some assistance. Let me know if you have any

further questions...again welcome. This is an amazing support group

and I am soo happy to here.

>

> Hi everyone. SO glad to have found this support group. I have

been

> to 6 different docs (including an Endocrinologist). Even tho I am

> still leaning toward Polymylagia Rheumatica... they all seem to

agree

> it is RA. I am now in the process of researching Rheumatologists

via

> the internet to find one. In the meantime I am living with the

daily

> morning debilitating pain, fatigue and all day stiffness and

soreness.

>

> I live in the Castle Rock area, but don't mind driving to find a

good

> doctor who isn't an alarmist and won't " test " me to death. Think I

> have had every blood test (at least twice) in the last month.

>

> I'm looking forward to lurking here for awhile.... reading back

posts

> and settling in.

>

> SHARON

>

[Guest guest]

welcome sharon! this ra group is awesome, i have been a member for a couple of

months or so & it has helped me alot.. im 38 & have severe ra,osteo,neuropathy &

depression. it sux! i know what it feels like to have pain & be sore & stiff all

the time. tired always but i have an 11yr old daughter so i try to keep up if

possible!! is the weather cold where you live? i live in corpus christi,tx.so

the weather here kinda fluctuates. sometimes its hot,then cold,windy & wet. my ra

is worse when it rains!! well i hope you find a good rheummy & you get the help

you need cuz there is no need for you to suffer,sharon. god bless,melyndagamez

5/17/08 5:10p.m.central

[ ] new member from Colorado

Hi everyone.  SO glad to have found this support group.  I have been

to 6 different docs (including an Endocrinologist).  Even tho I am

still leaning toward Polymylagia Rheumatica... they all seem to agree

it is RA.  I am now in the process of researching Rheumatologists via

the internet to find one.  In the meantime I am living with the daily

morning debilitating pain, fatigue and all day stiffness and soreness. 

I live in the Castle Rock area, but don't mind driving to find a good

doctor who isn't an alarmist and won't " test " me to death.  Think I

have had every blood test (at least twice) in the last month. 

I'm looking forward to lurking here for awhile.... reading back posts

and settling in. 

SHARON

------------------------------------

[Guest guest]

Sharon,

Why do you suspect polymyalgia rheumatica and your physicians RA?

Not an MD

> [ ] new member from Colorado

>

> Hi everyone. SO glad to have found this support group. I have been

> to 6 different docs (including an Endocrinologist). Even tho I am

> still leaning toward Polymylagia Rheumatica... they all seem to agree

> it is RA. I am now in the process of researching Rheumatologists via

> the internet to find one. In the meantime I am living with the daily

> morning debilitating pain, fatigue and all day stiffness and soreness.

>

> I live in the Castle Rock area, but don't mind driving to find a good

> doctor who isn't an alarmist and won't " test " me to death. Think I

> have had every blood test (at least twice) in the last month.

>

> I'm looking forward to lurking here for awhile.... reading back posts

> and settling in.

>

> SHARON

[Guest guest]

--- In , " " <Matsumura_Clan@...>

wrote:

>

> Sharon,

>

> Why do you suspect polymyalgia rheumatica and your physicians RA?

>

>

>

> Not an MD

=====================

Probably just wishing thinking on my part <g>. HOWEVER, here is why

I am leaning in that direction.

The way it came on, literally overnight. Pain jumps around. I never

know what new pain I will wake up to (muscles and joints). The pain

from the day before is totally gone. Seems to be focused on my

shoulder/upper arm area, although wrist or finger and knee are common

some days too. This morning my ankle and back are stiff and sore,

which has been been a problem before.

My RA is 84. SEDS is normal. AND... it came on the tail end of a

upper respitory viral type infection.

Through the day....once I am up and moving, the pain lessens

(although it is never totally gone from whatever area it decides to

hit that day). In the evening and especially through the night....

the pain is debilitating.

Ibruprophen doesn't touch the pain. One doc put me on a 3 week

regime of anti-inflamatories... which don't seem to be helping. ER

gave me a 30 day supply of Codine... which does take the edge off the

pain...... but I only take it when I absolutely have to. I don't

want to run out before I can get into see a Rheumatologist.

The PCP's see that RA reading and they can't seem to focus on

anything else.

Monday morning I will be on the phone making a couple of appointments

with Rheumatologists. Figure I will check out a couple and see who I

feel most comfortable with.

SHARON

============

[Guest guest]

Hi Sharon!

I'm definitely not an expert on the different types of arthritis as they are so

many. I'm not sure of all of your symptoms but did they discuss looking at

Fibromyalgia as well?

snap_colorado <sd197@...> wrote:

>

> Sharon,

>

> Why do you suspect polymyalgia rheumatica and your physicians RA?

>

>

>

> Not an MD

=====================

Probably just wishing thinking on my part <g>. HOWEVER, here is why

I am leaning in that direction.

The way it came on, literally overnight. Pain jumps around. I never

know what new pain I will wake up to (muscles and joints). The pain

from the day before is totally gone. Seems to be focused on my

shoulder/upper arm area, although wrist or finger and knee are common

some days too. This morning my ankle and back are stiff and sore,

which has been been a problem before.

My RA is 84. SEDS is normal. AND... it came on the tail end of a

upper respitory viral type infection.

Through the day....once I am up and moving, the pain lessens

(although it is never totally gone from whatever area it decides to

hit that day). In the evening and especially through the night....

the pain is debilitating.

Ibruprophen doesn't touch the pain. One doc put me on a 3 week

regime of anti-inflamatories... which don't seem to be helping. ER

gave me a 30 day supply of Codine... which does take the edge off the

pain...... but I only take it when I absolutely have to. I don't

want to run out before I can get into see a Rheumatologist.

The PCP's see that RA reading and they can't seem to focus on

anything else.

Monday morning I will be on the phone making a couple of appointments

with Rheumatologists. Figure I will check out a couple and see who I

feel most comfortable with.

SHARON

============

[Guest guest]

When my RA started, the pain jumped around, too.

Sue

On Sunday, May 18, 2008, at 01:21 PM, snap_colorado wrote:

>

> The way it came on, literally overnight. Pain jumps around. I never

> know what new pain I will wake up to (muscles and joints).

>

[Guest guest]

Sharon,

I hope you can get an appointment w/ a rheumy soon. From my

experience...it took me about 2 months for a new patient. Once I was

a patient...I could get an appointment tomorrow. I keep a " pain "

journal. I note what locations hurt, note when I have good days, when

I have bad days. Some days, it's just my fingers that hurt...other

days, it's all the joints in my extremeites. It helps when I see my

rheumy...it helps gauge my progress when I started a new medication

etc. I have been having more " bad " days then " good " days over the

past few months, so I am going to see if we can change my medication

or doses.

Let me know what rheumy you do deciede to go too. Best of luck to

you.

> >

> > The way it came on, literally overnight. Pain jumps around. I

never

> > know what new pain I will wake up to (muscles and joints).

> >

>

[Guest guest]

hi sharon i just read your post about polymyalgia. the way your describing your

pain moving from side to side & never know where it will be next. has your pcp

ever checked you for neuropathy? it has to do with you nerves & muscles+

joints.... i was having the same issues & finally my pcp & rheummy found out i

have neuropathy.. i hope the drs. can find out whats wrong with you soon!! god

bless.melyndagamez 5/19/08 11:20p.m.central

[ ] Re: new member from Colorado

--- In , " " <Matsumura_Clan@...>

wrote:

>

> Sharon,

>

> Why do you suspect polymyalgia rheumatica and your physicians RA?

>

>

>

> Not an MD

=====================

Probably just wishing thinking on my part <g>.  HOWEVER, here is why

I am leaning in that direction.

The way it came on, literally overnight.  Pain jumps around.  I never

know what new pain I will wake up to (muscles and joints).  The pain

from the day before is totally gone.  Seems to be focused on my

shoulder/upper arm area, although wrist or finger and knee are common

some days too.    This morning my ankle and back are stiff and sore,

which has been been a problem before. 

My RA is 84.  SEDS is normal.  AND... it came on the tail end of a

upper respitory viral type infection. 

Through the day.....once I am up and moving, the pain lessens

(although it is never totally gone from whatever area it decides to

hit that day).  In the evening and especially through the night....

the pain is debilitating.

Ibruprophen doesn't touch the pain.  One doc put me on a 3 week

regime of anti-inflamatories... which don't seem to be helping.  ER

gave me a 30 day supply of Codine... which does take the edge off the

pain...... but I only take it when I absolutely have to.  I don't

want to run out before I can get into see a Rheumatologist.

The PCP's see that RA reading and they can't seem to focus on

anything else. 

Monday morning I will be on the phone making a couple of appointments

with Rheumatologists.  Figure I will check out a couple and see who I

feel most comfortable with.

SHARON

 

============

------------------------------------

[Guest guest]

Good Morning everyone--

I found that if you print a few of these questionairs and then take them with

you to the Reumy, it will help them and you gage your " progess " , plus it will

give you visual proof of whjat is going on.

The Health Assessment Questionaire, by Standford University of Reumatology.

It really is quite beneficial.

<man_u8@...> wrote:

Sharon,

I hope you can get an appointment w/ a rheumy soon. From my

experience...it took me about 2 months for a new patient. Once I was

a patient...I could get an appointment tomorrow. I keep a " pain "

journal. I note what locations hurt, note when I have good days, when

I have bad days. Some days, it's just my fingers that hurt...other

days, it's all the joints in my extremeites. It helps when I see my

rheumy...it helps gauge my progress when I started a new medication

etc. I have been having more " bad " days then " good " days over the

past few months, so I am going to see if we can change my medication

or doses.

Let me know what rheumy you do deciede to go too. Best of luck to

you.

> >

> > The way it came on, literally overnight. Pain jumps around. I

never

> > know what new pain I will wake up to (muscles and joints).

> >

>

[Guest guest]

welcome karen to the ra group! i hope you find it helpful as i have.....

thank-you for the info. on the questionaire.god bless,melyndagamez 5/20/08

7:40a.m.central

Re: [ ] Re: new member from Colorado

Good Morning everyone--

 

  I found that if you print a few of these questionairs and then take them with

you to the Reumy, it will help them and you gage your " progess " , plus it will

give you visual proof of whjat is going on.

 

  The Health Assessment Questionaire, by Standford University of Reumatology.

 

  It really is quite beneficial.

<man_u8@...> wrote:

          Sharon,

I hope you can get an appointment w/ a rheumy soon. From my

experience...it took me about 2 months for a new patient. Once I was

a patient...I could get an appointment tomorrow. I keep a " pain "

journal. I note what locations hurt, note when I have good days, when

I have bad days. Some days, it's just my fingers that hurt...other

days, it's all the joints in my extremeites. It helps when I see my

rheumy...it helps gauge my progress when I started a new medication

etc. I have been having more " bad " days then " good " days over the

past few months, so I am going to see if we can change my medication

or doses.

Let me know what rheumy you do deciede to go too. Best of luck to

you.

> >

> > The way it came on, literally overnight. Pain jumps around. I

never

> > know what new pain I will wake up to (muscles and joints).

> >

>

                         

     

[Guest guest]

Thank you Melynda.

I won't see the Reumy for the 1st time until June 11. My GP says that all the

RA tests are negative, BUT 3 sisters, my mother and grandmother had RA. For 3

weeks I have suffered with swollen, tingling and painful joints in my hands. Now

within the last 2 days my knees are hurting. But I have learned so much in this

group. The tests aren't always right the first time. So we'll see what comes on

June 11th.

Thank you everyone for all the great info.

Melynda Gamez <melyndagamez@...> wrote:

welcome karen to the ra group! i hope you find it helpful as i

have..... thank-you for the info. on the questionaire.god bless,melyndagamez

5/20/08 7:40a.m.central

Re: [ ] Re: new member from Colorado

Good Morning everyone--

I found that if you print a few of these questionairs and then take them with

you to the Reumy, it will help them and you gage your " progess " , plus it will

give you visual proof of whjat is going on.

The Health Assessment Questionaire, by Standford University of Reumatology.

It really is quite beneficial.

<man_u8@...> wrote:

Sharon,

I hope you can get an appointment w/ a rheumy soon. From my

experience...it took me about 2 months for a new patient. Once I was

a patient...I could get an appointment tomorrow. I keep a " pain "

journal. I note what locations hurt, note when I have good days, when

I have bad days. Some days, it's just my fingers that hurt...other

days, it's all the joints in my extremeites. It helps when I see my

rheumy...it helps gauge my progress when I started a new medication

etc. I have been having more " bad " days then " good " days over the

past few months, so I am going to see if we can change my medication

or doses.

Let me know what rheumy you do deciede to go too. Best of luck to

you.

> >

> > The way it came on, literally overnight. Pain jumps around. I

never

> > know what new pain I will wake up to (muscles and joints).

> >

>

[Guest guest]

Sharon, I'm coming to this discussion very late, hopefully by now you

have answers. I have polymyalgia rheumatica, and yours certainly

doesn't sound like mine, except for the sudden onset. Once mine

started, the pain did not jump around at all. It started with my

neck, then my shoulders, then my hips. Never any finger, hand, or

foot involvement, no small joints at all. Just shoulders, hips and

back that were like muscle contractions that simply wouldn't let go!

My SED rate jumped almost overnight from normal to 93, but not until

I'd had the pain for a couple of months. To diagnose PMR, after

ruling out almost everything else, my rheumy put me on 20 mg of

prednisone a day. If the pain went away, the it was likely PMR. Mine

did. But taking that much prednisone for a couple of years isn't a

good idea, so I started at 10 mg and worked it down. It's been a long

road, but at least no joint damage. There's been plenty of other

damage from the prednisone, though, so don't think that PMR is

something that will go away quickly without any long term issues!

Good luck, hope you get your answers soon.

On Sun, May 18, 2008 at 10:21 AM, snap_colorado <sd197@...> wrote:

>

>

>>

>> Sharon,

>>

>> Why do you suspect polymyalgia rheumatica and your physicians RA?

>>

>>

>>

>> Not an MD

> =====================

> Probably just wishing thinking on my part <g>. HOWEVER, here is why

> I am leaning in that direction.

>

> The way it came on, literally overnight. Pain jumps around. I never

> know what new pain I will wake up to (muscles and joints). The pain

> from the day before is totally gone. Seems to be focused on my

> shoulder/upper arm area, although wrist or finger and knee are common

> some days too. This morning my ankle and back are stiff and sore,

> which has been been a problem before.

>

> My RA is 84. SEDS is normal. AND... it came on the tail end of a

> upper respitory viral type infection.

>

> Through the day....once I am up and moving, the pain lessens

> (although it is never totally gone from whatever area it decides to

> hit that day). In the evening and especially through the night....

> the pain is debilitating.

>

> Ibruprophen doesn't touch the pain. One doc put me on a 3 week

> regime of anti-inflamatories... which don't seem to be helping. ER

> gave me a 30 day supply of Codine... which does take the edge off the

> pain...... but I only take it when I absolutely have to. I don't

> want to run out before I can get into see a Rheumatologist.

>

> The PCP's see that RA reading and they can't seem to focus on

> anything else.

>

> Monday morning I will be on the phone making a couple of appointments

> with Rheumatologists. Figure I will check out a couple and see who I

> feel most comfortable with.

>

> SHARON

>

--

South Pasadena, CA / Lilydale, MN

You can see my galleries at http://www.pbase.com/arenared986

M. Schulz - " All you need is love. But a little chocolate now

and then doesn't hurt. "

[Guest guest]

Hi :

& nbsp;

& nbsp; & nbsp; & nbsp; & nbsp; I hope you are feeling better since the last time we

talked. & nbsp; Have you started any craft classes yet? & nbsp; I have been without

my computer for 3 1/2 weeks, and yes, I & nbsp;was going crazy without

it!!!! & nbsp; I just got it back today....I have over 1,000 e-mails!!! Yikes, I

am trying to catch up on the R.A. site, and see how everyone has been. & nbsp; I

am still having bad days with my feet and ankles, but some relief yesterday and

today. & nbsp; I see my Rheumy next week. & nbsp; I am going to try again!!! getting

off the pred. & nbsp; I hope it works this time..... & nbsp; & nbsp; 5 1/2 years is a

long time to be on it, but it sure does work good for my R.A. & nbsp; I just hate

the weight, etc. & nbsp; I want to see how my feet really are without it. & nbsp; It

is a wonder drug for us, but I would love to look like myself for a

change. & nbsp; I will see how it all goes.

& nbsp; & nbsp; & nbsp; & nbsp; Hope you are doing something good for yourself, and

pray you have pain free days.

I care, & nbsp; & nbsp; & nbsp; & nbsp;

Barbara

--- In @gro ups.com,

" " & lt;Matsumura_Clan@ ... & gt;

wrote:

& gt;

& gt; Sharon,

& gt;

& gt; Why do you suspect polymyalgia rheumatica and your physicians RA?

& gt;

& gt;

& gt;

& gt; Not an MD

============ =========

Probably just wishing thinking on my part & lt;g & gt;. HOWEVER, here is why

I am leaning in that direction.

The way it came on, literally overnight. Pain jumps around. I never

know what new pain I will wake up to (muscles and joints). The pain

from the day before is totally gone. Seems to be focused on my

shoulder/upper arm area, although wrist or finger and knee are common

some days too. This morning my ankle and back are stiff and sore,

which has been been a problem before.

My RA is 84. SEDS is normal. AND... it came on the tail end of a

upper respitory viral type infection.

Through the day....once I am up and moving, the pain lessens

(although it is never totally gone from whatever area it decides to

hit that day). In the evening and especially through the night....

the pain is debilitating.

Ibruprophen doesn't touch the pain. One doc put me on a 3 week

regime of anti-inflamatories. .. which don't seem to be helping. ER

gave me a 30 day supply of Codine... which does take the edge off the

pain...... but I only take it when I absolutely have to. I don't

want to run out before I can get into see a Rheumatologist.

The PCP's see that RA reading and they can't seem to focus on

anything else.

Monday morning I will be on the phone making a couple of appointments

with Rheumatologists. Figure I will check out a couple and see who I

feel most comfortable with.

SHARON

============

[Guest guest]

Good to see you back Barbara!!! I miss my computer too when I am without it!

I've picked out a couple of craft classes and a writing class. I just have to

get rid of my upper respiratory infection first:) I had to go to the doctor on

Friday, I am on an antibiotic once again! Another upper respiratory infection.

I think this is the fifth or sixth time since Sept. that I am on an antibiotic.

So that means, stopping the Sulfasalazine again!! Luckily, I go to the

rheumatologist next week too! My 4 week flare where I was pretty much bedbound

seems to have improved somewhat..so now she won't get to see me in a

flare...unless it worses before Monday which is possible as we all know! I am

glad you had a couple of days of relief with the feet and ankle pain! So far,

that is the most challenging, since we need them to walk!!! Good luck at the

Rheumatologist visit when you go! I hope that they can find a medication to

replace the prednisone once you get weaned off:)

Barbara Creedon <bcreedon@...> wrote: Hi

:

& nbsp;

& nbsp; & nbsp; & nbsp; & nbsp; I hope you are feeling better since the last time we

talked. & nbsp; Have you started any craft classes yet? & nbsp; I have been without

my computer for 3 1/2 weeks, and yes, I & nbsp;was going crazy without

it!!!! & nbsp; I just got it back today....I have over 1,000 e-mails!!! Yikes, I

am trying to catch up on the R.A. site, and see how everyone has been. & nbsp; I

am still having bad days with my feet and ankles, but some relief yesterday and

today. & nbsp; I see my Rheumy next week. & nbsp; I am going to try again!!! getting

off the pred. & nbsp; I hope it works this time..... & nbsp; & nbsp; 5 1/2 years is a

long time to be on it, but it sure does work good for my R.A. & nbsp; I just hate

the weight, etc. & nbsp; I want to see how my feet really are without it. & nbsp; It

is a wonder drug for us, but I would love to look like myself for a

change. & nbsp; I will see how it all goes.

& nbsp; & nbsp; & nbsp; & nbsp; Hope you are doing something good for yourself, and

pray you have pain free days.

I care, & nbsp; & nbsp; & nbsp; & nbsp;

Barbara

& gt;

& gt; Sharon,

& gt;

& gt; Why do you suspect polymyalgia rheumatica and your physicians RA?

& gt;

& gt;

& gt;

& gt; Not an MD

============ =========

Probably just wishing thinking on my part & lt;g & gt;. HOWEVER, here is why

I am leaning in that direction.

The way it came on, literally overnight. Pain jumps around. I never

know what new pain I will wake up to (muscles and joints). The pain

from the day before is totally gone. Seems to be focused on my

shoulder/upper arm area, although wrist or finger and knee are common

some days too. This morning my ankle and back are stiff and sore,

which has been been a problem before.

My RA is 84. SEDS is normal. AND... it came on the tail end of a

upper respitory viral type infection.

Through the day....once I am up and moving, the pain lessens

(although it is never totally gone from whatever area it decides to

hit that day). In the evening and especially through the night....

the pain is debilitating.

Ibruprophen doesn't touch the pain. One doc put me on a 3 week

regime of anti-inflamatories. .. which don't seem to be helping. ER

gave me a 30 day supply of Codine... which does take the edge off the

pain...... but I only take it when I absolutely have to. I don't

want to run out before I can get into see a Rheumatologist.

The PCP's see that RA reading and they can't seem to focus on

anything else.

Monday morning I will be on the phone making a couple of appointments

with Rheumatologists. Figure I will check out a couple and see who I

feel most comfortable with.

SHARON

============

[Guest guest]

to barbara & stephanie, im GLAD THE TWO OF YOU R FEELING BETTER!! heres to PAIN

FREE DAYS & THE GREAT support of this RA GROUP!! god bless,melyndagamez 5/28/08

3:15p.m.central

Re: [ ] Re: new member from Colorado

Good to see you back Barbara!!! I miss my computer too when I am without it!

I've picked out a couple of craft classes and a writing class. I just have to

get rid of my upper respiratory infection first:) I had to go to the doctor on

Friday, I am on an antibiotic once again! Another upper respiratory infection. 

I think this is the fifth or sixth time since Sept. that I am on an antibiotic. 

So that means, stopping the Sulfasalazine again!! Luckily, I go to the

rheumatologist next week too! My 4 week flare where I was pretty much bedbound

seems to have improved somewhat..so now she won't get to see me in a

flare...unless it worses before Monday which is possible as we all know! I am

glad you had a couple of days of relief with the feet and ankle pain! So far,

that is the most challenging, since we need them to walk!!! Good luck at the

Rheumatologist visit when you go! I hope that they can find a medication to

replace the prednisone once you get weaned

off:)

Barbara Creedon <bcreedon@...> wrote:                            Hi

:

& nbsp;

& nbsp; & nbsp; & nbsp; & nbsp; I hope you are feeling better since the last time we

talked. & nbsp; Have you started any craft classes yet? & nbsp; I have been without

my computer for 3 1/2 weeks, and yes, I & nbsp;was going crazy without

it!!!! & nbsp; I just got it back today....I have over 1,000 e-mails!!! Yikes, I

am trying to catch up on the R.A. site, and see how everyone has been. & nbsp; I

am still having bad days with my feet and ankles, but some relief yesterday and

today. & nbsp; I see my Rheumy next week. & nbsp; I am going to try again!!! getting

off the pred. & nbsp; I hope it works this time..... & nbsp; & nbsp; 5 1/2 years is a

long time to be on it, but it sure does work good for my R.A. & nbsp; I just hate

the weight, etc. & nbsp; I want to see how my feet really are without it. & nbsp; It

is a wonder drug for us, but I would love to look like myself for a

change. & nbsp; I will see how it all goes.

& nbsp; & nbsp; & nbsp; & nbsp; Hope you are doing something good for yourself, and

pray you have pain free days.

I care, & nbsp; & nbsp; & nbsp; & nbsp;

Barbara

--- In @gro ups.com,

" " & lt;Matsumura_Clan@ ... & gt;

wrote:

& gt;

& gt; Sharon,

& gt;

& gt; Why do you suspect polymyalgia rheumatica and your physicians RA?

& gt;

& gt;

& gt;

& gt; Not an MD

============ =========

Probably just wishing thinking on my part & lt;g & gt;. HOWEVER, here is why

I am leaning in that direction.

The way it came on, literally overnight. Pain jumps around. I never

know what new pain I will wake up to (muscles and joints). The pain

from the day before is totally gone. Seems to be focused on my

shoulder/upper arm area, although wrist or finger and knee are common

some days too. This morning my ankle and back are stiff and sore,

which has been been a problem before.

My RA is 84. SEDS is normal. AND... it came on the tail end of a

upper respitory viral type infection.

Through the day....once I am up and moving, the pain lessens

(although it is never totally gone from whatever area it decides to

hit that day). In the evening and especially through the night....

the pain is debilitating.

Ibruprophen doesn't touch the pain. One doc put me on a 3 week

regime of anti-inflamatories. .. which don't seem to be helping. ER

gave me a 30 day supply of Codine... which does take the edge off the

pain...... but I only take it when I absolutely have to. I don't

want to run out before I can get into see a Rheumatologist.

The PCP's see that RA reading and they can't seem to focus on

anything else.

Monday morning I will be on the phone making a couple of appointments

with Rheumatologists. Figure I will check out a couple and see who I

feel most comfortable with..

SHARON

============

[Guest guest]

Hi Melynda:

& nbsp;

So glad to hear from you again, as you are in my thoughts so often. & nbsp; How

are things going for you right now? & nbsp; How is your pain level doing? & nbsp; I

know you suffer from many things, so I sure pray things are getting a little

better for you. & nbsp; Some days instead of one day at a time, it can be one hour

at a time. & nbsp; These diseases definately have a mind of their own. & nbsp;

Have & nbsp; you seen your Rheumy lately? & nbsp; If so, how did it go? & nbsp; I

thank God everyday for my Rheumy.

What would any of us do without them? & nbsp; I am going to try next week getting

of the Pred.

I have not been able to do that for 5 1/2 years. & nbsp; The longest I went was 3

weeks!! & nbsp; Do you take it everyday? & nbsp; What is the longest time you have

gone without it? & nbsp; I just hate the way I look and feel right now. & nbsp; I

went out today to get some jersey's, and a bathing suit. & nbsp; I got one jersey,

and a bath. suit. & nbsp; I was so frustrated when I left the store. & nbsp; Plus I

ran some other errands to the P.O., stood in line for 20 min., then tried on the

stuff in the store & nbsp;I wanted to buy, & nbsp; went to the food store to get 4

items, walked from one side of the store to the other, to the check out, and

hobbled to my car. & nbsp; My feet were so bad I wanted to scream!!!! & nbsp; When I

got home I couldn't stand the pain, and my husband had to help me into

the house, etc. & nbsp; Had to get 2 pain pills, and sit in my chair with my feet

up. & nbsp; So much for my afternoon out. It just felt good to get out and run

some errands, but what a price to pay.

I know you know what that does to my mind...... most days I am in the house, and

that gets to me.... I know it is so hard for you most days. & nbsp; You have a

young family, and all these disease's make things so hard for you. & nbsp; Like

you, I pray to God for more pain free days, and also to try to make the best of

what has been delt to us. & nbsp; I thank God also for this wonderful site with

all these caring and loving people. & nbsp; It is good to know they really

understand what we are dealing with, and all their compassion, makes a big diff.

in our lives. & nbsp; I know my friends have no idea what living with this disease

is like. & nbsp; Do you find this & nbsp;with your friends also? & nbsp; I know

you & nbsp; have more things to deal with than me, but I know you understand what

it is really like.

I pray you will have better days, pain free, and remember, I care about you

Myleinda. & nbsp; You are a special girl. & nbsp; God love you.

Love,

Barbara & nbsp;

--- In @gro

ups.com, " " & amp;lt;Matsumura_ Clan@ ... & amp;gt;

wrote:

& amp;gt;

& amp;gt; Sharon,

& amp;gt;

& amp;gt; Why do you suspect polymyalgia rheumatica and your physicians RA?

& amp;gt;

& amp;gt;

& amp;gt;

& amp;gt; Not an MD

============ =========

Probably just wishing thinking on my part & amp;lt;g & amp;gt;. HOWEVER, here is

why

I am leaning in that direction.

The way it came on, literally overnight. Pain jumps around. I never

know what new pain I will wake up to (muscles and joints). The pain

from the day before is totally gone. Seems to be focused on my

shoulder/upper arm area, although wrist or finger and knee are common

some days too. This morning my ankle and back are stiff and sore,

which has been been a problem before.

My RA is 84. SEDS is normal. AND... it came on the tail end of a

upper respitory viral type infection.

Through the day....once I am up and moving, the pain lessens

(although it is never totally gone from whatever area it decides to

hit that day). In the evening and especially through the night....

the pain is debilitating.

Ibruprophen doesn't touch the pain. One doc put me on a 3 week

regime of anti-inflamatories. .. which don't seem to be helping. ER

gave me a 30 day supply of Codine... which does take the edge off the

pain...... but I only take it when I absolutely have to. I don't

want to run out before I can get into see a Rheumatologist.

The PCP's see that RA reading and they can't seem to focus on

anything else.

Monday morning I will be on the phone making a couple of appointments

with Rheumatologists. Figure I will check out a couple and see who I

feel most comfortable with..

SHARON

============

[Guest guest]

Thanks , good to be back, and hearing from you.I was happy to read you

will take that writing class, plus maybe do some craft classes.You will meet

lots of new people, and make friends while doing so.I think you will enjoy doing

new things, and maybe find some craft that you really enjoy.I am so sorry to

hear you have had more URI's since we last talked. & nbsp; You must feel crappy

with that going on. I went through that when I lived on Cape Cod, for over 3

years.Back to back each time.I had never had that many before in my entire

life.I wasn't diagnosed with r.a. then.That was what weakened my immune system,

plus, I had pneumonia in between.I hope you are starting to feel a bit better

today.What does your Rheumy say about all this?Do you also have asthma?I think

upper resp. stuff is hard to get rid of.I also agree with you about pain in the

feet and ankles.Some days I can't even stand on them when I get up in the

morning.I am so afraid of

falling as they are very unreliable.Do yours do the same thing?Are you having

good weather now?It is so hot, 94,humid here.I hate to see the summer months

here in Florida.They are really hard for me.

I noticed when I got your letter today that my letter had all those crazy

symbals in it.How did I get them, and how do I get rid of them?They weren't

visible in the letter I e-mailed you.

It is very strange to me.I look forward to talking with you again.I am sending

hugs to you, and a prayer that you will be feeling much better very soon.I also

wish you pain free days.

Hugs,

Barbara

--- In @gro

ups.com, " " & amp;lt;Matsumura_ Clan@ ... & amp;gt;

wrote:

& amp;gt;

& amp;gt; Sharon,

& amp;gt;

& amp;gt; Why do you suspect polymyalgia rheumatica and your physicians RA?

& amp;gt;

& amp;gt;

& amp;gt;

& amp;gt; Not an MD

============ =========

Probably just wishing thinking on my part & amp;lt;g & amp;gt;. HOWEVER, here is

why

I am leaning in that direction.

The way it came on, literally overnight. Pain jumps around. I never

know what new pain I will wake up to (muscles and joints). The pain

from the day before is totally gone. Seems to be focused on my

shoulder/upper arm area, although wrist or finger and knee are common

some days too. This morning my ankle and back are stiff and sore,

which has been been a problem before.

My RA is 84. SEDS is normal. AND... it came on the tail end of a

upper respitory viral type infection.

Through the day....once I am up and moving, the pain lessens

(although it is never totally gone from whatever area it decides to

hit that day). In the evening and especially through the night....

the pain is debilitating.

Ibruprophen doesn't touch the pain. One doc put me on a 3 week

regime of anti-inflamatories. .. which don't seem to be helping. ER

gave me a 30 day supply of Codine... which does take the edge off the

pain...... but I only take it when I absolutely have to. I don't

want to run out before I can get into see a Rheumatologist.

The PCP's see that RA reading and they can't seem to focus on

anything else.

Monday morning I will be on the phone making a couple of appointments

with Rheumatologists. Figure I will check out a couple and see who I

feel most comfortable with.

SHARON

============

[Guest guest]

hello barbara, im SO GLAD TO HEAR FROM YOU AS WELL!! you will always have a

friend in me.. right now things are going o.k. but about a month or so i was in

the hospital very sick!! the dr thought i was having a mild stroke or heart

attack,thank-goodness it was neither. as for my pain level it has been BAD & i

have been having major flareups practically everyday. it makes me sad. i saw my

rheummy 3weeks ago & she said my inflammation level was very high & vitamin d is

low. she also did a bone density test on me. results: my ra & osteoporosis are

getting worse in my spine esp.my lower back. it hurts so bad barbara!! the dr.

upped my prednisone when i was sick in the hosp. here i am trying to get off of

this drug because its KILLING ME LITERALLY & SHE RAISES THE MG. barbara i have

been trying to get off of the pred. for some time now but i cant, at least im

down to 4 mg. a day. i still feel somewhat of a difference from 10mg.to

5mg.to4mg. its a very

difficult process. when i was younger i tried to get off for two weeks &

barbara i was BEDRIDDEN & NEEDED total care,it was aweful!!!! im like you,my

friend i HATE the way i FEEL & LOOK(weight gain).believe it or not, i do have a

friend(patty) shes like a sister to me & she feels everything i feel & suffer

from because she to has ra in her hands & back.. i to was like you going from

one place to another to shop & pay bills. i get so tired,however i enjoy it

because im out of the house but then i pay for it later let me tell you!! thanks

for PRAYING FOR ME,BARBARA IT MEANS SO MUCH TO ACTUALLY KNOW SOMEONE CARES other

than your family & sometimes not even your family.... my prayers are so with

you,my friend! god bless,melyndagamez 5/28/08 10p..m.central p.s. what do these

letters stand for nbsp;curious!!

Re: [ ] Re: new member from Colorado

Hi Melynda:

& nbsp;

So glad to hear from you again, as you are in my thoughts so often. & nbsp; How

are things going for you right now? & nbsp; How is your pain level doing? & nbsp; I

know you suffer from many things, so I sure pray things are getting a little

better for you. & nbsp; Some days instead of one day at a time, it can be one hour

at a time. & nbsp; These diseases definately have a mind of their own. & nbsp;

Have & nbsp; you seen your Rheumy lately? & nbsp; If so, how did it go? & nbsp; I

thank God everyday for my Rheumy.

What would any of us do without them? & nbsp; I am going to try next week getting

of the Pred.

I have not been able to do that for 5 1/2 years. & nbsp; The longest I went was 3

weeks!! & nbsp; Do you take it everyday? & nbsp; What is the longest time you have

gone without it? & nbsp; I just hate the way I look and feel right now. & nbsp; I

went out today to get some jersey's, and a bathing suit. & nbsp; I got one jersey,

and a bath. suit. & nbsp; I was so frustrated when I left the store. & nbsp; Plus I

ran some other errands to the P.O., stood in line for 20 min., then tried on the

stuff in the store & nbsp;I wanted to buy, & nbsp; went to the food store to get 4

items, walked from one side of the store to the other, to the check out, and

hobbled to my car. & nbsp; My feet were so bad I wanted to scream!!!! & nbsp; When I

got home I couldn't stand the pain, and my husband had to help me into

the house, etc. & nbsp; Had to get 2 pain pills, and sit in my chair with my feet

up. & nbsp; So much for my afternoon out. It just felt good to get out and run

some errands, but what a price to pay.

I know you know what that does to my mind...... most days I am in the house, and

that gets to me.... I know it is so hard for you most days. & nbsp; You have a

young family, and all these disease's make things so hard for you. & nbsp; Like

you, I pray to God for more pain free days, and also to try to make the best of

what has been delt to us. & nbsp; I thank God also for this wonderful site with

all these caring and loving people. & nbsp; It is good to know they really

understand what we are dealing with, and all their compassion, makes a big diff.

in our lives. & nbsp; I know my friends have no idea what living with this disease

is like. & nbsp; Do you find this & nbsp;with your friends also? & nbsp; I know

you & nbsp; have more things to deal with than me, but I know you understand what

it is really like.

I pray you will have better days, pain free, and remember, I care about you

Myleinda. & nbsp; You are a special girl. & nbsp; God love you.

Love,

Barbara & nbsp;

--- In @gro

ups.com, " " & amp;lt;Matsumura_ Clan@ ... & amp;gt;

wrote:

& amp;gt;

& amp;gt; Sharon,

& amp;gt;

& amp;gt; Why do you suspect polymyalgia rheumatica and your physicians RA?

& amp;gt;

& amp;gt;

& amp;gt;

& amp;gt; Not an MD

============ =========

Probably just wishing thinking on my part & amp;lt;g & amp;gt;. HOWEVER, here is

why

I am leaning in that direction.

The way it came on, literally overnight. Pain jumps around. I never

know what new pain I will wake up to (muscles and joints). The pain

from the day before is totally gone. Seems to be focused on my

shoulder/upper arm area, although wrist or finger and knee are common

some days too. This morning my ankle and back are stiff and sore,

which has been been a problem before.

My RA is 84.. SEDS is normal. AND... it came on the tail end of a

upper respitory viral type infection.

Through the day....once I am up and moving, the pain lessens

(although it is never totally gone from whatever area it decides to

hit that day). In the evening and especially through the night.....

the pain is debilitating.

Ibruprophen doesn't touch the pain. One doc put me on a 3 week

regime of anti-inflamatories. .. which don't seem to be helping. ER

gave me a 30 day supply of Codine... which does take the edge off the

pain...... but I only take it when I absolutely have to. I don't

want to run out before I can get into see a Rheumatologist.

The PCP's see that RA reading and they can't seem to focus on

anything else.

Monday morning I will be on the phone making a couple of appointments

with Rheumatologists. Figure I will check out a couple and see who I

feel most comfortable with..

SHARON

============