Update on Aundrea

March 26, 2008

Hi gang,

thank you all for your prayers and well wishes regarding Aundre'a

appointment today with the pediatric rheumatologist. It was an

interesting visit.

The dr. said he doesn't believe Aundrea has ANY rheumatoid type of

disease. He said that his exam on her show know restriction with

range of motion or inflammation.

He did another exam with is something they due to test for

fibromyalgia. She was positive for this. He said that in his

opinion Aundrea has chronic pain aka fibromyalgia.

I told him about all the symptoms that she has had and contnues to

have. He said her pain is real and that there isn't a cure for this.

He did say that he would like us to get her physical therapy, a psyc

eval for biofeedback and he gave us a script for amitryptiline which

is used to help with sleep disorders. (in higher doses it's also

used as an anti-depressant)

He gave us the name of a pediatrician that specializes in adolescence

and is good with Chronic pain issues.

I told him I was concerned, because when the doctors couldn't

determine what was wrong with my sister they started suggesting

chronic pain and psyc visits. I told him that my mom took her to

mayo where they discovered she nearly had a perforated bowel and one

of the worst cases of chrones that they had seen.

So, I told him that if he is certain that all other possibilities

have been exclueded and that she wouldn't have damage due to improper

treatment then I would accept his diagnosis. He said he would run

one more battery of tests to check out everything under the sun. If

that turns up negative then he is confident with the diagnosis of

fibromyalgia.

We are suppose to follow up with him in a month.

So what are your thoughts about this?????

(aundrea 12 fibromyalgia/gerd)

March 26, 2008

How in the world would fibromyalgia and chronic pain explain her rashes that are

consistent when she has joint pain?

I am glad he is running more tests. I don't know what else to say. I " m sure that

you are once again feeling let down and I don't blame you. Maybe the testing

will turn up something. Did he run the lupus panel as well??

and Rob 18 JAS

Update on Aundrea

> Hi gang,

>

> thank you all for your prayers and well wishes regarding

> Aundre'a

> appointment today with the pediatric rheumatologist. It

> was an

> interesting visit.

>

> The dr. said he doesn't believe Aundrea has ANY rheumatoid type

> of

> disease. He said that his exam on her show know

> restriction with

> range of motion or inflammation.

>

> He did another exam with is something they due to test for

> fibromyalgia. She was positive for this. He said

> that in his

> opinion Aundrea has chronic pain aka fibromyalgia.

>

> I told him about all the symptoms that she has had and contnues

> to

> have. He said her pain is real and that there isn't a cure

> for this.

>

> He did say that he would like us to get her physical therapy, a

> psyc

> eval for biofeedback and he gave us a script for amitryptiline

> which

> is used to help with sleep disorders. (in higher doses

> it's also

> used as an anti-depressant)

>

> He gave us the name of a pediatrician that specializes in

> adolescence

> and is good with Chronic pain issues.

>

> I told him I was concerned, because when the doctors couldn't

> determine what was wrong with my sister they started suggesting

> chronic pain and psyc visits. I told him that my mom took

> her to

> mayo where they discovered she nearly had a perforated bowel and

> one

> of the worst cases of chrones that they had seen.

>

> So, I told him that if he is certain that all other

> possibilities

> have been exclueded and that she wouldn't have damage due to

> improper

> treatment then I would accept his diagnosis. He said he

> would run

> one more battery of tests to check out everything under the

> sun. If

> that turns up negative then he is confident with the diagnosis of

> fibromyalgia.

>

> We are suppose to follow up with him in a month.

>

> So what are your thoughts about this?????

>

> (aundrea 12 fibromyalgia/gerd)

>

March 26, 2008

Hi maria,

You know the more I am researching fibromyalgia it actually is

fitting aundrea's symptoms pretty well....surprisingly well.

The rahses are another mystery but Aundrea does have super sensitive

skin. she always has had. So if she is in pain, then maybe the fact

that her face flushes is just her bodies reaction to the pain.

Another possibility could be the hot/cold flashes that she gets which

also is increasing the facial rash.

I actually feel excited about trying the treatment plans. At least

he didn't just jump to narcotics..because we just aren't willing to

do that. But we will try physical therapy, biofeedback, and I am

going to research the amiltyrptiline.

One thing that did show up very cosnistent with fibromyalgia was the

trigger points for pain.

The diagnosing criteria is

3 months or more of widespread pain

severe pain in 5-11 tirgger points

increased pain aggravated by overactivity

increased subjective swelling

increased pain by colder weather or humidity or

illness changes by weather

stiffness

skin tenderness

headaches

brusing

Raynaud phenomenon

irritable bowel syndrome

fatigue

morning fatigue

numbness

lack of energy

widespread pain or aching

abdominal pain

Aundrea has all of the above. That seems pretty remarkable to me

the things that she doesn't seem to have are the

anxity, stress, depression, -

of course there is no mention of the rashes.

I am going to start making calls tomorrow for the therapy

recommendation and getting an appt with the new ped.

He did say that fibro is a life long disease with no known cure but

it also doesn't cause deformity, structural damage or shortenend life

span. The trick will be to give her a good quality of life in spite

of the pain and to diminish it as best as we can.

(Aundrea 12 fibromyalgia/gerd)

-- In , and Schulz

<snooksmama@...> wrote:

>

> How in the world would fibromyalgia and chronic pain explain her

rashes that are consistent when she has joint pain?

> I am glad he is running more tests. I don't know what else to say.

I " m sure that you are once again feeling let down and I don't blame

you. Maybe the testing will turn up something. Did he run the lupus

panel as well??

> and Rob 18 JAS

>

> Update on Aundrea

>

> > Hi gang,

> >

> > thank you all for your prayers and well wishes regarding

> > Aundre'a

> > appointment today with the pediatric rheumatologist. It

> > was an

> > interesting visit.

> >

> > The dr. said he doesn't believe Aundrea has ANY rheumatoid type

> > of

> > disease. He said that his exam on her show know

> > restriction with

> > range of motion or inflammation.

> >

> > He did another exam with is something they due to test for

> > fibromyalgia. She was positive for this. He said

> > that in his

> > opinion Aundrea has chronic pain aka fibromyalgia.

> >

> > I told him about all the symptoms that she has had and contnues

> > to

> > have. He said her pain is real and that there isn't a cure

> > for this.

> >

> > He did say that he would like us to get her physical therapy, a

> > psyc

> > eval for biofeedback and he gave us a script for amitryptiline

> > which

> > is used to help with sleep disorders. (in higher doses

> > it's also

> > used as an anti-depressant)

> >

> > He gave us the name of a pediatrician that specializes in

> > adolescence

> > and is good with Chronic pain issues.

> >

> > I told him I was concerned, because when the doctors couldn't

> > determine what was wrong with my sister they started suggesting

> > chronic pain and psyc visits. I told him that my mom took

> > her to

> > mayo where they discovered she nearly had a perforated bowel and

> > one

> > of the worst cases of chrones that they had seen.

> >

> > So, I told him that if he is certain that all other

> > possibilities

> > have been exclueded and that she wouldn't have damage due to

> > improper

> > treatment then I would accept his diagnosis. He said he

> > would run

> > one more battery of tests to check out everything under the

> > sun. If

> > that turns up negative then he is confident with the diagnosis of

> > fibromyalgia.

> >

> > We are suppose to follow up with him in a month.

> >

> > So what are your thoughts about this?????

> >

> > (aundrea 12 fibromyalgia/gerd)

> >

>

March 26, 2008

Hi Beth,

You can read my post to but I really feel that this may

actually be the correct diagnosis. The only thing that doesn't fit

is the rashes..but that coud just be an Aundrea thing. She is fair

skinned and has had odd rashes for all of her life. give her a drug

she gets a rash. runs a fever gets a rash, scarlet fever body wide

rashes,..It may be something her body does in response to pain.

Read the other post and let me know if you think Hannah is similar in

the diagnosis requirements.

Has hannah ever had the trigger point test for fibro?

The labs were for lupus, thryoid, set rate, ana, rheumatoid factor,

and lots of other stuff.

(Aundrea 12 fibromyalgia/gerd)-

-- In , Beth Yohnk <yohnkmom@...> wrote:

>

> It's interesting that he came to this conclusion given her rashes.

I don't think rashes fit with fibro at all. Maybe fibro is part of

it, but I don't think that's the whole diagnosis. I'm sure you are

so frustrated, I know we've been told the same things they told you.

What tests are they running? Hang in there, I'll be very curious

what labs show.

>

> Beth & Hannah, 11,unspecified arthritis; asthma; gerd; migraines

>

> Sending prayers & happy thoughts,

> Beth :-)

>

> Update on Aundrea

>

> Hi gang,

>

> thank you all for your prayers and well wishes regarding Aundre'a

> appointment today with the pediatric rheumatologist. It was an

> interesting visit.

>

> The dr. said he doesn't believe Aundrea has ANY rheumatoid type of

> disease. He said that his exam on her show know restriction with

> range of motion or inflammation.

>

> He did another exam with is something they due to test for

> fibromyalgia. She was positive for this. He said that in his

> opinion Aundrea has chronic pain aka fibromyalgia.

>

> I told him about all the symptoms that she has had and contnues to

> have. He said her pain is real and that there isn't a cure for

this.

>

> He did say that he would like us to get her physical therapy, a

psyc

> eval for biofeedback and he gave us a script for amitryptiline

which

> is used to help with sleep disorders. (in higher doses it's also

> used as an anti-depressant)

>

> He gave us the name of a pediatrician that specializes in

adolescence

> and is good with Chronic pain issues.

>

> I told him I was concerned, because when the doctors couldn't

> determine what was wrong with my sister they started suggesting

> chronic pain and psyc visits. I told him that my mom took her to

> mayo where they discovered she nearly had a perforated bowel and

one

> of the worst cases of chrones that they had seen.

>

> So, I told him that if he is certain that all other possibilities

> have been exclueded and that she wouldn't have damage due to

improper

> treatment then I would accept his diagnosis. He said he would run

> one more battery of tests to check out everything under the sun. If

> that turns up negative then he is confident with the diagnosis of

> fibromyalgia.

>

> We are suppose to follow up with him in a month.

>

> So what are your thoughts about this?????

>

> (aundrea 12 fibromyalgia/ gerd)

>

March 26, 2008

:

I did read your other post. Hannah has some of those things, but certainly not

all. I have asked for her to be tested for fibro, but no one has ever done it.

I am going to ask her ped again when I speak with him next week. Mike takes

amitriptylene in a low dose for tension headaches. He said the first few days

made him feel like he was in a fog, but after that he was fine. He says his

quality of sleep has never been better.

Hannah has had her fair share of sleep issues, so who knows maybe this is where

we will end up too. I've certainly thought about it often. Keep me posted.

Let me know too what you think if the biofeedback, that certainly helped Hannah

a lot. I also want to ask about having her thyroid tested.

Sending prayers & happy thoughts,

Beth :-)

Update on Aundrea

>

> Hi gang,

>

> thank you all for your prayers and well wishes regarding Aundre'a

> appointment today with the pediatric rheumatologist. It was an

> interesting visit.

>

> The dr. said he doesn't believe Aundrea has ANY rheumatoid type of

> disease. He said that his exam on her show know restriction with

> range of motion or inflammation.

>

> He did another exam with is something they due to test for

> fibromyalgia. She was positive for this. He said that in his

> opinion Aundrea has chronic pain aka fibromyalgia.

>

> I told him about all the symptoms that she has had and contnues to

> have. He said her pain is real and that there isn't a cure for

this.

>

> He did say that he would like us to get her physical therapy, a

psyc

> eval for biofeedback and he gave us a script for amitryptiline

which

> is used to help with sleep disorders. (in higher doses it's also

> used as an anti-depressant)

>

> He gave us the name of a pediatrician that specializes in

adolescence

> and is good with Chronic pain issues.

>

> I told him I was concerned, because when the doctors couldn't

> determine what was wrong with my sister they started suggesting

> chronic pain and psyc visits. I told him that my mom took her to

> mayo where they discovered she nearly had a perforated bowel and

one

> of the worst cases of chrones that they had seen.

>

> So, I told him that if he is certain that all other possibilities

> have been exclueded and that she wouldn't have damage due to

improper

> treatment then I would accept his diagnosis. He said he would run

> one more battery of tests to check out everything under the sun. If

> that turns up negative then he is confident with the diagnosis of

> fibromyalgia.

>

> We are suppose to follow up with him in a month.

>

> So what are your thoughts about this?????

>

> (aundrea 12 fibromyalgia/ gerd)

>

March 26, 2008

Beth,

Read through or print out the other info that I posted about fibro.

Take a look at these pressure points. Drea didn't even know that she

had pain above her waist except for her elbows until he tested the

trigger points and then she just winced like crazy. It was pretty

surprising.

The amount of pressure is pretty much the same you would apply if you

were to press on your fingernail until it turns white.

Maybe Hannah could share with Aundrea about her experience with

biofeedback. I mentioned to drea that Hannah had done this.

these are the locations of the trigger points.

Media file 1: Illustration of 9 paired tender points identified in

the 1990 statement of the American College of Rheumatology on

fibromyalgia. They are as follows: (a) insertion of nuchal muscles

into occiput, ( upper border of trapezius, © muscle attachments

to upper medial border of scapula, (d) anterior aspects of the C5–C7

intertransverse spaces, (e) second rib space 3 cm lateral to the

sternal border, (f) muscle attachments to lateral epicondyle 2 cm

below bony prominence, (g) upper outer quadrant of gluteal muscles,

(h) muscle attachments just posterior to greater trochanter, and (i)

medial fat pad of knee proximal to joint line.

(Aundrea 12 fibromyalgia)

- In , Beth Yohnk <yohnkmom@...> wrote:

>

> :

> I did read your other post. Hannah has some of those things, but

certainly not all. I have asked for her to be tested for fibro, but

no one has ever done it. I am going to ask her ped again when I

speak with him next week. Mike takes amitriptylene in a low dose for

tension headaches. He said the first few days made him feel like he

was in a fog, but after that he was fine. He says his quality of

sleep has never been better.

>

> Hannah has had her fair share of sleep issues, so who knows maybe

this is where we will end up too. I've certainly thought about it

often. Keep me posted. Let me know too what you think if the

biofeedback, that certainly helped Hannah a lot. I also want to ask

about having her thyroid tested.

>

> Sending prayers & happy thoughts,

> Beth :-)

>

> Update on Aundrea

> >

> > Hi gang,

> >

> > thank you all for your prayers and well wishes regarding Aundre'a

> > appointment today with the pediatric rheumatologist. It was an

> > interesting visit.

> >

> > The dr. said he doesn't believe Aundrea has ANY rheumatoid type

of

> > disease. He said that his exam on her show know restriction with

> > range of motion or inflammation.

> >

> > He did another exam with is something they due to test for

> > fibromyalgia. She was positive for this. He said that in his

> > opinion Aundrea has chronic pain aka fibromyalgia.

> >

> > I told him about all the symptoms that she has had and contnues

to

> > have. He said her pain is real and that there isn't a cure for

> this.

> >

> > He did say that he would like us to get her physical therapy, a

> psyc

> > eval for biofeedback and he gave us a script for amitryptiline

> which

> > is used to help with sleep disorders. (in higher doses it's also

> > used as an anti-depressant)

> >

> > He gave us the name of a pediatrician that specializes in

> adolescence

> > and is good with Chronic pain issues.

> >

> > I told him I was concerned, because when the doctors couldn't

> > determine what was wrong with my sister they started suggesting

> > chronic pain and psyc visits. I told him that my mom took her to

> > mayo where they discovered she nearly had a perforated bowel and

> one

> > of the worst cases of chrones that they had seen.

> >

> > So, I told him that if he is certain that all other possibilities

> > have been exclueded and that she wouldn't have damage due to

> improper

> > treatment then I would accept his diagnosis. He said he would run

> > one more battery of tests to check out everything under the sun.

If

> > that turns up negative then he is confident with the diagnosis of

> > fibromyalgia.

> >

> > We are suppose to follow up with him in a month.

> >

> > So what are your thoughts about this?????

> >

> > (aundrea 12 fibromyalgia/ gerd)

> >

March 26, 2008

Im aware of the gufeinicien cough syrup in super high doses treatment by dr

st armand but not sure how I feel about that one. Like all treeatments,

alternative or FDA approved.. >i figure.. approach with caution.. lol I know

some people swear by it and there is a reason the 'cough syrup' works.... so

I'm not sure it's really something to laugh at but maybe.. I dont know.

Anyways, I have Fibro.. Ive had it since a little girl.... they have gone

through diagnosing it and deciding i didnt have itbecause I was too young

and than saying I did have it. lol. Rashes is def. not a part of FMS. I did

NOT have any of the issues with depresison, anxiety etc that go along with

many with Fibro either for most of my life until I started college... lol. I

would suggest doing research in particular on Juvenile onset Fibromyalgia

Syndrome as it is a little Different from the typical adult ACR

criterion/representation of FMS. I was dx with the Juvenile type and there

isn't a lot of research on it but there are some differences.

I also have other joint stuff that doesn't fir FM which is why they said I

also have JRA but I never fit the criteria quite well. Like I have a

chronically elevated ESR and CRP no matter what they do and other crap.

Anyways, as for Fibro.... Biofeedback and other relaxation techniques are

great. Learning to pace yourself... swimming is good. The amitruptyline can

make you gain weight. I detest the stuff and call it Hellavil since it's

primary name is Elavil.... but some people do well with it. There are other

medications that they can try as well as having a good sleep routine and

getting deep sleep is one of the best things that really helps the muscles

repair themselves.

I see or was seeing a pain specialist for a long time so they could do

trigger point injections and also had PT for myofascial release. I have

Mypfascial pain too which is similar to fibro but I have these knots in a

lot of my muscles that are very tight and painful. And that is what the

myofascial pain syndrome tends to cause.

ANyways, i know quite a lot about FMS so if you have questions, ask away....

a really good site for information is the National Fibromyalgia Association.

www.FMAware.org <http://www.fmaware.org/> I think thats the website. I know

the people who started this place and have been to one of their

conferences... I actually did a presentation on Juvenile Fibromyalgia there

years aago

Issadora

On Wed, Mar 26, 2008 at 7:50 PM, and Schulz <

snooksmama@...> wrote:

> I'm sorry , I didn't mean to sound so negative. I'm glad that you

> are feeling excited. What, if anything, did he say about her rashes? I am

> really curious...

> I have also known someone with a fibromyalgia diagnosis and she swears by

> guafenesin (it is actually a cough medicine, go figure) but it was

> instrumental in her achieving remission.

> and Rob 18 JAS

>

> Update on Aundrea

> > > < %40>

> > >

> > > > Hi gang,

> > > >

> > > > thank you all for your prayers and well wishes regarding

> > > > Aundre'a

> > > > appointment today with the pediatric rheumatologist.

> > It

> > > > was an

> > > > interesting visit.

> > > >

> > > > The dr. said he doesn't believe Aundrea has ANY rheumatoid

> > type

> > > > of

> > > > disease. He said that his exam on her show know

> > > > restriction with

> > > > range of motion or inflammation.

> > > >

> > > > He did another exam with is something they due to test for

> > > > fibromyalgia. She was positive for this. He said

> > > > that in his

> > > > opinion Aundrea has chronic pain aka fibromyalgia.

> > > >

> > > > I told him about all the symptoms that she has had and

> > contnues

> > > > to

> > > > have. He said her pain is real and that there isn't a

> > cure

> > > > for this.

> > > >

> > > > He did say that he would like us to get her physical

> > therapy, a

> > > > psyc

> > > > eval for biofeedback and he gave us a script for

> > amitryptiline

> > > > which

> > > > is used to help with sleep disorders. (in higher doses

> > > > it's also

> > > > used as an anti-depressant)

> > > >

> > > > He gave us the name of a pediatrician that specializes in

> > > > adolescence

> > > > and is good with Chronic pain issues.

> > > >

> > > > I told him I was concerned, because when the doctors

> > couldn't

> > > > determine what was wrong with my sister they started

> > suggesting

> > > > chronic pain and psyc visits. I told him that my mom

> > took

> > > > her to

> > > > mayo where they discovered she nearly had a perforated bowel

> > and

> > > > one

> > > > of the worst cases of chrones that they had seen.

> > > >

> > > > So, I told him that if he is certain that all other

> > > > possibilities

> > > > have been exclueded and that she wouldn't have damage due to

> > > > improper

> > > > treatment then I would accept his diagnosis. He said

> > he

> > > > would run

> > > > one more battery of tests to check out everything under the

> > > > sun. If

> > > > that turns up negative then he is confident with the

> > diagnosis of

> > > > fibromyalgia.

> > > >

> > > > We are suppose to follow up with him in a month.

> > > >

> > > > So what are your thoughts about this?????

> > > >

> > > > (aundrea 12 fibromyalgia/gerd)

> > > >

> > >

July 12, 2008

-,

I'm sorry to read of 's swollen toe, I hope you find some

answers soon. i can't see it being gout though.

I was dx with fibromyalgia a couple of weeks ago, so I feel her pain.

It suxs and the fatigue is a killer.

let her know shes not alone.

hugs helen and (10,systemic)

-- In , " sonia1md " <sonia1md@...> wrote:

>

> Hello all,

>

> Aundrea has had a swollen big toe for 3 weeks now. It is more

> swollen at night than in the morning and she hasn't been able to

bear

> weight on it. She walks on the side of her foot. We have tried

ice

> and heat. Sometimes it is to painful to stand the weight of a

sheet

> on it.

>

> We met with her dr. yesterday who said that the symptoms all seem

> like gout. Of course, given that Aundrea rarely ever consumes

> alcohol (just kidding) never consumes alcohol and isnt a high

protein

> eater nor is she an adult...she doesn't really fit the profile. Of

> couse she doesn't seem to fit the profile for anything. Anyway,

the

> medication they would use would likely worsen her stomach issues

that

> she has been having related to GERD, so we are going to hold off on

> treatment and see if she improves on her own.

>

> Her tmj and joint issues have been more prevalent so her medication

> was for fibromylagia was increased and we started her back on

> protonix for GERD. Hopefully, this will help everthing to settle

> back down.

>

> So, out of curiosity has anyone else had Gout. What type of

> treatment if anything help to lessen the pain. And did it reoccur?

>

> (Aundrea 12 fibromyalgia/Gerd/Gout???)

>

July 12, 2008

were they going to put her on colchicine. my daughter is on that for familial

mediteranean fever syndrome. she also has severe stomach issues, and luckily

she has not had a problem with it. it is strange though, because if there is

one person that gets a certain side effect it is usually ciarra. just

wondering. shelly

>

> Hello all,

>

> Aundrea has had a swollen big toe for 3 weeks now. It is more

> swollen at night than in the morning and she hasn't been able to

bear

> weight on it. She walks on the side of her foot. We have tried

ice

> and heat. Sometimes it is to painful to stand the weight of a

sheet

> on it.

>

> We met with her dr. yesterday who said that the symptoms all seem

> like gout. Of course, given that Aundrea rarely ever consumes

> alcohol (just kidding) never consumes alcohol and isnt a high

protein

> eater nor is she an adult...she doesn't really fit the profile. Of

> couse she doesn't seem to fit the profile for anything. Anyway,

the

> medication they would use would likely worsen her stomach issues

that

> she has been having related to GERD, so we are going to hold off on

> treatment and see if she improves on her own.

>

> Her tmj and joint issues have been more prevalent so her medication

> was for fibromylagia was increased and we started her back on

> protonix for GERD. Hopefully, this will help everthing to settle

> back down.

>

> So, out of curiosity has anyone else had Gout. What type of

> treatment if anything help to lessen the pain. And did it reoccur?

>

> (Aundrea 12 fibromyalgia/ Gerd/Gout? ??)

>

July 13, 2008

That sounds so painful. If it is gout, OUCH!!

Even if it isn't, OUCH!

BUT if it is, people with gout have to avoid certain foods. It is worth a try to

eliminate these foods from her diet:

Some of the common beverages, which gout patients should avoid, include coffee,

tea, cocoa and even chocolate. Some of these beverages are already part and

parcel of ones daily life that it is seriously a bit different to imagine having

to abstain drinking them. If you think it is really no big deal to indulge in it

once in awhile, you will really have to think twice. Is the pain from a possible

gout attack really going to be worth it from your indulgence?

The second list of food gout patients should avoid includes gizzard, kidney,

seafood, heart, gravy and red meats. Alcohol should also be place in the list of

food to be avoided. Any form of alcohol including wine or beer can trigger

attacks of gout. It is significant to memorize the list of food to avoid as it

can help to reduce the amount of gout attacks controlling drugs one will have to

take.

The third and somehow the list which most people consider as the most healthy

choice is simply a bit hard to comprehend why it should be avoided by gout

patients. Peas, spinach, lentils and beans are vegetables that should be avoided

if one is diagnosed with gout.

It is seriously important for people with gout to bear in mind the types of food

items that are harmful and beneficial to their gout conditions. Since you now

have a better knowledge of the food types that should be consumed, it might be a

good habit of what to buy and what not to buy when you do your grocery shopping

the next time.

---- Original Message -----

From: sonia1md <sonia1md@...>

Date: Friday, July 11, 2008 14:11

Subject: update on Aundrea

> Hello all,

>

> Aundrea has had a swollen big toe for 3 weeks now. It is

> more

> swollen at night than in the morning and she hasn't been able to

> bear

> weight on it. She walks on the side of her foot. We

> have tried ice

> and heat. Sometimes it is to painful to stand the weight

> of a sheet

> on it.

>

> We met with her dr. yesterday who said that the symptoms all

> seem

> like gout. Of course, given that Aundrea rarely ever

> consumes

> alcohol (just kidding) never consumes alcohol and isnt a high

> protein

> eater nor is she an adult...she doesn't really fit the

> profile. Of

> couse she doesn't seem to fit the profile for anything.

> Anyway, the

> medication they would use would likely worsen her stomach issues

> that

> she has been having related to GERD, so we are going to hold off

> on

> treatment and see if she improves on her own.

>

> Her tmj and joint issues have been more prevalent so her

> medication

> was for fibromylagia was increased and we started her back on

> protonix for GERD. Hopefully, this will help everthing to

> settle

> back down.

>

> So, out of curiosity has anyone else had Gout. What type

> of

> treatment if anything help to lessen the pain. And did it

> reoccur?

> (Aundrea 12 fibromyalgia/Gerd/Gout???)

>

July 13, 2008

Wow Helen, I am so sorry to learn that you were recently diagnosed

with Fibromyalgia. Have they started you on any medications? What

are you doing to help decrease the pain?

You might be right about the gout diagnosis. I really have no idea.

she is still having pain. It's worse when she exercises or walks on

it. Today she had pain in her toes on the other foot. They weren't

swollen though, like her big toe has been.

Her TMJ has been really bad. Makes you start to question everything.

They just increased her amityrptiline to 25 mg so hopefully that will

help some with the fibro issues.

How has Nick been doing this summer?

(Aundrea 12 fibromyalgia)--

- In , " hburger64 " <hburger64@...> wrote:

>

> -,

>

> I'm sorry to read of 's swollen toe, I hope you find some

> answers soon. i can't see it being gout though.

>

> I was dx with fibromyalgia a couple of weeks ago, so I feel her

pain.

> It suxs and the fatigue is a killer.

>

> let her know shes not alone.

>

> hugs helen and (10,systemic)

>

> -- In , " sonia1md " <sonia1md@> wrote:

> >

> > Hello all,

> >

> > Aundrea has had a swollen big toe for 3 weeks now. It is more

> > swollen at night than in the morning and she hasn't been able to

> bear

> > weight on it. She walks on the side of her foot. We have tried

> ice

> > and heat. Sometimes it is to painful to stand the weight of a

> sheet

> > on it.

> >

> > We met with her dr. yesterday who said that the symptoms all seem

> > like gout. Of course, given that Aundrea rarely ever consumes

> > alcohol (just kidding) never consumes alcohol and isnt a high

> protein

> > eater nor is she an adult...she doesn't really fit the profile.

Of

> > couse she doesn't seem to fit the profile for anything. Anyway,

> the

> > medication they would use would likely worsen her stomach issues

> that

> > she has been having related to GERD, so we are going to hold off

on

> > treatment and see if she improves on her own.

> >

> > Her tmj and joint issues have been more prevalent so her

medication

> > was for fibromylagia was increased and we started her back on

> > protonix for GERD. Hopefully, this will help everthing to settle

> > back down.

> >

> > So, out of curiosity has anyone else had Gout. What type of

> > treatment if anything help to lessen the pain. And did it

reoccur?

> >

> > (Aundrea 12 fibromyalgia/Gerd/Gout???)

> >

>

July 13, 2008

-Hi ,

I guess Aundrea is similar to Ciarra as far as side effects typically

go. We haven't started any treatment yet for the big toe issue.

their treatment plan for Gout sounded miserable. We would have to

get her uric acid levels tested first to make sure they were actually

correct in their diagnosis.

The plan is for us to wait for 2 weeks and if she is still have the

same problem we call the dr. back.

How has Ciarra been doing this summer/

(aundrea 12 fibromyalgia)

-- In , shelly richards <shelly443142002@...>

wrote:

>

> were they going to put her on colchicine. my daughter is on that

for familial mediteranean fever syndrome. she also has severe

stomach issues, and luckily she has not had a problem with it. it is

strange though, because if there is one person that gets a certain

side effect it is usually ciarra. just wondering. shelly

>

> >

> > Hello all,

> >

> > Aundrea has had a swollen big toe for 3 weeks now. It is more

> > swollen at night than in the morning and she hasn't been able to

> bear

> > weight on it. She walks on the side of her foot. We have tried

> ice

> > and heat. Sometimes it is to painful to stand the weight of a

> sheet

> > on it.

> >

> > We met with her dr. yesterday who said that the symptoms all seem

> > like gout. Of course, given that Aundrea rarely ever consumes

> > alcohol (just kidding) never consumes alcohol and isnt a high

> protein

> > eater nor is she an adult...she doesn't really fit the profile.

Of

> > couse she doesn't seem to fit the profile for anything. Anyway,

> the

> > medication they would use would likely worsen her stomach issues

> that

> > she has been having related to GERD, so we are going to hold off

on

> > treatment and see if she improves on her own.

> >

> > Her tmj and joint issues have been more prevalent so her

medication

> > was for fibromylagia was increased and we started her back on

> > protonix for GERD. Hopefully, this will help everthing to settle

> > back down.

> >

> > So, out of curiosity has anyone else had Gout. What type of

> > treatment if anything help to lessen the pain. And did it reoccur?

> >

> > (Aundrea 12 fibromyalgia/ Gerd/Gout? ??)

> >

>

July 13, 2008

I'm wondering if what Aundrea has isn't " sausage digit " , or

dactylitis. It is pretty common with the spondies, especially

psoriatic arthritis. My son has had it several times, and it is

just as you've described. One of his big toes swells up like a

balloon and becomes very painful. In his case it responds well to

NSAIDS, although it sounds like Aundrea can't take NSAIDS with her

GERD. I'm not sure what other types of treatment are given for

sausage digit, though. I hope you find some way to help Aundrea

because I've seen with my son how painful it can be.

(, aged 15 with spondy)

>

> Hello all,

>

> Aundrea has had a swollen big toe for 3 weeks now. It is more

> swollen at night than in the morning and she hasn't been able to

bear

> weight on it. She walks on the side of her foot. We have tried

ice

> and heat. Sometimes it is to painful to stand the weight of a

sheet

> on it.

>

> We met with her dr. yesterday who said that the symptoms all seem

> like gout. Of course, given that Aundrea rarely ever consumes

> alcohol (just kidding) never consumes alcohol and isnt a high

protein

> eater nor is she an adult...she doesn't really fit the profile.

Of

> couse she doesn't seem to fit the profile for anything. Anyway,

the

> medication they would use would likely worsen her stomach issues

that

> she has been having related to GERD, so we are going to hold off

on

> treatment and see if she improves on her own.

>

> Her tmj and joint issues have been more prevalent so her

medication

> was for fibromylagia was increased and we started her back on

> protonix for GERD. Hopefully, this will help everthing to settle

> back down.

>

> So, out of curiosity has anyone else had Gout. What type of

> treatment if anything help to lessen the pain. And did it reoccur?

>

> (Aundrea 12 fibromyalgia/Gerd/Gout???)

>

July 13, 2008

I'd have to agree with you. Redness is a hallmark sign of gout. It also seems

pretty unlikely in someone Aundrea's age. I'm so glad that you have a rheumy you

feel comfortable with now. I hope that things improve, or at least, that these

new pains will accomplish something positive for her,that is, aid in a

diagnosis. Blessings,

and Rob 19 JAS

update on Aundrea

> >

> > > Hello all,

> > >

> > > Aundrea has had a swollen big toe for 3 weeks now. It

> is

> > > more

> > > swollen at night than in the morning and she hasn't been

> able to

> > > bear

> > > weight on it. She walks on the side of her foot.

> We

> > > have tried ice

> > > and heat. Sometimes it is to painful to stand the

> weight

> > > of a sheet

> > > on it.

> > >

> > > We met with her dr. yesterday who said that the symptoms all

> > > seem

> > > like gout. Of course, given that Aundrea rarely ever

> > > consumes

> > > alcohol (just kidding) never consumes alcohol and isnt a

> high

> > > protein

> > > eater nor is she an adult...she doesn't really fit the

> > > profile. Of

> > > couse she doesn't seem to fit the profile for

> anything.

> > > Anyway, the

> > > medication they would use would likely worsen her stomach

> issues

> > > that

> > > she has been having related to GERD, so we are going to hold

> off

> > > on

> > > treatment and see if she improves on her own.

> > >

> > > Her tmj and joint issues have been more prevalent so her

> > > medication

> > > was for fibromylagia was increased and we started her back

> on

> > > protonix for GERD. Hopefully, this will help everthing

> to

> > > settle

> > > back down.

> > >

> > > So, out of curiosity has anyone else had Gout. What

> type

> > > of

> > > treatment if anything help to lessen the pain. And did

> it

> > > reoccur?

> > > (Aundrea 12 fibromyalgia/Gerd/Gout???)

> > >

> >

July 14, 2008

HI, . Just jumping in - my hubby has gout. When he has a flare, the

toe is always hot and red. It feels broken. You cannot even put a bed

sheet on it without incredible pain. I doubt if she could last this long

with the pain I have seen. It gets worse within days to where you cannot

walk. My husband has had two true flares, and when he starts to feel the

pain (it is actually crystals forming in the toe area from uric acid, so

it feels like glass) coming on, he will drink large quantities of 100%

cranberry juice to try to cut off a flare. It does work for him. I have

also heard of drinking cherry juice (again 100%). The common treatment

is indomethican (sp?) and it does work quite quickly usually.

To be honest, Aundrea sounds more like the swollen toe that Chris

sometimes gets. It swells like in gout, but none of the extreme redness

or intense severe pain. Hope this helps, Michele ( 21, spondy)

________________________________

From: [mailto: ] On

Behalf Of and Schulz

Sent: Sunday, July 13, 2008 8:40 AM

Subject: Re: Re: update on Aundrea

I'd have to agree with you. Redness is a hallmark sign of gout. It also

seems pretty unlikely in someone Aundrea's age. I'm so glad that you

have a rheumy you feel comfortable with now. I hope that things improve,

or at least, that these new pains will accomplish something positive for

her,that is, aid in a diagnosis. Blessings,

and Rob 19 JAS

update on Aundrea

> > <mailto: %40>

> >

> > > Hello all,

> > >

> > > Aundrea has had a swollen big toe for 3 weeks now. It

> is

> > > more

> > > swollen at night than in the morning and she hasn't been

> able to

> > > bear

> > > weight on it. She walks on the side of her foot.

> We

> > > have tried ice

> > > and heat. Sometimes it is to painful to stand the

> weight

> > > of a sheet

> > > on it.

> > >

> > > We met with her dr. yesterday who said that the symptoms all

> > > seem

> > > like gout. Of course, given that Aundrea rarely ever

> > > consumes

> > > alcohol (just kidding) never consumes alcohol and isnt a

> high

> > > protein

> > > eater nor is she an adult...she doesn't really fit the

> > > profile. Of

> > > couse she doesn't seem to fit the profile for

> anything.

> > > Anyway, the

> > > medication they would use would likely worsen her stomach

> issues

> > > that

> > > she has been having related to GERD, so we are going to hold

> off

> > > on

> > > treatment and see if she improves on her own.

> > >

> > > Her tmj and joint issues have been more prevalent so her

> > > medication

> > > was for fibromylagia was increased and we started her back

> on

> > > protonix for GERD. Hopefully, this will help everthing

> to

> > > settle

> > > back down.

> > >

> > > So, out of curiosity has anyone else had Gout. What

> type

> > > of

> > > treatment if anything help to lessen the pain. And did

> it

> > > reoccur?

> > > (Aundrea 12 fibromyalgia/Gerd/Gout???)

> > >

> >

July 14, 2008