Re: Hi, I'm new here too...need insight too

[Guest guest]

Hi! Welcome to the group! Sorry to hear about the DX's. How long has all of

this been going on? What does your doc attribute the problems in your cervical

area to? Is it from the Lupus? I'm still relatively new on stuff. I have the

same problems with my neck. Bulging discs, ostepophytes, soft mass over C6,

never had an odontoid view ever turn out right, intracranial calcification, and

my favorite..a " radiopaque geometric foreign object over C3 " , but, it isn't

suppose to bother me!!!!!!!!!!!!!!!! I have bouts with pain often and try to

change things throughout the house to ease some of the stress I put my neck

through. Washing dishes tends to aggravate it (dishwasher would remedy that)

Moved all heavier objects like plates etc lower since overhead lifting is uhm ,

difficult if not impossible at times! I buy things in bulk so I keep smaller

containers on hand and have someone transfer it to them. On and on! I am not

familair with Vitamin IV therapy? I am a resident

at PT, just can't pick up my mail there for some reason? I can't imagine being

in the kind of pain you are describing while taking pain meds.? I can't take

any, myself but - I wish they were more helpful for you! I have taken Ambien, I

know for a lot of people it seems to work well. I react to meds. weird though.

Maybe with you feeling better at night, your cycle is just different hours. As

for myself, I get up anywhere from 5 - 6 a.m. and by 1 p.m. for sure, I'm done

fatigue wise anyhow - on my " bad " days it could be as early as 9 a.m.! Hate

those days, I always feel like a slug or something. Do you have a rheumy? Are

you being treated by one or your reg. doc.? Moving around helps me in the long

run, I go to my local Y.M.C.A. therapy pool to just move around and it does

work! It is hard to go though sometimes but I just do what I can! Some days

are better than others! I hope that someone can get back to you soon. Sorry, I

couldn't be much more help! Someone will be

able to help you more! Hang in there and welcome! Take care. Kim

lavndr32 <lavndr32@...> wrote: I have Fibro, Lupus, and 3 bulging ervical

disks (they say from my

cartilage disintegrating basically). I'm seeing a pain management

specialist and receiving Vitamin IV Therapy for energy, PT for trying

to strengthen muscles, Davrocet (not working) Tramadol (causing

swelling) Lunesta (still not sleeping) Skelaxin (who knows...) they're

considering putting me on a morphine trial pump but I'm 35 and feel

I'm too young for such drastic measures, yet I'm in pain.

I also seem to be noticing something very wierd and would like to kow

if anyone has insight? I seem to be noticing that I have no energy

during the day at all. NONE..an dyet I can't sleep at night. However,

I've noticed that my energy increases after the sun sets, my pain

lessens, I'm fully awake and ready to go. It's been very weird.

[Guest guest]

Welcome to the group. Im fairly new to it myself (but

not R.A.). Sounds like you've got things going on that

I am not familiar with, but I can guarantee, some

people here are. I'm continually amazed at the

knowledge and experience that's been shared here. One

thing I do identify with is finally getting your

energy at night. Im always frusterated by this too.

And it is a little discouraging going to bed. It's

like you spend your whole day losing up, and once your

there, it's time to go to sleep and get all stiff

again. The vampire side-effect I didnt realize anyone

else had.

Good luck, and I really hope you feel better.

--- Barbara Sue <kickstandgranny@...>

wrote:

> Hi! Welcome to the group! Sorry to hear about the

> DX's. How long has all of this been going on? What

> does your doc attribute the problems in your

> cervical area to? Is it from the Lupus? I'm still

> relatively new on stuff. I have the same problems

> with my neck. Bulging discs, ostepophytes, soft

> mass over C6, never had an odontoid view ever turn

> out right, intracranial calcification, and my

> favorite..a " radiopaque geometric foreign object

> over C3 " , but, it isn't suppose to bother

> me!!!!!!!!!!!!!!!! I have bouts with pain often and

> try to change things throughout the house to ease

> some of the stress I put my neck through. Washing

> dishes tends to aggravate it (dishwasher would

> remedy that) Moved all heavier objects like plates

> etc lower since overhead lifting is uhm , difficult

> if not impossible at times! I buy things in bulk so

> I keep smaller containers on hand and have someone

> transfer it to them. On and on! I am not familair

> with Vitamin IV therapy? I am a resident

> at PT, just can't pick up my mail there for some

> reason? I can't imagine being in the kind of pain

> you are describing while taking pain meds.? I can't

> take any, myself but - I wish they were more helpful

> for you! I have taken Ambien, I know for a lot of

> people it seems to work well. I react to meds.

> weird though. Maybe with you feeling better at

> night, your cycle is just different hours. As for

> myself, I get up anywhere from 5 - 6 a.m. and by 1

> p.m. for sure, I'm done fatigue wise anyhow - on my

> " bad " days it could be as early as 9 a.m.! Hate

> those days, I always feel like a slug or something.

> Do you have a rheumy? Are you being treated by one

> or your reg. doc.? Moving around helps me in the

> long run, I go to my local Y.M.C.A. therapy pool to

> just move around and it does work! It is hard to go

> though sometimes but I just do what I can! Some

> days are better than others! I hope that someone can

> get back to you soon. Sorry, I couldn't be much

> more help! Someone will be

> able to help you more! Hang in there and welcome!

> Take care. Kim

>

> lavndr32 <lavndr32@...> wrote: I have Fibro,

> Lupus, and 3 bulging ervical disks (they say from my

>

> cartilage disintegrating basically). I'm seeing a

> pain management

> specialist and receiving Vitamin IV Therapy for

> energy, PT for trying

> to strengthen muscles, Davrocet (not working)

> Tramadol (causing

> swelling) Lunesta (still not sleeping) Skelaxin (who

> knows...) they're

> considering putting me on a morphine trial pump but

> I'm 35 and feel

> I'm too young for such drastic measures, yet I'm in

> pain.

> I also seem to be noticing something very wierd and

> would like to kow

> if anyone has insight? I seem to be noticing that I

> have no energy

> during the day at all. NONE..an dyet I can't sleep

> at night. However,

> I've noticed that my energy increases after the sun

> sets, my pain

> lessens, I'm fully awake and ready to go. It's been

> very weird.

>

>

>

>

>

>

>

>

[Guest guest]

Hi Lavndr..thanks for the response.

To make it short.........I was diagnosed with RA last September. Was on

Prednisone for 2 months. Rhummy wanted me to go on Methatrex, but i balked. Went

off Pred. and have tried homeopathic and acupuncture for the last 3 months. Has

given some relief. But the flareups are very painful. Will be going back to

Rhummy on Thur. this week and am trying to make a decision as to wether or not

to do Methx. I have read a lot and have looked at some of these emails and

wonder what to do. Seems even when people are on high powered drugs they still

are looking for pain relief. I find that two beers in the afternoon helps me

deal with the pain if Aleeve or Tynenol Arth. does not kick in.(I switch between

the two). So which way to ruin my liver? Wild-K

[ ] Hi, I'm new here too...need insight too

I have Fibro, Lupus, and 3 bulging ervical disks (they say from my

cartilage disintegrating basically). I'm seeing a pain management

specialist and receiving Vitamin IV Therapy for energy, PT for trying

to strengthen muscles, Davrocet (not working) Tramadol (causing

swelling) Lunesta (still not sleeping) Skelaxin (who knows...) they're

considering putting me on a morphine trial pump but I'm 35 and feel

I'm too young for such drastic measures, yet I'm in pain.

I also seem to be noticing something very wierd and would like to kow

if anyone has insight? I seem to be noticing that I have no energy

during the day at all. NONE..an dyet I can't sleep at night. However,

I've noticed that my energy increases after the sun sets, my pain

lessens, I'm fully awake and ready to go. It's been very weird.

[Guest guest]

In a message dated 5/1/06 5:09:33 PM, Wildkard@... writes:

> eems even when people are on high powered drugs they still are looking for

> pain relief. I find that two beers in the afternoon helps me deal with the

> pain if Aleeve or Tynenol Arth. does not kick in.(I switch between the two).

So

> which way to ruin my liver? Wild-K

>

Get bloodtested every 2 months if you are on strong drugs....... I don't

think 2 beers will hurt your liver...it hasn't hurt mine, and I have been

drinking 2 every night for years!!

Pris

[Guest guest]

My diagnosis came 6 years ago. I, too, balked--big time--at taking the

regular meds. I embarked on a quest in alternative medicine and--to

make a long story short--found help that way with pain management and

improved health in many ways. However, the RA has continued to

progress; perhaps its progress has been slowed a bit by the diet,

supplements and so on; but, there's no doubt it has gotten worse. So,

later this month I will see a rheumatologist and at least try what she

recommends in the way of traditional treatment. I'll still continue

with my special diet and so on as additional support. It's scary, no

doubt; but it's also scary each time I realize a new joint has become

involved and that my knees and wrists are worse. :-(

It's a very personal decision, and each of us must make our own choices

while we respect the choices of others. Our duty is to take the best

and most well-informed control we can over our health and healthcare.

I've found that the wonderful people in this group have been invaluable

in helping me learn and communicate so I can make decisions for myself.

So, do what *you* feel is right for your own health, keep an open mind,

and continue to learn everything you can about RA and its possible

treatments.

Wishing you comfort,

Prakasha

On May 1, 2006, at 7:27 PM, wrote:

> Hi Lavndr..thanks for the response.

> To make it short.........I was diagnosed with RA last September. Was

> on Prednisone for 2 months. Rhummy wanted me to go on Methatrex, but i

> balked. Went off Pred. and have tried homeopathic and acupuncture for

> the last 3 months. Has given some relief. But the flareups are very

> painful. Will be going back to Rhummy on Thur. this week and am trying

> to make a decision as to wether or not to do Methx. I have read a lot

> and have looked at some of these emails and wonder what to do. Seems

> even when people are on high powered drugs they still are looking for

> pain relief. I find that two beers in the afternoon helps me deal with

> the pain if Aleeve or Tynenol Arth. does not kick in.(I switch between

> the two). So which way to ruin my liver? Wild-K

>   [ ] Hi, I'm new here too...need insight too

>

>

>   I have Fibro, Lupus, and 3 bulging ervical disks (they say from my

>   cartilage disintegrating basically). I'm seeing a pain management

>   specialist and receiving Vitamin IV Therapy for energy, PT for

> trying

>   to strengthen muscles, Davrocet (not working) Tramadol (causing

>   swelling) Lunesta (still not sleeping) Skelaxin (who knows...)

> they're

>   considering putting me on a morphine trial pump but I'm 35 and feel

>   I'm too young for such drastic measures, yet I'm in pain.

>   I also seem to be noticing something very wierd and would like to

> kow

>   if anyone has insight? I seem to be noticing that I have no energy

>   during the day at all. NONE..an dyet I can't sleep at night.

> However,

>   I've noticed that my energy increases after the sun sets, my pain

>   lessens, I'm fully awake and ready to go. It's been very weird.

>

>

>

>

>

>

>

>  

[Guest guest]

Prakasha,

Would you mind sharing about the kind of diet you follow that helps with your

RA? I would like to learn more about dietary changes to try with my daughter.

Also, what types of supplements have you found to be most helpful.

I know everyone responds differently to these things, but learning what has

worked for you might give me a starting point.

Thanks,

Lori

_____

From: [mailto: ] On Behalf

Of brightt@...

Sent: Tuesday, May 02, 2006 12:11 PM

Subject: Re: [ ] Hi, I'm new here too...need insight too

My diagnosis came 6 years ago. I, too, balked--big time--at taking the

regular meds. I embarked on a quest in alternative medicine and--to

make a long story short--found help that way with pain management and

improved health in many ways. However, the RA has continued to

progress; perhaps its progress has been slowed a bit by the diet,

supplements and so on; but, there's no doubt it has gotten worse. So,

later this month I will see a rheumatologist and at least try what she

recommends in the way of traditional treatment. I'll still continue

with my special diet and so on as additional support. It's scary, no

doubt; but it's also scary each time I realize a new joint has become

involved and that my knees and wrists are worse. :-(

It's a very personal decision, and each of us must make our own choices

while we respect the choices of others. Our duty is to take the best

and most well-informed control we can over our health and healthcare.

I've found that the wonderful people in this group have been invaluable

in helping me learn and communicate so I can make decisions for myself.

So, do what *you* feel is right for your own health, keep an open mind,

and continue to learn everything you can about RA and its possible

treatments.

Wishing you comfort,

Prakasha

On May 1, 2006, at 7:27 PM, wrote:

> Hi Lavndr..thanks for the response.

> To make it short.........I was diagnosed with RA last September. Was

> on Prednisone for 2 months. Rhummy wanted me to go on Methatrex, but i

> balked. Went off Pred. and have tried homeopathic and acupuncture for

> the last 3 months. Has given some relief. But the flareups are very

> painful. Will be going back to Rhummy on Thur. this week and am trying

> to make a decision as to wether or not to do Methx. I have read a lot

> and have looked at some of these emails and wonder what to do. Seems

> even when people are on high powered drugs they still are looking for

> pain relief. I find that two beers in the afternoon helps me deal with

> the pain if Aleeve or Tynenol Arth. does not kick in.(I switch between

> the two). So which way to ruin my liver? Wild-K

> [ ] Hi, I'm new here too...need insight too

>

>

> I have Fibro, Lupus, and 3 bulging ervical disks (they say from my

> cartilage disintegrating basically). I'm seeing a pain management

> specialist and receiving Vitamin IV Therapy for energy, PT for

> trying

> to strengthen muscles, Davrocet (not working) Tramadol (causing

> swelling) Lunesta (still not sleeping) Skelaxin (who knows...)

> they're

> considering putting me on a morphine trial pump but I'm 35 and feel

> I'm too young for such drastic measures, yet I'm in pain.

> I also seem to be noticing something very wierd and would like to

> kow

> if anyone has insight? I seem to be noticing that I have no energy

> during the day at all. NONE..an dyet I can't sleep at night.

> However,

> I've noticed that my energy increases after the sun sets, my pain

> lessens, I'm fully awake and ready to go. It's been very weird.

>

>

>

>

>

>

>

>

[Guest guest]

>

> Hi Lavndr..thanks for the response.

> To make it short.........I was diagnosed with RA last September. Was

on Prednisone for 2 months. Rhummy wanted me to go on Methatrex, but i

balked. Went off Pred. and have tried homeopathic and acupuncture for

the last 3 months. Has given some relief. But the flareups are very

painful. Will be going back to Rhummy on Thur. this week and am trying

to make a decision as to wether or not to do Methx. I have read a lot

and have looked at some of these emails and wonder what to do. Seems

even when people are on high powered drugs they still are looking for

pain relief. I find that two beers in the afternoon helps me deal with

the pain if Aleeve or Tynenol Arth. does not kick in.(I switch between

the two). So which way to ruin my liver? Wild-K

Wild K--

This is my first post here--I've been lurking for awhile and learning

a lot from others on this group.

Just wanted to share my experience with you. I've been having

symptons of RA for about a year now. I first went to a wonderful

Rheumy last August. After a couple of months on NSAIDS only, he put

me on Methotexrate. I was very scared the first time I took my pills.

I sat the four of them out in front of me and stared at them. I

finally got up the nerve to take them, and I'm awfully glad I did.

I'm up to six 2.5mg pills a week now. And it is helping immensely.

I'm one of the lucky ones--I haven't noticed any side effects at all.

Not even fatigue the next day. I do also take 10mg of Leucovorin

once a week as well. From everything I've read, and listening to my

rhuemy, it's very important to take either folic acid or Leucovorin

(folinic acid) to counter act the side effects of MTX.

One thing though--you'll definitely have to lay off the two beers in

the afternoon if you go on MTX. I do have a very occasional glass of

wine--probably about one glass every month and a half or so. My

bloodwork has always come back great for my liver enzymes.

Good luck on making your choices. No easy ones here. One thing to

consider though is long term joint damage. The MTX will work to slow

the progression of joint damage down--Aleeve and Tylenol Arthritis don't.

dordale