Re: Fibromyalgia question/ NEED answer HELP getting worse

[Guest guest]

Absolutely!!!! Hi EVERYONE and thank Kim you for this post since I have been

on the edge of despair. I am replying to your post but wish to have this go

to the whole group and can't remember how to do this. I was diagnosed with

Degenerative disc disease and RA ( which I had to diagnose myself on the

Internet like you because my GP was an egomaniac and totally unconcerned about

everything. I was a schoolteacher and in 8/14/98 I blew two discs and could not

make my feet work from the knees down, had terrible sciatica pain etc....

could not stop working my GP prescribed pain meds and Celebrex, then VIox then

Bextra pain meds went from Tylenol 3 to Oxycontin 80 milligrams 3 times a day.

in March of 99 I finally went to a neorologist and had two discs removed in

the lower lumbar L$-L5. L5,S1. I went on disability but the pain after the

operations continued and I was having pain in my hands and feet, joint swelling

, fatigue. I read and researched on the Internet and finally dx myself with

RA. I have been to 2 rheumy's since but my luck with them has been dismal

the first one moved and the second one quit. Both agreed I had RA. I have been

on Plaquenil, predisone MTX folic Acid, Neurontin, and Oxycontin, and then I

moved to a different part of FL. I had a baby at 36 and went into remission

until he was 11 months old Then it all came back with a vengeance. My

multiple MRI's since have shown major degenerative changes throughout all 3

levels

of the back especially the cervical spine. I have multiple herniated and

bulged discs now have been diagnosed with post lamenectomy syndrome and joint

facet disease. At this point in 99 I was referred to pain management. I am now

on

5/ 80 mlg. Oxycontin a day! When I turned 40 last February my health

progressively has gotten worse. I have moved so now this month need to find all

new

doctors. Good riddance to my GP but my Pain Management doctor will continue

working with me except I have to drive 8 hours every six weeks and can't do

this anymore. Since the beginning of this year I found a DO ( so he can't

prescribe pain meds but is by far a better doctor than the one i was with for

13

years) My breathing had become labored I was not only feeling joint pain and

localized swelling but I started suffering from severe generalized edema, my

ribs began to hurt and I began suffering from excruciating feet pain and knee

pain that was making it almost impossible to walk even with the pain meds. I

thought this was just the RA progressing because by now I had run out of all

my RA medications since I had only a six month supply of refills from when I

left the Keys and the doctor that just quit. I also began suffering from

extreme pain in my shoulders and upper arms , migraines,,,,,, I thought this

could be from the degenerative changes in my neck but the pain is in my muscles

and these areas ( now also along the calves) is hardening and always

swollen.My chest began to hurt more and more where my lungs are. In the last

week they

have found that my thyroid was not working ( which I have read could be

caused from an auto-immune disorder especially when others are present.) My

carteroid artery has a 20% obstruction of plaque?, my lung x-ray was abnormal

showing multiple nodules and small airway disease in the lower right lobe. I

had a CT Scan which was also abnormal showing a granuloma between both lungs

nodules that have to be watched in the right upper lobe and a full hilum. II

was not receiving enough O2 into the blood stream now I am on O2 8 hours a

night , nebulizer 4 times a day. The daignosis has been COPD but i have not

suffered from bronchitis for a three month periods for two consecutive years in

a

row and this is how COPD is diagnosed. My liver has a high level of enzymes (

good thing I ran out of the MTX -after all these years on it I was never

checked for liver enzymes by either rheumy or GP and my eyes have never been

checked and should be since I am Plaquenil. They have also found that my liver

in enlarged. I am sorry to have rambled on so much but I am very frightened. I

have been referred to a rheumy and to Pain Management but it will be over a

month before I can get in to either ( AT least) I am only on Medicare and

have no idea how I am going to pay for all of these meds and I am concerned

that

I have fibro and perhaps Sarcodosis as well. My husband is also disabled

with severe degenerative disc disease, and schlederma. If anyone has any ideas

please let me know????? Kim I had to write you because I believe it is very

important to become involved as you did in your own treatment especially when

you know your doctors are failing to treat you. I am encouraged that you

finally found great one I wish you could clone him also. I am very discouraged

and so far except for this new DO have had very poor luck with doctors in

general. I have a 3 year old son that has two parents with auto-immune disease

and

my husbands sister has lupus. I know I have just whined but if anyone has

any answers I really need them.

I am so glad this group exists , it has kept me going like nothing else.

thanks,

Jacquie

[Guest guest]

Absolutely!!!! Hi EVERYONE and thank Kim you for this post since I have been

on the edge of despair. I am replying to your post but wish to have this go

to the whole group and can't remember how to do this. I was diagnosed with

Degenerative disc disease and RA ( which I had to diagnose myself on the

Internet like you because my GP was an egomaniac and totally unconcerned about

everything. I was a schoolteacher and in 8/14/98 I blew two discs and could not

make my feet work from the knees down, had terrible sciatica pain etc....

could not stop working my GP prescribed pain meds and Celebrex, then VIox then

Bextra pain meds went from Tylenol 3 to Oxycontin 80 milligrams 3 times a day.

in March of 99 I finally went to a neorologist and had two discs removed in

the lower lumbar L$-L5. L5,S1. I went on disability but the pain after the

operations continued and I was having pain in my hands and feet, joint swelling

, fatigue. I read and researched on the Internet and finally dx myself with

RA. I have been to 2 rheumy's since but my luck with them has been dismal

the first one moved and the second one quit. Both agreed I had RA. I have been

on Plaquenil, predisone MTX folic Acid, Neurontin, and Oxycontin, and then I

moved to a different part of FL. I had a baby at 36 and went into remission

until he was 11 months old Then it all came back with a vengeance. My

multiple MRI's since have shown major degenerative changes throughout all 3

levels

of the back especially the cervical spine. I have multiple herniated and

bulged discs now have been diagnosed with post lamenectomy syndrome and joint

facet disease. At this point in 99 I was referred to pain management. I am now

on

5/ 80 mlg. Oxycontin a day! When I turned 40 last February my health

progressively has gotten worse. I have moved so now this month need to find all

new

doctors. Good riddance to my GP but my Pain Management doctor will continue

working with me except I have to drive 8 hours every six weeks and can't do

this anymore. Since the beginning of this year I found a DO ( so he can't

prescribe pain meds but is by far a better doctor than the one i was with for

13

years) My breathing had become labored I was not only feeling joint pain and

localized swelling but I started suffering from severe generalized edema, my

ribs began to hurt and I began suffering from excruciating feet pain and knee

pain that was making it almost impossible to walk even with the pain meds. I

thought this was just the RA progressing because by now I had run out of all

my RA medications since I had only a six month supply of refills from when I

left the Keys and the doctor that just quit. I also began suffering from

extreme pain in my shoulders and upper arms , migraines,,,,,, I thought this

could be from the degenerative changes in my neck but the pain is in my muscles

and these areas ( now also along the calves) is hardening and always

swollen.My chest began to hurt more and more where my lungs are. In the last

week they

have found that my thyroid was not working ( which I have read could be

caused from an auto-immune disorder especially when others are present.) My

carteroid artery has a 20% obstruction of plaque?, my lung x-ray was abnormal

showing multiple nodules and small airway disease in the lower right lobe. I

had a CT Scan which was also abnormal showing a granuloma between both lungs

nodules that have to be watched in the right upper lobe and a full hilum. II

was not receiving enough O2 into the blood stream now I am on O2 8 hours a

night , nebulizer 4 times a day. The daignosis has been COPD but i have not

suffered from bronchitis for a three month periods for two consecutive years in

a

row and this is how COPD is diagnosed. My liver has a high level of enzymes (

good thing I ran out of the MTX -after all these years on it I was never

checked for liver enzymes by either rheumy or GP and my eyes have never been

checked and should be since I am Plaquenil. They have also found that my liver

in enlarged. I am sorry to have rambled on so much but I am very frightened. I

have been referred to a rheumy and to Pain Management but it will be over a

month before I can get in to either ( AT least) I am only on Medicare and

have no idea how I am going to pay for all of these meds and I am concerned

that

I have fibro and perhaps Sarcodosis as well. My husband is also disabled

with severe degenerative disc disease, and schlederma. If anyone has any ideas

please let me know????? Kim I had to write you because I believe it is very

important to become involved as you did in your own treatment especially when

you know your doctors are failing to treat you. I am encouraged that you

finally found great one I wish you could clone him also. I am very discouraged

and so far except for this new DO have had very poor luck with doctors in

general. I have a 3 year old son that has two parents with auto-immune disease

and

my husbands sister has lupus. I know I have just whined but if anyone has

any answers I really need them.

I am so glad this group exists , it has kept me going like nothing else.

thanks,

Jacquie

[Guest guest]

HI Jacquie,

Wow, you have been and are really going thru it! whew...

Don't dispair, there are people on this list who are very caring,

they understand the need to vent and whine. :-)

Medicare should pay for your mediciation?

Check into it.

It pays for my mom's. She has a degenerating bone disease that is

crumbling her spine. Every 6 weeks she goes to a neurologist that

gives her a shot in her spine that blocks the pain. She's in her 70's.

When listening to all the medication that everyone is on, and having

studied as much info on the internet about pain trying to understand

my FIBro, I'm wondering if your systems have gotten caught up in

the " pain loop " . Each individual sypmtom is being treated but not

the body as a " whole " .

It's like when I was in the Emergency room with that blinding

Migraine and the dr. thru up his hands and said he couldn't help me

after giving me some sort of narcotic pain shot that was supposed to

stop the pain. He asked, " on a scale of 1-10 how bad is the pain

now? " I could only whisper, " an 8 maybe..... "

It is like when the body gets hooked on Tylenol. You start out

taking one for the pain but then in a few weeks you find that only

one pill isn't working enough so you have to take two and then it

becomes even more often.

No, don't misunderstand me! Don't quit taking all your pills, I'm not

a dr.

But there are mornings that I look at all those bottles and gag at

thinking how much medication I'm taking.

A pill for the tyriod, a pill for the estrogen, a horse pill of

Magnesium w/Malic Acid to help with the Fibro, Percogesic if a

migrain is coming on or FIbro pain, a B-complex to give me energy to

get thru the day..... etc.

When Vioxx,Celebrex, antidepressants, and other narcotic pain killers

didn't work I quit taking those, so that isn't in the list.....

I guess what I'm saying is that the Body will get caught in the pain

loop and then it requires more and more to relieve the pain.

At what point do we say " wait a minute this is too much? "

I took all the bottles of what I was taking to my dr. and he shook

his head.

I wonder if drs. sometimes forget what they've prescribed and just

keep handing out pills.....

When are they going to start looking at healthier stuff to treat us

with, instead of handing us the latest chemicle on the market?

Eventually, the body says enough! And then different organs start

shutting down, like my thyroid and then last year my gallbladder said

enough and it quit too..... yah surgery. Then you have to worry about

a new diet because you don't have a galbladder to process a fatty

diet.....

There are days that I feel like my liver is getting toxic and one of

the tricks we learned while living overseas is that Schweeps Tonic

Water with Quinine, acts as a " liver scrubber " , to help get rid of

that liver pain. It is an acquired taste that if you add lime or

lemon juice to the Tonic water, it is easier to get used to.

It helps me anyway.

I've read on here where many of us have children that are having to

watch us go thru all this pain and health problems....

Do you ever see that worried look in your child's eyes? How are they

dealing with it?

How do we make sure our children's health doesn't get as bad off as

we are? Since they are genetically predisposed to this too?

I don't know if that question made sense or not...

Sorry, Fibro brain fog is setting in because we have a storm comming

in....possible snow for the next 3 days.

Our bodies are fearfully and wonderfully made.... but they weren't

made to handle all these pharmacy-man-chemicles...

Don't get me wrong, I am thankful for medical science and the

benefits that it has provided. But again, it is a " science " , instant

medicine isn't the only way to cure a sick body, and we have to keep

searching for what the real cure can be and not just keep treating

individual symptoms. I want a dr. that looks at the " whole " body.

Which is how my dr that I have now treats me.

Why can't all Drs be like that? If I treat you for this symptom, then

this organ is going to react like this, so we might have to look at

this down the road......

Ok I've ranted enough.

Until, Kim-Singditty

> Absolutely!!!! Hi EVERYONE and thank Kim you for this post since I

have been on the edge of despair. I am replying to your post but wish

to have this go to the whole group and can't remember how to do

this. I was diagnosed with Degenerative disc disease and RA ( which

I had to diagnose myself on the Internet like you because my GP was

an egomaniac and totally unconcerned about everything. I was a

schoolteacher and in 8/14/98 I blew two discs and could not

> make my feet work from the knees down, had terrible sciatica pain

etc....

{cut snip to shorten message space.}

>I have a 3 year old son that has two parents with auto->immune

disease and my husbands sister has lupus. I know I have just whined

but if anyone has any answers I really need them.

> I am so glad this group exists , it has kept me going like nothing

else.

> thanks,Jacquie

[Guest guest]

HI Jacquie,

Wow, you have been and are really going thru it! whew...

Don't dispair, there are people on this list who are very caring,

they understand the need to vent and whine. :-)

Medicare should pay for your mediciation?

Check into it.

It pays for my mom's. She has a degenerating bone disease that is

crumbling her spine. Every 6 weeks she goes to a neurologist that

gives her a shot in her spine that blocks the pain. She's in her 70's.

When listening to all the medication that everyone is on, and having

studied as much info on the internet about pain trying to understand

my FIBro, I'm wondering if your systems have gotten caught up in

the " pain loop " . Each individual sypmtom is being treated but not

the body as a " whole " .

It's like when I was in the Emergency room with that blinding

Migraine and the dr. thru up his hands and said he couldn't help me

after giving me some sort of narcotic pain shot that was supposed to

stop the pain. He asked, " on a scale of 1-10 how bad is the pain

now? " I could only whisper, " an 8 maybe..... "

It is like when the body gets hooked on Tylenol. You start out

taking one for the pain but then in a few weeks you find that only

one pill isn't working enough so you have to take two and then it

becomes even more often.

No, don't misunderstand me! Don't quit taking all your pills, I'm not

a dr.

But there are mornings that I look at all those bottles and gag at

thinking how much medication I'm taking.

A pill for the tyriod, a pill for the estrogen, a horse pill of

Magnesium w/Malic Acid to help with the Fibro, Percogesic if a

migrain is coming on or FIbro pain, a B-complex to give me energy to

get thru the day..... etc.

When Vioxx,Celebrex, antidepressants, and other narcotic pain killers

didn't work I quit taking those, so that isn't in the list.....

I guess what I'm saying is that the Body will get caught in the pain

loop and then it requires more and more to relieve the pain.

At what point do we say " wait a minute this is too much? "

I took all the bottles of what I was taking to my dr. and he shook

his head.

I wonder if drs. sometimes forget what they've prescribed and just

keep handing out pills.....

When are they going to start looking at healthier stuff to treat us

with, instead of handing us the latest chemicle on the market?

Eventually, the body says enough! And then different organs start

shutting down, like my thyroid and then last year my gallbladder said

enough and it quit too..... yah surgery. Then you have to worry about

a new diet because you don't have a galbladder to process a fatty

diet.....

There are days that I feel like my liver is getting toxic and one of

the tricks we learned while living overseas is that Schweeps Tonic

Water with Quinine, acts as a " liver scrubber " , to help get rid of

that liver pain. It is an acquired taste that if you add lime or

lemon juice to the Tonic water, it is easier to get used to.

It helps me anyway.

I've read on here where many of us have children that are having to

watch us go thru all this pain and health problems....

Do you ever see that worried look in your child's eyes? How are they

dealing with it?

How do we make sure our children's health doesn't get as bad off as

we are? Since they are genetically predisposed to this too?

I don't know if that question made sense or not...

Sorry, Fibro brain fog is setting in because we have a storm comming

in....possible snow for the next 3 days.

Our bodies are fearfully and wonderfully made.... but they weren't

made to handle all these pharmacy-man-chemicles...

Don't get me wrong, I am thankful for medical science and the

benefits that it has provided. But again, it is a " science " , instant

medicine isn't the only way to cure a sick body, and we have to keep

searching for what the real cure can be and not just keep treating

individual symptoms. I want a dr. that looks at the " whole " body.

Which is how my dr that I have now treats me.

Why can't all Drs be like that? If I treat you for this symptom, then

this organ is going to react like this, so we might have to look at

this down the road......

Ok I've ranted enough.

Until, Kim-Singditty

> Absolutely!!!! Hi EVERYONE and thank Kim you for this post since I

have been on the edge of despair. I am replying to your post but wish

to have this go to the whole group and can't remember how to do

this. I was diagnosed with Degenerative disc disease and RA ( which

I had to diagnose myself on the Internet like you because my GP was

an egomaniac and totally unconcerned about everything. I was a

schoolteacher and in 8/14/98 I blew two discs and could not

> make my feet work from the knees down, had terrible sciatica pain

etc....

{cut snip to shorten message space.}

>I have a 3 year old son that has two parents with auto->immune

disease and my husbands sister has lupus. I know I have just whined

but if anyone has any answers I really need them.

> I am so glad this group exists , it has kept me going like nothing

else.

> thanks,Jacquie