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--- In , " kayjamikel " <zookeeperjoy@e...>

wrote:

I have sworn for years that i have some type of rheumatological

> disease, but doctor's have been slow to diagnose at all. I have

Where do I start with my

> doctor? Anything work for the pain?

>

> Thanks,

> Joy

Tell the doctor what you said in the first sentence: " I know I have

some kind of rheumatological disease. " Say it with conviction.Try

different doctors until you find one with whom you are satisfied.

There is relief from your pain.

Sierra

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I have sworn for years that i have some type of rheumatological

> disease, but doctor's have been slow to diagnose at all. I have

Where do I start with my

> doctor? Anything work for the pain?

>

> Thanks,

> Joy

Tell the doctor what you said in the first sentence: " I know I have

some kind of rheumatological disease. " Say it with conviction.Try

different doctors until you find one with whom you are satisfied.

There is relief from your pain.

Sierra

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Share on other sites

Is your doctor a rheumatologist?

--- In , " kayjamikel " <zookeeperjoy@e...>

wrote:

>

>

> Ok, where do I start. I am 38-years-old, have 3 babies, oldest

being

> 6, and have symptoms I cannot explain. It starts years ago with

> positive ANAs and ESRs. On and off throughout the years, these

> levels have been elevated and then next month they are not. I also

> have what i call floating symptoms. For instance, I will have a

> finger that is swollen one week and the next week it is my foot

that

> is swollen. I have had hips I cannot lay on. Feet ache

constantly.

> I have hypothyroidism, GERD, Barrett's esophagus, super elevated

> cholesterol levels, and no diagnosis. This week, one of my fingers

> feels broken. It is all swollen in the nuckle and can barely move

> it. I have sworn for years that i have some type of

rheumatological

> disease, but doctor's have been slow to diagnose at all. I have

for

> at least 12 years ached from head to toe, just aching all the time

> with these painful joint problems floating aroudn my body. I also

> tend to get rashes for no reason. Mainly, my right hand has a

> constant rash, but i have had my face blow up for no reason, etc.

> Does this sound familiar to anybody? Where do I start with my

> doctor? Anything work for the pain?

>

> Thanks,

> Joy

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Is your doctor a rheumatologist?

>

>

> Ok, where do I start. I am 38-years-old, have 3 babies, oldest

being

> 6, and have symptoms I cannot explain. It starts years ago with

> positive ANAs and ESRs. On and off throughout the years, these

> levels have been elevated and then next month they are not. I also

> have what i call floating symptoms. For instance, I will have a

> finger that is swollen one week and the next week it is my foot

that

> is swollen. I have had hips I cannot lay on. Feet ache

constantly.

> I have hypothyroidism, GERD, Barrett's esophagus, super elevated

> cholesterol levels, and no diagnosis. This week, one of my fingers

> feels broken. It is all swollen in the nuckle and can barely move

> it. I have sworn for years that i have some type of

rheumatological

> disease, but doctor's have been slow to diagnose at all. I have

for

> at least 12 years ached from head to toe, just aching all the time

> with these painful joint problems floating aroudn my body. I also

> tend to get rashes for no reason. Mainly, my right hand has a

> constant rash, but i have had my face blow up for no reason, etc.

> Does this sound familiar to anybody? Where do I start with my

> doctor? Anything work for the pain?

>

> Thanks,

> Joy

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Welcome to the group, Joy!

Have you ever seen a rheumatologist?

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] New and need advice.

>

>

>

> Ok, where do I start. I am 38-years-old, have 3 babies, oldest being

> 6, and have symptoms I cannot explain. It starts years ago with

> positive ANAs and ESRs. On and off throughout the years, these

> levels have been elevated and then next month they are not. I also

> have what i call floating symptoms. For instance, I will have a

> finger that is swollen one week and the next week it is my foot that

> is swollen. I have had hips I cannot lay on. Feet ache constantly.

> I have hypothyroidism, GERD, Barrett's esophagus, super elevated

> cholesterol levels, and no diagnosis. This week, one of my fingers

> feels broken. It is all swollen in the nuckle and can barely move

> it. I have sworn for years that i have some type of rheumatological

> disease, but doctor's have been slow to diagnose at all. I have for

> at least 12 years ached from head to toe, just aching all the time

> with these painful joint problems floating aroudn my body. I also

> tend to get rashes for no reason. Mainly, my right hand has a

> constant rash, but i have had my face blow up for no reason, etc.

> Does this sound familiar to anybody? Where do I start with my

> doctor? Anything work for the pain?

>

> Thanks,

> Joy

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Welcome to the group, Joy!

Have you ever seen a rheumatologist?

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] New and need advice.

>

>

>

> Ok, where do I start. I am 38-years-old, have 3 babies, oldest being

> 6, and have symptoms I cannot explain. It starts years ago with

> positive ANAs and ESRs. On and off throughout the years, these

> levels have been elevated and then next month they are not. I also

> have what i call floating symptoms. For instance, I will have a

> finger that is swollen one week and the next week it is my foot that

> is swollen. I have had hips I cannot lay on. Feet ache constantly.

> I have hypothyroidism, GERD, Barrett's esophagus, super elevated

> cholesterol levels, and no diagnosis. This week, one of my fingers

> feels broken. It is all swollen in the nuckle and can barely move

> it. I have sworn for years that i have some type of rheumatological

> disease, but doctor's have been slow to diagnose at all. I have for

> at least 12 years ached from head to toe, just aching all the time

> with these painful joint problems floating aroudn my body. I also

> tend to get rashes for no reason. Mainly, my right hand has a

> constant rash, but i have had my face blow up for no reason, etc.

> Does this sound familiar to anybody? Where do I start with my

> doctor? Anything work for the pain?

>

> Thanks,

> Joy

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Welcome Joy,.....It sounds like you need a new doctor! Do you see a

rheumatologist? If not, that is the first thing you need to do, go

to someone who knows what their doing.

I'm sorry that you have been treated like this with no dx. It's bad

enough to deal with pain, but then to not know why, now that is

frustrating, most of has been through the same thing. Just don't

give up, and find the right doctor for you, Tawny

--- In , " kayjamikel " <zookeeperjoy@e...>

wrote:

>

>

> Ok, where do I start. I am 38-years-old, have 3 babies, oldest

being

> 6, and have symptoms I cannot explain. It starts years ago with

> positive ANAs and ESRs. On and off throughout the years, these

> levels have been elevated and then next month they are not. I also

> have what i call floating symptoms. For instance, I will have a

> finger that is swollen one week and the next week it is my foot

that

> is swollen. I have had hips I cannot lay on. Feet ache

constantly.

> I have hypothyroidism, GERD, Barrett's esophagus, super elevated

> cholesterol levels, and no diagnosis. This week, one of my fingers

> feels broken. It is all swollen in the nuckle and can barely move

> it. I have sworn for years that i have some type of

rheumatological

> disease, but doctor's have been slow to diagnose at all. I have

for

> at least 12 years ached from head to toe, just aching all the time

> with these painful joint problems floating aroudn my body. I also

> tend to get rashes for no reason. Mainly, my right hand has a

> constant rash, but i have had my face blow up for no reason, etc.

> Does this sound familiar to anybody? Where do I start with my

> doctor? Anything work for the pain?

>

> Thanks,

> Joy

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Welcome Joy,.....It sounds like you need a new doctor! Do you see a

rheumatologist? If not, that is the first thing you need to do, go

to someone who knows what their doing.

I'm sorry that you have been treated like this with no dx. It's bad

enough to deal with pain, but then to not know why, now that is

frustrating, most of has been through the same thing. Just don't

give up, and find the right doctor for you, Tawny

>

>

> Ok, where do I start. I am 38-years-old, have 3 babies, oldest

being

> 6, and have symptoms I cannot explain. It starts years ago with

> positive ANAs and ESRs. On and off throughout the years, these

> levels have been elevated and then next month they are not. I also

> have what i call floating symptoms. For instance, I will have a

> finger that is swollen one week and the next week it is my foot

that

> is swollen. I have had hips I cannot lay on. Feet ache

constantly.

> I have hypothyroidism, GERD, Barrett's esophagus, super elevated

> cholesterol levels, and no diagnosis. This week, one of my fingers

> feels broken. It is all swollen in the nuckle and can barely move

> it. I have sworn for years that i have some type of

rheumatological

> disease, but doctor's have been slow to diagnose at all. I have

for

> at least 12 years ached from head to toe, just aching all the time

> with these painful joint problems floating aroudn my body. I also

> tend to get rashes for no reason. Mainly, my right hand has a

> constant rash, but i have had my face blow up for no reason, etc.

> Does this sound familiar to anybody? Where do I start with my

> doctor? Anything work for the pain?

>

> Thanks,

> Joy

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No, not yet been to a rheumatologist, but at last visit with my PCP,

I asked him for a prescription for Elavil, which i have read helps

with general pain that is chronic, and it does help me. So, he then

gave me a referral to a rheumatologist, but that was after a negative

rheumatoid panel, so i figured why bother. But, I am beginning to

think that this is how rheumatological things progress, positive one

month, negative the next. This with the finger this week is

definitely something and i swear it has been other places.

I am going to make an appointment soon. Just was wondering if at my

age, my symptoms, does this sound familiar to anybody before they

were diagnosed. Did symptoms jump around? Were there periods where

there are no symptoms? I am so sorry for being so vague. I am just

extremely frustrated this week with this. Not only the finger, but I

cannot stand up straight for longer than 5 minutes w/o having pain.

I have to bend over to relieve the pain.

Thanks all who answered. I will let you know.

> >

> >

> > Ok, where do I start. I am 38-years-old, have 3 babies, oldest

> being

> > 6, and have symptoms I cannot explain. It starts years ago with

> > positive ANAs and ESRs. On and off throughout the years, these

> > levels have been elevated and then next month they are not. I

also

> > have what i call floating symptoms. For instance, I will have a

> > finger that is swollen one week and the next week it is my foot

> that

> > is swollen. I have had hips I cannot lay on. Feet ache

> constantly.

> > I have hypothyroidism, GERD, Barrett's esophagus, super elevated

> > cholesterol levels, and no diagnosis. This week, one of my

fingers

> > feels broken. It is all swollen in the nuckle and can barely

move

> > it. I have sworn for years that i have some type of

> rheumatological

> > disease, but doctor's have been slow to diagnose at all. I have

> for

> > at least 12 years ached from head to toe, just aching all the

time

> > with these painful joint problems floating aroudn my body. I

also

> > tend to get rashes for no reason. Mainly, my right hand has a

> > constant rash, but i have had my face blow up for no reason,

etc.

> > Does this sound familiar to anybody? Where do I start with my

> > doctor? Anything work for the pain?

> >

> > Thanks,

> > Joy

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No, not yet been to a rheumatologist, but at last visit with my PCP,

I asked him for a prescription for Elavil, which i have read helps

with general pain that is chronic, and it does help me. So, he then

gave me a referral to a rheumatologist, but that was after a negative

rheumatoid panel, so i figured why bother. But, I am beginning to

think that this is how rheumatological things progress, positive one

month, negative the next. This with the finger this week is

definitely something and i swear it has been other places.

I am going to make an appointment soon. Just was wondering if at my

age, my symptoms, does this sound familiar to anybody before they

were diagnosed. Did symptoms jump around? Were there periods where

there are no symptoms? I am so sorry for being so vague. I am just

extremely frustrated this week with this. Not only the finger, but I

cannot stand up straight for longer than 5 minutes w/o having pain.

I have to bend over to relieve the pain.

Thanks all who answered. I will let you know.

> >

> >

> > Ok, where do I start. I am 38-years-old, have 3 babies, oldest

> being

> > 6, and have symptoms I cannot explain. It starts years ago with

> > positive ANAs and ESRs. On and off throughout the years, these

> > levels have been elevated and then next month they are not. I

also

> > have what i call floating symptoms. For instance, I will have a

> > finger that is swollen one week and the next week it is my foot

> that

> > is swollen. I have had hips I cannot lay on. Feet ache

> constantly.

> > I have hypothyroidism, GERD, Barrett's esophagus, super elevated

> > cholesterol levels, and no diagnosis. This week, one of my

fingers

> > feels broken. It is all swollen in the nuckle and can barely

move

> > it. I have sworn for years that i have some type of

> rheumatological

> > disease, but doctor's have been slow to diagnose at all. I have

> for

> > at least 12 years ached from head to toe, just aching all the

time

> > with these painful joint problems floating aroudn my body. I

also

> > tend to get rashes for no reason. Mainly, my right hand has a

> > constant rash, but i have had my face blow up for no reason,

etc.

> > Does this sound familiar to anybody? Where do I start with my

> > doctor? Anything work for the pain?

> >

> > Thanks,

> > Joy

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Joy, how high is your cholesterol? Does it run in your family?

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] Re: New and need advice.

>

>

>

> No, not yet been to a rheumatologist, but at last visit with my PCP,

> I asked him for a prescription for Elavil, which i have read helps

> with general pain that is chronic, and it does help me. So, he then

> gave me a referral to a rheumatologist, but that was after a negative

> rheumatoid panel, so i figured why bother. But, I am beginning to

> think that this is how rheumatological things progress, positive one

> month, negative the next. This with the finger this week is

> definitely something and i swear it has been other places.

>

> I am going to make an appointment soon. Just was wondering if at my

> age, my symptoms, does this sound familiar to anybody before they

> were diagnosed. Did symptoms jump around? Were there periods where

> there are no symptoms? I am so sorry for being so vague. I am just

> extremely frustrated this week with this. Not only the finger, but I

> cannot stand up straight for longer than 5 minutes w/o having pain.

> I have to bend over to relieve the pain.

>

> Thanks all who answered. I will let you know.

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Joy, how high is your cholesterol? Does it run in your family?

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] Re: New and need advice.

>

>

>

> No, not yet been to a rheumatologist, but at last visit with my PCP,

> I asked him for a prescription for Elavil, which i have read helps

> with general pain that is chronic, and it does help me. So, he then

> gave me a referral to a rheumatologist, but that was after a negative

> rheumatoid panel, so i figured why bother. But, I am beginning to

> think that this is how rheumatological things progress, positive one

> month, negative the next. This with the finger this week is

> definitely something and i swear it has been other places.

>

> I am going to make an appointment soon. Just was wondering if at my

> age, my symptoms, does this sound familiar to anybody before they

> were diagnosed. Did symptoms jump around? Were there periods where

> there are no symptoms? I am so sorry for being so vague. I am just

> extremely frustrated this week with this. Not only the finger, but I

> cannot stand up straight for longer than 5 minutes w/o having pain.

> I have to bend over to relieve the pain.

>

> Thanks all who answered. I will let you know.

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A negative rheumatoid factor does not mean anything. Diagnosing RA

is like putting together a puzzle. You get enough pieces and you can

see what the picture is. Some of us have an elevated rheumatoid

factor and some don't. For me, the puzzle pieces were positive

rheumatoid factor, mother with severe RA, RA like symptoms, positive

response to typical RA drugs. For someone else the puzzle might look

different, but have the same diagnosis.

You definitely should see a rheumatologist. My symptoms did come and

go and jump around at the beginning. It took me 9 months to get a

diagnosis, because my rheumy said at first it was just 'brewing' and

then finally that I had it.

Jennie

> > >

> > >

> > > Ok, where do I start. I am 38-years-old, have 3 babies, oldest

> > being

> > > 6, and have symptoms I cannot explain. It starts years ago

with

> > > positive ANAs and ESRs. On and off throughout the years, these

> > > levels have been elevated and then next month they are not. I

> also

> > > have what i call floating symptoms. For instance, I will have

a

> > > finger that is swollen one week and the next week it is my foot

> > that

> > > is swollen. I have had hips I cannot lay on. Feet ache

> > constantly.

> > > I have hypothyroidism, GERD, Barrett's esophagus, super

elevated

> > > cholesterol levels, and no diagnosis. This week, one of my

> fingers

> > > feels broken. It is all swollen in the nuckle and can barely

> move

> > > it. I have sworn for years that i have some type of

> > rheumatological

> > > disease, but doctor's have been slow to diagnose at all. I

have

> > for

> > > at least 12 years ached from head to toe, just aching all the

> time

> > > with these painful joint problems floating aroudn my body. I

> also

> > > tend to get rashes for no reason. Mainly, my right hand has a

> > > constant rash, but i have had my face blow up for no reason,

> etc.

> > > Does this sound familiar to anybody? Where do I start with my

> > > doctor? Anything work for the pain?

> > >

> > > Thanks,

> > > Joy

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A negative rheumatoid factor does not mean anything. Diagnosing RA

is like putting together a puzzle. You get enough pieces and you can

see what the picture is. Some of us have an elevated rheumatoid

factor and some don't. For me, the puzzle pieces were positive

rheumatoid factor, mother with severe RA, RA like symptoms, positive

response to typical RA drugs. For someone else the puzzle might look

different, but have the same diagnosis.

You definitely should see a rheumatologist. My symptoms did come and

go and jump around at the beginning. It took me 9 months to get a

diagnosis, because my rheumy said at first it was just 'brewing' and

then finally that I had it.

Jennie

> > >

> > >

> > > Ok, where do I start. I am 38-years-old, have 3 babies, oldest

> > being

> > > 6, and have symptoms I cannot explain. It starts years ago

with

> > > positive ANAs and ESRs. On and off throughout the years, these

> > > levels have been elevated and then next month they are not. I

> also

> > > have what i call floating symptoms. For instance, I will have

a

> > > finger that is swollen one week and the next week it is my foot

> > that

> > > is swollen. I have had hips I cannot lay on. Feet ache

> > constantly.

> > > I have hypothyroidism, GERD, Barrett's esophagus, super

elevated

> > > cholesterol levels, and no diagnosis. This week, one of my

> fingers

> > > feels broken. It is all swollen in the nuckle and can barely

> move

> > > it. I have sworn for years that i have some type of

> > rheumatological

> > > disease, but doctor's have been slow to diagnose at all. I

have

> > for

> > > at least 12 years ached from head to toe, just aching all the

> time

> > > with these painful joint problems floating aroudn my body. I

> also

> > > tend to get rashes for no reason. Mainly, my right hand has a

> > > constant rash, but i have had my face blow up for no reason,

> etc.

> > > Does this sound familiar to anybody? Where do I start with my

> > > doctor? Anything work for the pain?

> > >

> > > Thanks,

> > > Joy

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Hello,the rheum. team that i see is 4-5 hours out of state for me.So what i have

been doing is taking pictures for them.YOu can also do this,for your dr to see

and to keep a journal of your illness progression.That way if you have to go the

hospital,switch drs,or whatever situation arises,you have your midical info with

you. I also keep copies of all my scans,and all blood work. If your foot

swells one day,take that foot pic and then next week take a pic of your finger

and take them the dr with you.but make sure you keep the pic. for yourself,i

have found that if you let the dr " borrow " them,that they get misplaced.I have

also found that you are your best dr. and if you are multiple swelling and

pain,than that is what is going on,and they need to respect what you are saying

and treat you for those issues.If you are not being validated in your medical

care,that affects your mental state,and i think we all know that affects to a

certain point how our bodies feel. I know for me,that

i feel if my drs dont care,who is going to? So dont give up,there are good drs

out there,you just have to find the right one for you. Sorry this is so long,

but i have gone years without the proper medical care,until the last 2 years,it

is really hard . So hang in there.

Lupie Hugs,

Cheryl

kayjamikel <zookeeperjoy@...> wrote:

No, not yet been to a rheumatologist, but at last visit with my PCP,

I asked him for a prescription for Elavil, which i have read helps

with general pain that is chronic, and it does help me. So, he then

gave me a referral to a rheumatologist, but that was after a negative

rheumatoid panel, so i figured why bother. But, I am beginning to

think that this is how rheumatological things progress, positive one

month, negative the next. This with the finger this week is

definitely something and i swear it has been other places.

I am going to make an appointment soon. Just was wondering if at my

age, my symptoms, does this sound familiar to anybody before they

were diagnosed. Did symptoms jump around? Were there periods where

there are no symptoms? I am so sorry for being so vague. I am just

extremely frustrated this week with this. Not only the finger, but I

cannot stand up straight for longer than 5 minutes w/o having pain.

I have to bend over to relieve the pain.

Thanks all who answered. I will let you know.

> >

> >

> > Ok, where do I start. I am 38-years-old, have 3 babies, oldest

> being

> > 6, and have symptoms I cannot explain. It starts years ago with

> > positive ANAs and ESRs. On and off throughout the years, these

> > levels have been elevated and then next month they are not. I

also

> > have what i call floating symptoms. For instance, I will have a

> > finger that is swollen one week and the next week it is my foot

> that

> > is swollen. I have had hips I cannot lay on. Feet ache

> constantly.

> > I have hypothyroidism, GERD, Barrett's esophagus, super elevated

> > cholesterol levels, and no diagnosis. This week, one of my

fingers

> > feels broken. It is all swollen in the nuckle and can barely

move

> > it. I have sworn for years that i have some type of

> rheumatological

> > disease, but doctor's have been slow to diagnose at all. I have

> for

> > at least 12 years ached from head to toe, just aching all the

time

> > with these painful joint problems floating aroudn my body. I

also

> > tend to get rashes for no reason. Mainly, my right hand has a

> > constant rash, but i have had my face blow up for no reason,

etc.

> > Does this sound familiar to anybody? Where do I start with my

> > doctor? Anything work for the pain?

> >

> > Thanks,

> > Joy

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Share on other sites

Hello,the rheum. team that i see is 4-5 hours out of state for me.So what i have

been doing is taking pictures for them.YOu can also do this,for your dr to see

and to keep a journal of your illness progression.That way if you have to go the

hospital,switch drs,or whatever situation arises,you have your midical info with

you. I also keep copies of all my scans,and all blood work. If your foot

swells one day,take that foot pic and then next week take a pic of your finger

and take them the dr with you.but make sure you keep the pic. for yourself,i

have found that if you let the dr " borrow " them,that they get misplaced.I have

also found that you are your best dr. and if you are multiple swelling and

pain,than that is what is going on,and they need to respect what you are saying

and treat you for those issues.If you are not being validated in your medical

care,that affects your mental state,and i think we all know that affects to a

certain point how our bodies feel. I know for me,that

i feel if my drs dont care,who is going to? So dont give up,there are good drs

out there,you just have to find the right one for you. Sorry this is so long,

but i have gone years without the proper medical care,until the last 2 years,it

is really hard . So hang in there.

Lupie Hugs,

Cheryl

kayjamikel <zookeeperjoy@...> wrote:

No, not yet been to a rheumatologist, but at last visit with my PCP,

I asked him for a prescription for Elavil, which i have read helps

with general pain that is chronic, and it does help me. So, he then

gave me a referral to a rheumatologist, but that was after a negative

rheumatoid panel, so i figured why bother. But, I am beginning to

think that this is how rheumatological things progress, positive one

month, negative the next. This with the finger this week is

definitely something and i swear it has been other places.

I am going to make an appointment soon. Just was wondering if at my

age, my symptoms, does this sound familiar to anybody before they

were diagnosed. Did symptoms jump around? Were there periods where

there are no symptoms? I am so sorry for being so vague. I am just

extremely frustrated this week with this. Not only the finger, but I

cannot stand up straight for longer than 5 minutes w/o having pain.

I have to bend over to relieve the pain.

Thanks all who answered. I will let you know.

> >

> >

> > Ok, where do I start. I am 38-years-old, have 3 babies, oldest

> being

> > 6, and have symptoms I cannot explain. It starts years ago with

> > positive ANAs and ESRs. On and off throughout the years, these

> > levels have been elevated and then next month they are not. I

also

> > have what i call floating symptoms. For instance, I will have a

> > finger that is swollen one week and the next week it is my foot

> that

> > is swollen. I have had hips I cannot lay on. Feet ache

> constantly.

> > I have hypothyroidism, GERD, Barrett's esophagus, super elevated

> > cholesterol levels, and no diagnosis. This week, one of my

fingers

> > feels broken. It is all swollen in the nuckle and can barely

move

> > it. I have sworn for years that i have some type of

> rheumatological

> > disease, but doctor's have been slow to diagnose at all. I have

> for

> > at least 12 years ached from head to toe, just aching all the

time

> > with these painful joint problems floating aroudn my body. I

also

> > tend to get rashes for no reason. Mainly, my right hand has a

> > constant rash, but i have had my face blow up for no reason,

etc.

> > Does this sound familiar to anybody? Where do I start with my

> > doctor? Anything work for the pain?

> >

> > Thanks,

> > Joy

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Joy,

I do not post here often, but come to this site daily for support.

I am 36 years old and was diagnosed with RA in April of this year.

I had never had any symptoms and then in Feb my feet hurt when I

would get out of bed. By March, they were always swollen and I

could barely walk. I was quickly referred from my PCP to a

Podiatrist and finally to a Rheumatologist. I have a very elevated

RA factor and sed rate, so diagnosis was a little easier for me. My

RA is very aggressive. It is always in my feet but one week my

hands or a finger will be swollen, the next week it will be knee,

etc. A month ago I had TMJ in my jaw and was told that that is very

common with RA since it is a joint.

I am currently on 25 mg of methotrexate, 20 mg of bextra,

amitriptylin, and folic acid. My rheumy wants to start me on

Remicade asap, but I am dragging my feet about adding yet another

drug. If you are in pain, you definitely need to get to a

rheumatologist. It is the only thing that saved me from severe

joint damage and he knows his stuff. I am thankful that my rheumy

is very aggressive and will accept nothing less than complete

remission before he stops.

You also need to be sure to seek support from others who are in

chronic pain as well. That is why this board is such a comfort to

me at least. When you are younger and don't look sick, it is very

hard for others to understand what you are going through. My mother-

in-law has had psioratic arthritis for 35 years, so I find a lot of

support from her as well. You should also find out everything you

can about your conditions. My rheumy is always shocked when he will

mention a drug and I will be able to tell him everything about it.

Being informed is your best defense.

Good luck and know that there are others out there who are in the

same boat. I will be thinking about you.

--- In , " kayjamikel " <zookeeperjoy@e...>

wrote:

>

>

> Ok, where do I start. I am 38-years-old, have 3 babies, oldest

being

> 6, and have symptoms I cannot explain. It starts years ago with

> positive ANAs and ESRs. On and off throughout the years, these

> levels have been elevated and then next month they are not. I

also

> have what i call floating symptoms. For instance, I will have a

> finger that is swollen one week and the next week it is my foot

that

> is swollen. I have had hips I cannot lay on. Feet ache

constantly.

> I have hypothyroidism, GERD, Barrett's esophagus, super elevated

> cholesterol levels, and no diagnosis. This week, one of my

fingers

> feels broken. It is all swollen in the nuckle and can barely move

> it. I have sworn for years that i have some type of

rheumatological

> disease, but doctor's have been slow to diagnose at all. I have

for

> at least 12 years ached from head to toe, just aching all the time

> with these painful joint problems floating aroudn my body. I also

> tend to get rashes for no reason. Mainly, my right hand has a

> constant rash, but i have had my face blow up for no reason, etc.

> Does this sound familiar to anybody? Where do I start with my

> doctor? Anything work for the pain?

>

> Thanks,

> Joy

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Share on other sites

Joy,

I do not post here often, but come to this site daily for support.

I am 36 years old and was diagnosed with RA in April of this year.

I had never had any symptoms and then in Feb my feet hurt when I

would get out of bed. By March, they were always swollen and I

could barely walk. I was quickly referred from my PCP to a

Podiatrist and finally to a Rheumatologist. I have a very elevated

RA factor and sed rate, so diagnosis was a little easier for me. My

RA is very aggressive. It is always in my feet but one week my

hands or a finger will be swollen, the next week it will be knee,

etc. A month ago I had TMJ in my jaw and was told that that is very

common with RA since it is a joint.

I am currently on 25 mg of methotrexate, 20 mg of bextra,

amitriptylin, and folic acid. My rheumy wants to start me on

Remicade asap, but I am dragging my feet about adding yet another

drug. If you are in pain, you definitely need to get to a

rheumatologist. It is the only thing that saved me from severe

joint damage and he knows his stuff. I am thankful that my rheumy

is very aggressive and will accept nothing less than complete

remission before he stops.

You also need to be sure to seek support from others who are in

chronic pain as well. That is why this board is such a comfort to

me at least. When you are younger and don't look sick, it is very

hard for others to understand what you are going through. My mother-

in-law has had psioratic arthritis for 35 years, so I find a lot of

support from her as well. You should also find out everything you

can about your conditions. My rheumy is always shocked when he will

mention a drug and I will be able to tell him everything about it.

Being informed is your best defense.

Good luck and know that there are others out there who are in the

same boat. I will be thinking about you.

>

>

> Ok, where do I start. I am 38-years-old, have 3 babies, oldest

being

> 6, and have symptoms I cannot explain. It starts years ago with

> positive ANAs and ESRs. On and off throughout the years, these

> levels have been elevated and then next month they are not. I

also

> have what i call floating symptoms. For instance, I will have a

> finger that is swollen one week and the next week it is my foot

that

> is swollen. I have had hips I cannot lay on. Feet ache

constantly.

> I have hypothyroidism, GERD, Barrett's esophagus, super elevated

> cholesterol levels, and no diagnosis. This week, one of my

fingers

> feels broken. It is all swollen in the nuckle and can barely move

> it. I have sworn for years that i have some type of

rheumatological

> disease, but doctor's have been slow to diagnose at all. I have

for

> at least 12 years ached from head to toe, just aching all the time

> with these painful joint problems floating aroudn my body. I also

> tend to get rashes for no reason. Mainly, my right hand has a

> constant rash, but i have had my face blow up for no reason, etc.

> Does this sound familiar to anybody? Where do I start with my

> doctor? Anything work for the pain?

>

> Thanks,

> Joy

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Good ideas, Cheryl! Having good documentation, including photos, and

being fully portable is very important.

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

Re: [ ] Re: New and need advice.

>

>

> Hello,the rheum. team that i see is 4-5 hours out of state for me.So

what i have been doing is taking pictures for them.YOu can also do

this,for your dr to see and to keep a journal of your illness

progression.That way if you have to go the hospital,switch drs,or

whatever situation arises,you have your midical info with you. I also

keep copies of all my scans,and all blood work. If your foot swells one

day,take that foot pic and then next week take a pic of your finger and

take them the dr with you.but make sure you keep the pic. for yourself,i

have found that if you let the dr " borrow " them,that they get

misplaced.I have also found that you are your best dr. and if you are

multiple swelling and pain,than that is what is going on,and they need

to respect what you are saying and treat you for those issues.If you are

not being validated in your medical care,that affects your mental

state,and i think we all know that affects to a certain point how our

bodies feel. I know for me,that

> i feel if my drs dont care,who is going to? So dont give up,there

are good drs out there,you just have to find the right one for you.

Sorry this is so long, but i have gone years without the proper medical

care,until the last 2 years,it is really hard . So hang in there.

> Lupie Hugs,

> Cheryl

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Share on other sites

Good ideas, Cheryl! Having good documentation, including photos, and

being fully portable is very important.

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

Re: [ ] Re: New and need advice.

>

>

> Hello,the rheum. team that i see is 4-5 hours out of state for me.So

what i have been doing is taking pictures for them.YOu can also do

this,for your dr to see and to keep a journal of your illness

progression.That way if you have to go the hospital,switch drs,or

whatever situation arises,you have your midical info with you. I also

keep copies of all my scans,and all blood work. If your foot swells one

day,take that foot pic and then next week take a pic of your finger and

take them the dr with you.but make sure you keep the pic. for yourself,i

have found that if you let the dr " borrow " them,that they get

misplaced.I have also found that you are your best dr. and if you are

multiple swelling and pain,than that is what is going on,and they need

to respect what you are saying and treat you for those issues.If you are

not being validated in your medical care,that affects your mental

state,and i think we all know that affects to a certain point how our

bodies feel. I know for me,that

> i feel if my drs dont care,who is going to? So dont give up,there

are good drs out there,you just have to find the right one for you.

Sorry this is so long, but i have gone years without the proper medical

care,until the last 2 years,it is really hard . So hang in there.

> Lupie Hugs,

> Cheryl

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