Re: intro and query re diagnosis and alternative approaches

[Guest guest]

Welcome Molly.

I've had seronegative RA since my early 20's and I'm now 51. I

started on medication right away, but then decided to try alternative

treatments. Throughout the years,

I've tried many alternative treatments, herbs, and diets. What worked

best for me was changing my diet and exercising. I regret going off

medications because the damage was being done to my joints and I was

clueless. For me, the combination of alternative and traditional has

been very effective. I hate taking the meds, but I can't afford to

loose any more joints. I've had both knees replaced and my ankles are

in dire need of replacing, but the success rate isn't so hot so I'm

holding off as long as I can. I was very uneducated back then about

the damage RA can do, including affect internal organs. I wish I

could find something that works as well as my medications. Have you

had x-rays done to see if your joints are eroding? Have you tried a

gluten free diet?

a

On Sep 28, 2005, at 1:50 PM, nostorystory wrote:

> Hello all,

> I have been following the list for a little while, and thought it was

> time to introduce myself. I apreciate this list and the courage and

> support expressed. I am 42 and have joint pain on and off over the

> years, and am currently in a particularly tough episode of knee pain,

> and sometimes hip and shoulder pain too for the last couple of years,

> and has become comepletely debilitating. My activity level has

> become greatly reduced, and now my muscles are atrophying, which

> can't be helping anything. My doctor is now considering a diagnosis

> of seronegative RA. There is a family history of RA. I don't know

> what to think. I'm not ready to try medication, and am trying a

> bunch of alternative approaches instead. I'm taking a million

> supplements, and seeing various healers. I'd be interested to know

> what others have tried. Has anyone tried Bioset? And how about

> detox foot baths? Thank you so much for this forum.

>

> Molly

>

>

>

>

>

[Guest guest]

Welcome Molly.

I've had seronegative RA since my early 20's and I'm now 51. I

started on medication right away, but then decided to try alternative

treatments. Throughout the years,

I've tried many alternative treatments, herbs, and diets. What worked

best for me was changing my diet and exercising. I regret going off

medications because the damage was being done to my joints and I was

clueless. For me, the combination of alternative and traditional has

been very effective. I hate taking the meds, but I can't afford to

loose any more joints. I've had both knees replaced and my ankles are

in dire need of replacing, but the success rate isn't so hot so I'm

holding off as long as I can. I was very uneducated back then about

the damage RA can do, including affect internal organs. I wish I

could find something that works as well as my medications. Have you

had x-rays done to see if your joints are eroding? Have you tried a

gluten free diet?

a

On Sep 28, 2005, at 1:50 PM, nostorystory wrote:

> Hello all,

> I have been following the list for a little while, and thought it was

> time to introduce myself. I apreciate this list and the courage and

> support expressed. I am 42 and have joint pain on and off over the

> years, and am currently in a particularly tough episode of knee pain,

> and sometimes hip and shoulder pain too for the last couple of years,

> and has become comepletely debilitating. My activity level has

> become greatly reduced, and now my muscles are atrophying, which

> can't be helping anything. My doctor is now considering a diagnosis

> of seronegative RA. There is a family history of RA. I don't know

> what to think. I'm not ready to try medication, and am trying a

> bunch of alternative approaches instead. I'm taking a million

> supplements, and seeing various healers. I'd be interested to know

> what others have tried. Has anyone tried Bioset? And how about

> detox foot baths? Thank you so much for this forum.

>

> Molly

>

>

>

>

>

[Guest guest]

Hi a,

Thanks for sharing about your experience, and that's a good warning

about the danger of not taking the medication. I'm sorry about the

consequences you've had to pay.

I'm pretty overwhelmed. My xrays were normal about a year ago. I'm

confused about how I know if I really have RA. The doc says the only

way to know is to go on the medication and see if I respond. It's my

general practitioner who has been wanting to treat me, and has

actually discouraged me from seeing a rheumatologist because he knows

I can't afford it very well, and says I won't really learn anything

more. But I can see that I am undereducated.

What internal organs are affected? My joint pain has usually been

bilateral and comes in waves and definitely at times when I've been

under particular stress, which sounds typical of the disease, but

it's never been in my hands which seems atypical from what I've read

on the internet. Typically I've just been diagnosed with things like

patellar tendinitis, rotator-cuff tendinitis, bursitis, and carpal

tunnel syndrome. This time, though, nothing seems to be helping my

knees, and they've just been getting worse.

No, I haven't tried a gluten-free diet. I've made all the other

dietary changes that are recommended, but haven't tried this one

yet. Regarding exercise, I'm utterly confounded. I've generally

been pretty much of an athlete, but am now wasting away and cannot

find a form of exercise that doesn't aggravate my condition. I walk

a little on the days I can, and that's about it. I'd swim if I could

find a pool not treated with chlorine or bromine, which I'm

spectacularly allergic to.

Thanks for listening!

Best,

Molly

On Sep 28, 2005, at 3:50 PM, a wrote:

> Welcome Molly.

>

> I've had seronegative RA since my early 20's and I'm now 51. I

> started on medication right away, but then decided to try alternative

> treatments. Throughout the years,

> I've tried many alternative treatments, herbs, and diets. What worked

> best for me was changing my diet and exercising. I regret going off

> medications because the damage was being done to my joints and I was

> clueless. For me, the combination of alternative and traditional has

> been very effective. I hate taking the meds, but I can't afford to

> loose any more joints. I've had both knees replaced and my ankles are

> in dire need of replacing, but the success rate isn't so hot so I'm

> holding off as long as I can. I was very uneducated back then about

> the damage RA can do, including affect internal organs. I wish I

> could find something that works as well as my medications. Have you

> had x-rays done to see if your joints are eroding? Have you tried a

> gluten free diet?

>

> a

>

>

> On Sep 28, 2005, at 1:50 PM, nostorystory wrote:

>

> > Hello all,

> > I have been following the list for a little while, and thought it

> was

> > time to introduce myself. I apreciate this list and the courage and

> > support expressed. I am 42 and have joint pain on and off over the

> > years, and am currently in a particularly tough episode of knee

> pain,

> > and sometimes hip and shoulder pain too for the last couple of

> years,

> > and has become comepletely debilitating. My activity level has

> > become greatly reduced, and now my muscles are atrophying, which

> > can't be helping anything. My doctor is now considering a diagnosis

> > of seronegative RA. There is a family history of RA. I don't know

> > what to think. I'm not ready to try medication, and am trying a

> > bunch of alternative approaches instead. I'm taking a million

> > supplements, and seeing various healers. I'd be interested to know

> > what others have tried. Has anyone tried Bioset? And how about

> > detox foot baths? Thank you so much for this forum.

> >

> > Molly

> >

> >

> >

> >

> >

[Guest guest]

Hi a,

Thanks for sharing about your experience, and that's a good warning

about the danger of not taking the medication. I'm sorry about the

consequences you've had to pay.

I'm pretty overwhelmed. My xrays were normal about a year ago. I'm

confused about how I know if I really have RA. The doc says the only

way to know is to go on the medication and see if I respond. It's my

general practitioner who has been wanting to treat me, and has

actually discouraged me from seeing a rheumatologist because he knows

I can't afford it very well, and says I won't really learn anything

more. But I can see that I am undereducated.

What internal organs are affected? My joint pain has usually been

bilateral and comes in waves and definitely at times when I've been

under particular stress, which sounds typical of the disease, but

it's never been in my hands which seems atypical from what I've read

on the internet. Typically I've just been diagnosed with things like

patellar tendinitis, rotator-cuff tendinitis, bursitis, and carpal

tunnel syndrome. This time, though, nothing seems to be helping my

knees, and they've just been getting worse.

No, I haven't tried a gluten-free diet. I've made all the other

dietary changes that are recommended, but haven't tried this one

yet. Regarding exercise, I'm utterly confounded. I've generally

been pretty much of an athlete, but am now wasting away and cannot

find a form of exercise that doesn't aggravate my condition. I walk

a little on the days I can, and that's about it. I'd swim if I could

find a pool not treated with chlorine or bromine, which I'm

spectacularly allergic to.

Thanks for listening!

Best,

Molly

On Sep 28, 2005, at 3:50 PM, a wrote:

> Welcome Molly.

>

> I've had seronegative RA since my early 20's and I'm now 51. I

> started on medication right away, but then decided to try alternative

> treatments. Throughout the years,

> I've tried many alternative treatments, herbs, and diets. What worked

> best for me was changing my diet and exercising. I regret going off

> medications because the damage was being done to my joints and I was

> clueless. For me, the combination of alternative and traditional has

> been very effective. I hate taking the meds, but I can't afford to

> loose any more joints. I've had both knees replaced and my ankles are

> in dire need of replacing, but the success rate isn't so hot so I'm

> holding off as long as I can. I was very uneducated back then about

> the damage RA can do, including affect internal organs. I wish I

> could find something that works as well as my medications. Have you

> had x-rays done to see if your joints are eroding? Have you tried a

> gluten free diet?

>

> a

>

>

> On Sep 28, 2005, at 1:50 PM, nostorystory wrote:

>

> > Hello all,

> > I have been following the list for a little while, and thought it

> was

> > time to introduce myself. I apreciate this list and the courage and

> > support expressed. I am 42 and have joint pain on and off over the

> > years, and am currently in a particularly tough episode of knee

> pain,

> > and sometimes hip and shoulder pain too for the last couple of

> years,

> > and has become comepletely debilitating. My activity level has

> > become greatly reduced, and now my muscles are atrophying, which

> > can't be helping anything. My doctor is now considering a diagnosis

> > of seronegative RA. There is a family history of RA. I don't know

> > what to think. I'm not ready to try medication, and am trying a

> > bunch of alternative approaches instead. I'm taking a million

> > supplements, and seeing various healers. I'd be interested to know

> > what others have tried. Has anyone tried Bioset? And how about

> > detox foot baths? Thank you so much for this forum.

> >

> > Molly

> >

> >

> >

> >

> >

[Guest guest]

Hi Molly,

My hands are not affected either, which has always made me question

my diagnosis as well. My feet are also not affected, although my

ankles are severely affected.

My toes are normal! For having this disease for 30 years, I find that

unbelievable. I've been to 7 rheumatologists in my lifetime and each

of them say that although it is uncommon for the hands not to be

affected, this disease affects us all differently. I am not

complaining that's for sure. One of my wrists shows erosion on x-ray

but it doesn't bother me. It's scary to know that my bones are

eroding and there isn't any pain to warn me. That is what is so scary

about this disease.

Now they are pushing for early treatment to minimize the permanent

damage that can happen.

RA is not just a disease of the joints, it is a systemic disease

meaning that it affects the whole body. Here is an excerpt from Medline:

Rheumatoid arthritis is not solely a disease of joint destruction. It

can involve almost all organs.

A life-threatening joint complication can occur when the cervical

spine becomes unstable as a result of RA.

Rheumatoid vasculitis (inflammation of the blood vessels) is a

serious , potentially life-threatening complication of RA. It can

lead to skin ulcerations and infections, bleeding stomach ulcers, and

nerve problems that cause pain, numbness, or tingling. Vasculitis may

also affect the brain, nerves, and heart, which can cause stroke,

heart attack, or heart failure.

RA may cause the the outer lining of the heart to swell

(pericarditis) and cause heart complications. Inflammation of heart

muscle, called myocarditis, can also develop. Both of these

conditions can lead to congestive heart failure.

http://www.nlm.nih.gov/medlineplus/ency/article/000431.htm

I don't want to scare you, but just let you know that untreated RA

can have some serious consequences. We've got several members that

have had organ involvement. This is my reasons for combining

alternative and traditional treatment. We all have to make our own

decisions as to what is the best treatment for us. I've met many

people that have decided to stay with alternative treatments.

GP's that are educated in the rheumatic diseases are capable of

treating RA, although most of them refer to rheumatologists. If you

have any question about your diagnosis, you really should see a

rheumatologist. There are over 100 different types of arthritis. Many

times a rheumatologist and a GP will work together, especially in

areas where there aren't a lot of rheumatologists. You can get

assistance with RA medications if you qualify.

What a shame that you are allergic to chlorine and bromine. Water

exercise is my salvation. I don't know what I'd do if I couldn't swim.

I don't know of any alternatives. Have you tried a barrier to

protect your skin? Here is one that is good for water:

http://www.skinfriendly.com/

I have a website for our group that has links to more information

about RA:

http://rheumatoid.arthritis.freehosting.net/

The link is at the bottom of every email.

a

On Sep 28, 2005, at 7:21 PM, nostorystory wrote:

> Hi a,

>

> Thanks for sharing about your experience, and that's a good warning

> about the danger of not taking the medication. I'm sorry about the

> consequences you've had to pay.

>

> I'm pretty overwhelmed. My xrays were normal about a year ago. I'm

> confused about how I know if I really have RA. The doc says the only

> way to know is to go on the medication and see if I respond. It's my

> general practitioner who has been wanting to treat me, and has

> actually discouraged me from seeing a rheumatologist because he knows

> I can't afford it very well, and says I won't really learn anything

> more. But I can see that I am undereducated.

>

> What internal organs are affected? My joint pain has usually been

> bilateral and comes in waves and definitely at times when I've been

> under particular stress, which sounds typical of the disease, but

> it's never been in my hands which seems atypical from what I've read

> on the internet. Typically I've just been diagnosed with things like

> patellar tendinitis, rotator-cuff tendinitis, bursitis, and carpal

> tunnel syndrome. This time, though, nothing seems to be helping my

> knees, and they've just been getting worse.

>

> No, I haven't tried a gluten-free diet. I've made all the other

> dietary changes that are recommended, but haven't tried this one

> yet. Regarding exercise, I'm utterly confounded. I've generally

> been pretty much of an athlete, but am now wasting away and cannot

> find a form of exercise that doesn't aggravate my condition. I walk

> a little on the days I can, and that's about it. I'd swim if I could

> find a pool not treated with chlorine or bromine, which I'm

> spectacularly allergic to.

>

> Thanks for listening!

>

> Best,

> Molly

[Guest guest]

Hi Molly,

My hands are not affected either, which has always made me question

my diagnosis as well. My feet are also not affected, although my

ankles are severely affected.

My toes are normal! For having this disease for 30 years, I find that

unbelievable. I've been to 7 rheumatologists in my lifetime and each

of them say that although it is uncommon for the hands not to be

affected, this disease affects us all differently. I am not

complaining that's for sure. One of my wrists shows erosion on x-ray

but it doesn't bother me. It's scary to know that my bones are

eroding and there isn't any pain to warn me. That is what is so scary

about this disease.

Now they are pushing for early treatment to minimize the permanent

damage that can happen.

RA is not just a disease of the joints, it is a systemic disease

meaning that it affects the whole body. Here is an excerpt from Medline:

Rheumatoid arthritis is not solely a disease of joint destruction. It

can involve almost all organs.

A life-threatening joint complication can occur when the cervical

spine becomes unstable as a result of RA.

Rheumatoid vasculitis (inflammation of the blood vessels) is a

serious , potentially life-threatening complication of RA. It can

lead to skin ulcerations and infections, bleeding stomach ulcers, and

nerve problems that cause pain, numbness, or tingling. Vasculitis may

also affect the brain, nerves, and heart, which can cause stroke,

heart attack, or heart failure.

RA may cause the the outer lining of the heart to swell

(pericarditis) and cause heart complications. Inflammation of heart

muscle, called myocarditis, can also develop. Both of these

conditions can lead to congestive heart failure.

http://www.nlm.nih.gov/medlineplus/ency/article/000431.htm

I don't want to scare you, but just let you know that untreated RA

can have some serious consequences. We've got several members that

have had organ involvement. This is my reasons for combining

alternative and traditional treatment. We all have to make our own

decisions as to what is the best treatment for us. I've met many

people that have decided to stay with alternative treatments.

GP's that are educated in the rheumatic diseases are capable of

treating RA, although most of them refer to rheumatologists. If you

have any question about your diagnosis, you really should see a

rheumatologist. There are over 100 different types of arthritis. Many

times a rheumatologist and a GP will work together, especially in

areas where there aren't a lot of rheumatologists. You can get

assistance with RA medications if you qualify.

What a shame that you are allergic to chlorine and bromine. Water

exercise is my salvation. I don't know what I'd do if I couldn't swim.

I don't know of any alternatives. Have you tried a barrier to

protect your skin? Here is one that is good for water:

http://www.skinfriendly.com/

I have a website for our group that has links to more information

about RA:

http://rheumatoid.arthritis.freehosting.net/

The link is at the bottom of every email.

a

On Sep 28, 2005, at 7:21 PM, nostorystory wrote:

> Hi a,

>

> Thanks for sharing about your experience, and that's a good warning

> about the danger of not taking the medication. I'm sorry about the

> consequences you've had to pay.

>

> I'm pretty overwhelmed. My xrays were normal about a year ago. I'm

> confused about how I know if I really have RA. The doc says the only

> way to know is to go on the medication and see if I respond. It's my

> general practitioner who has been wanting to treat me, and has

> actually discouraged me from seeing a rheumatologist because he knows

> I can't afford it very well, and says I won't really learn anything

> more. But I can see that I am undereducated.

>

> What internal organs are affected? My joint pain has usually been

> bilateral and comes in waves and definitely at times when I've been

> under particular stress, which sounds typical of the disease, but

> it's never been in my hands which seems atypical from what I've read

> on the internet. Typically I've just been diagnosed with things like

> patellar tendinitis, rotator-cuff tendinitis, bursitis, and carpal

> tunnel syndrome. This time, though, nothing seems to be helping my

> knees, and they've just been getting worse.

>

> No, I haven't tried a gluten-free diet. I've made all the other

> dietary changes that are recommended, but haven't tried this one

> yet. Regarding exercise, I'm utterly confounded. I've generally

> been pretty much of an athlete, but am now wasting away and cannot

> find a form of exercise that doesn't aggravate my condition. I walk

> a little on the days I can, and that's about it. I'd swim if I could

> find a pool not treated with chlorine or bromine, which I'm

> spectacularly allergic to.

>

> Thanks for listening!

>

> Best,

> Molly

[Guest guest]

Hi a and Molly,

I gave up allopathy to try non-allopathic treatment for a year, after my RA

symptoms started getting worse.

I tried herbal oil massages, steam baths, homeopathy, diets, ayurveda etc. But

it only made things worse. Allopathy has given me the most relief. I could walk

about and look after myself only after getting back on my allopathic drugs. But

during the period I was off the drugs my joints had already been damaged.

So I would agree with a when she says untreated RA can have some serious

consequences.

The drugs I take presently are:

Salazopyrin (Sulphasalazine) also called Sazo EN (Morning and night)

Hydroxy chloroquine sulphate (HCQS) (night)

Methotrexate (once a week)

Naproxen ( with Omez) (whenever I'm in pain, though I try to avoid taking this

if I can)

As for the exercise part. I can never get myself to exercise but I've noticed

that a few simple slow stretching exercises of joints that can be submerged in a

warm bath/basin :-) are very helpful.

Take care Molly and thanks a for all the information.

Regards,

a

a <a54@...> wrote:

Hi Molly,

My hands are not affected either, which has always made me question

my diagnosis as well. My feet are also not affected, although my

ankles are severely affected.

My toes are normal! For having this disease for 30 years, I find that

unbelievable. I've been to 7 rheumatologists in my lifetime and each

of them say that although it is uncommon for the hands not to be

affected, this disease affects us all differently. I am not

complaining that's for sure. One of my wrists shows erosion on x-ray

but it doesn't bother me. It's scary to know that my bones are

eroding and there isn't any pain to warn me. That is what is so scary

about this disease.

Now they are pushing for early treatment to minimize the permanent

damage that can happen.

RA is not just a disease of the joints, it is a systemic disease

meaning that it affects the whole body. Here is an excerpt from Medline:

Rheumatoid arthritis is not solely a disease of joint destruction. It

can involve almost all organs.

A life-threatening joint complication can occur when the cervical

spine becomes unstable as a result of RA.

Rheumatoid vasculitis (inflammation of the blood vessels) is a

serious , potentially life-threatening complication of RA. It can

lead to skin ulcerations and infections, bleeding stomach ulcers, and

nerve problems that cause pain, numbness, or tingling. Vasculitis may

also affect the brain, nerves, and heart, which can cause stroke,

heart attack, or heart failure.

RA may cause the the outer lining of the heart to swell

(pericarditis) and cause heart complications. Inflammation of heart

muscle, called myocarditis, can also develop. Both of these

conditions can lead to congestive heart failure.

http://www.nlm.nih.gov/medlineplus/ency/article/000431.htm

I don't want to scare you, but just let you know that untreated RA

can have some serious consequences. We've got several members that

have had organ involvement. This is my reasons for combining

alternative and traditional treatment. We all have to make our own

decisions as to what is the best treatment for us. I've met many

people that have decided to stay with alternative treatments.

GP's that are educated in the rheumatic diseases are capable of

treating RA, although most of them refer to rheumatologists. If you

have any question about your diagnosis, you really should see a

rheumatologist. There are over 100 different types of arthritis. Many

times a rheumatologist and a GP will work together, especially in

areas where there aren't a lot of rheumatologists. You can get

assistance with RA medications if you qualify.

What a shame that you are allergic to chlorine and bromine. Water

exercise is my salvation. I don't know what I'd do if I couldn't swim.

I don't know of any alternatives. Have you tried a barrier to

protect your skin? Here is one that is good for water:

http://www.skinfriendly.com/

I have a website for our group that has links to more information

about RA:

http://rheumatoid.arthritis.freehosting.net/

The link is at the bottom of every email.

a

On Sep 28, 2005, at 7:21 PM, nostorystory wrote:

> Hi a,

>

> Thanks for sharing about your experience, and that's a good warning

> about the danger of not taking the medication. I'm sorry about the

> consequences you've had to pay.

>

> I'm pretty overwhelmed. My xrays were normal about a year ago. I'm

> confused about how I know if I really have RA. The doc says the only

> way to know is to go on the medication and see if I respond. It's my

> general practitioner who has been wanting to treat me, and has

> actually discouraged me from seeing a rheumatologist because he knows

> I can't afford it very well, and says I won't really learn anything

> more. But I can see that I am undereducated.

>

> What internal organs are affected? My joint pain has usually been

> bilateral and comes in waves and definitely at times when I've been

> under particular stress, which sounds typical of the disease, but

> it's never been in my hands which seems atypical from what I've read

> on the internet. Typically I've just been diagnosed with things like

> patellar tendinitis, rotator-cuff tendinitis, bursitis, and carpal

> tunnel syndrome. This time, though, nothing seems to be helping my

> knees, and they've just been getting worse.

>

> No, I haven't tried a gluten-free diet. I've made all the other

> dietary changes that are recommended, but haven't tried this one

> yet. Regarding exercise, I'm utterly confounded. I've generally

> been pretty much of an athlete, but am now wasting away and cannot

> find a form of exercise that doesn't aggravate my condition. I walk

> a little on the days I can, and that's about it. I'd swim if I could

> find a pool not treated with chlorine or bromine, which I'm

> spectacularly allergic to.

>

> Thanks for listening!

>

> Best,

> Molly

[Guest guest]

Hi a and Molly,

I gave up allopathy to try non-allopathic treatment for a year, after my RA

symptoms started getting worse.

I tried herbal oil massages, steam baths, homeopathy, diets, ayurveda etc. But

it only made things worse. Allopathy has given me the most relief. I could walk

about and look after myself only after getting back on my allopathic drugs. But

during the period I was off the drugs my joints had already been damaged.

So I would agree with a when she says untreated RA can have some serious

consequences.

The drugs I take presently are:

Salazopyrin (Sulphasalazine) also called Sazo EN (Morning and night)

Hydroxy chloroquine sulphate (HCQS) (night)

Methotrexate (once a week)

Naproxen ( with Omez) (whenever I'm in pain, though I try to avoid taking this

if I can)

As for the exercise part. I can never get myself to exercise but I've noticed

that a few simple slow stretching exercises of joints that can be submerged in a

warm bath/basin :-) are very helpful.

Take care Molly and thanks a for all the information.

Regards,

a

a <a54@...> wrote:

Hi Molly,

My hands are not affected either, which has always made me question

my diagnosis as well. My feet are also not affected, although my

ankles are severely affected.

My toes are normal! For having this disease for 30 years, I find that

unbelievable. I've been to 7 rheumatologists in my lifetime and each

of them say that although it is uncommon for the hands not to be

affected, this disease affects us all differently. I am not

complaining that's for sure. One of my wrists shows erosion on x-ray

but it doesn't bother me. It's scary to know that my bones are

eroding and there isn't any pain to warn me. That is what is so scary

about this disease.

Now they are pushing for early treatment to minimize the permanent

damage that can happen.

RA is not just a disease of the joints, it is a systemic disease

meaning that it affects the whole body. Here is an excerpt from Medline:

Rheumatoid arthritis is not solely a disease of joint destruction. It

can involve almost all organs.

A life-threatening joint complication can occur when the cervical

spine becomes unstable as a result of RA.

Rheumatoid vasculitis (inflammation of the blood vessels) is a

serious , potentially life-threatening complication of RA. It can

lead to skin ulcerations and infections, bleeding stomach ulcers, and

nerve problems that cause pain, numbness, or tingling. Vasculitis may

also affect the brain, nerves, and heart, which can cause stroke,

heart attack, or heart failure.

RA may cause the the outer lining of the heart to swell

(pericarditis) and cause heart complications. Inflammation of heart

muscle, called myocarditis, can also develop. Both of these

conditions can lead to congestive heart failure.

http://www.nlm.nih.gov/medlineplus/ency/article/000431.htm

I don't want to scare you, but just let you know that untreated RA

can have some serious consequences. We've got several members that

have had organ involvement. This is my reasons for combining

alternative and traditional treatment. We all have to make our own

decisions as to what is the best treatment for us. I've met many

people that have decided to stay with alternative treatments.

GP's that are educated in the rheumatic diseases are capable of

treating RA, although most of them refer to rheumatologists. If you

have any question about your diagnosis, you really should see a

rheumatologist. There are over 100 different types of arthritis. Many

times a rheumatologist and a GP will work together, especially in

areas where there aren't a lot of rheumatologists. You can get

assistance with RA medications if you qualify.

What a shame that you are allergic to chlorine and bromine. Water

exercise is my salvation. I don't know what I'd do if I couldn't swim.

I don't know of any alternatives. Have you tried a barrier to

protect your skin? Here is one that is good for water:

http://www.skinfriendly.com/

I have a website for our group that has links to more information

about RA:

http://rheumatoid.arthritis.freehosting.net/

The link is at the bottom of every email.

a

On Sep 28, 2005, at 7:21 PM, nostorystory wrote:

> Hi a,

>

> Thanks for sharing about your experience, and that's a good warning

> about the danger of not taking the medication. I'm sorry about the

> consequences you've had to pay.

>

> I'm pretty overwhelmed. My xrays were normal about a year ago. I'm

> confused about how I know if I really have RA. The doc says the only

> way to know is to go on the medication and see if I respond. It's my

> general practitioner who has been wanting to treat me, and has

> actually discouraged me from seeing a rheumatologist because he knows

> I can't afford it very well, and says I won't really learn anything

> more. But I can see that I am undereducated.

>

> What internal organs are affected? My joint pain has usually been

> bilateral and comes in waves and definitely at times when I've been

> under particular stress, which sounds typical of the disease, but

> it's never been in my hands which seems atypical from what I've read

> on the internet. Typically I've just been diagnosed with things like

> patellar tendinitis, rotator-cuff tendinitis, bursitis, and carpal

> tunnel syndrome. This time, though, nothing seems to be helping my

> knees, and they've just been getting worse.

>

> No, I haven't tried a gluten-free diet. I've made all the other

> dietary changes that are recommended, but haven't tried this one

> yet. Regarding exercise, I'm utterly confounded. I've generally

> been pretty much of an athlete, but am now wasting away and cannot

> find a form of exercise that doesn't aggravate my condition. I walk

> a little on the days I can, and that's about it. I'd swim if I could

> find a pool not treated with chlorine or bromine, which I'm

> spectacularly allergic to.

>

> Thanks for listening!

>

> Best,

> Molly