Re: Suggestions needed and appreciated

[Guest guest]

Donna

I tried the REMERON. I could write book on side effects I got from that

one.

Vioxx was a joke. So was Celebrex. I will refuse any Pred.

Ultram made me run my mouth (when I wasn't throwing up)

Elavil gave me hang over from ...

Flexeril was a joke.

Soma... no one saw me for a week. Laid me out cold. So that went into my

Med grave yard also.

I am currently on EFFEXOR for Fibromyalgia.

They have given up on something for the OA. Now it appears they are

saying I will soon need a replacement for EACH of my knees. Hummm. And

no meds for me?

They have given me no narcotics for pain yet. And believe me I would

sell my soul for some. That... or contemplate drinking.

For pain they gave me this " wonderful new drug that is having all kinds

of success! "

Bull.

It is called NEURONTIN. I would LOVE to find the guy who created this

piece of crap. Make HIM take it.

If you don't mind feeling like you just had 5 mixed drinks within the

space of 30 minutes... then you can take it.

I actually feel as if the room spins. Even upon laying down. It is a

horrible horrible feeling. The nausea kicks in approximately 2 hours

after taking it. (don't know why, but it is almost always exactly 2

hours...always)

And I itched something awful. On the 3rd day of taking it... I broke out

in hives all over. It felt like I was even sunburned. (and of course all

this was over the THanksgiving holidays.)

I stopped it this past Saturday. I can not say if it helped with pain or

not, as I was having such awful side effects with it.

Today the rash is just starting to go away.

The doctors office still has not returned my call.

The EFFEXOR does seem to add energy... well, not exactly " energy " to " do

things " , it is more like it gives you a little more " staying power " for

the things you MUST do.

So this is something at least.

EFFEXOR does NOT... NOT help with sleep however. Do not let them tell

you it does. I am still averaging about 2 hours per night. That is it.

It does NOT help with pain as they proclaim also. It is what I called a

" two edged sword " ... meaning that it did seem to pick you up some, yet

it made you much much more " aware of the pain " because you were actually

feeling like doing a little something. So... I am doomed I guess. I am

at the lowest point I have ever been. The relentless grip of pain I fear

is taking a toll on me. And I tried to tell the doctor that last week...

his solution??? " Come back in 3 months... "

With medical science, seems like there are more alternatives than they

are offering. Sometimes I think our " alternatives " are only what the

" Drug Salesmen " have as samples in their cases that they buy off our

doctors with, to try to push their drugs.

Ahhh... do I sound pissed?

Well I am. I hate Doctors. And I hate being sick. But then again, none

of ya'll enjoy being sick either. I am just so helpless and hopeless

feeling here lately. A pitiful mess.

But I guess there is a reason for everything.

If anyone has a clue however... let me know.

Susie

Donna Marie wrote:

> Hi everyone. I know that I rarely post, but I thought maybe you all

> could lend me your experience.

>

> My pain has recently gotten very bad. It has always been bad, but it

> has gotten much worse. My doctor still is undecided as to what is

> wrong with my joints, and recently declared that I am not swelling,

> but that I am only *thinking* that I am swelling in my joints. This

> is

> a load of crap and I will be seeking out a new doctor.

> I have tried several medications for arthritis, including: MTX,

> Celebrex, Vioxx, Arava, Riduara, Prednisone and Plaquenil.

> For the pain of fibromyalgia, I tried: Ultram and Darvocet, FLexeril

> The anti-depressants I have been given for sleep and fibro are:

> Elavil, Celexa, Paxil, Remeron and Ambien for sleep.

>

> My question to you all is what should I try for pain next? I realize

> everyone is different, but some suggestions would be great. I refuse

> to take any more anti-d's because they do not help me. My other

> question is did it take you all a long time to be diagnosed with RA?

> My RA factor has come back negative, as has my ANA test, and a lyme

> disease test. What other tools can be used for diagnosis? Any

> suggestions are greatly appreciated.

>

> Donna Marie

>

>

> eGroups Sponsor

[click here]

>

> Our websites: http://rheumatoid.arthritis.freehosting.net/

> http://www.rasupport.webprovider.com/

> Change subscription options:

[Guest guest]

Donna Marie,

I had great luck with trazadone for FM. I took one at night before bedtime

and it knocks me out. I had a 15+ year sleeping disorder before being

prescribed trazadone. I know you don't want to try any more AD's, but

it may be worth a try.

For pain I used vicodan. I get pretty pissed at these doctors that don't

prescribe adequate

pain relief. Sometimes if you insist and don't take no for an answer, they

will prescribe

decent pain medication. Some people have had better luck going to pain

management clinics.

I am also negative for both RA factor and ANA. For 20 years I was told I

have

RA, but a new doctor diagnosed me with chronic inflammatory arthritis.

Erosion of the joints show up on x-ray and is used as a diagnosis for RA.

Is your sed rate or crp elevated? If your doctor is saying you only THINK

your

joints are inflamed, these tests may be normal. The sed and Crp are

indicator of inflammation and are elevated during RA flares. Considering

there are over 100 different

types of arthritis, it is not easy diagnosing which one we have.

a

----- Original Message -----

From: Donna Marie <donnam26@...>

< egroups>

Sent: Monday, November 27, 2000 4:55 PM

Subject: [ ] Suggestions needed and appreciated

> Hi everyone. I know that I rarely post, but I thought maybe you all

> could lend me your experience.

>

> My pain has recently gotten very bad. It has always been bad, but it

> has gotten much worse. My doctor still is undecided as to what is

> wrong with my joints, and recently declared that I am not swelling,

> but that I am only *thinking* that I am swelling in my joints. This

> is

> a load of crap and I will be seeking out a new doctor.

> I have tried several medications for arthritis, including: MTX,

> Celebrex, Vioxx, Arava, Riduara, Prednisone and Plaquenil.

> For the pain of fibromyalgia, I tried: Ultram and Darvocet, FLexeril

> The anti-depressants I have been given for sleep and fibro are:

> Elavil, Celexa, Paxil, Remeron and Ambien for sleep.

>

> My question to you all is what should I try for pain next? I realize

> everyone is different, but some suggestions would be great. I refuse

> to take any more anti-d's because they do not help me. My other

> question is did it take you all a long time to be diagnosed with RA?

> My RA factor has come back negative, as has my ANA test, and a lyme

> disease test. What other tools can be used for diagnosis? Any

> suggestions are greatly appreciated.

>

> Donna Marie

>

>

>

> Our websites: http://rheumatoid.arthritis.freehosting.net/

> http://www.rasupport.webprovider.com/

> Change subscription options:

>

[Guest guest]

,

Yes you sound pissed, and I don't blame you. Trying to cope with 2 hours of

sleep is not to easy. Not being treated for your pain is not fair.

Since Soma knocked you out, would a lower dose help you sleep at night?

As I told Donna, trazadone was great for both FM and sleep for me.

Some AD's make you sleepy and others don't. Effexor is not one that makes

you sleepy. My doctor doesn't prescribe Effexor for FM. He only prescribes

the ones

that cause sleepiness because sleep disorder is so common in FM.

I had both of my knees replaced 3 years ago, and it was the best thing I

ever did.

I know the pain you are living with. It isn't easy trying to get the right

drug combination.

I hope you find something soon.

a

----- Original Message -----

From: Headley <sheadley@...>

< egroups>

Sent: Monday, November 27, 2000 5:24 PM

Subject: Re: [ ] Suggestions needed and appreciated

> Donna

> I tried the REMERON. I could write book on side effects I got from that

> one.

> Vioxx was a joke. So was Celebrex. I will refuse any Pred.

> Ultram made me run my mouth (when I wasn't throwing up)

> Elavil gave me hang over from ...

> Flexeril was a joke.

> Soma... no one saw me for a week. Laid me out cold. So that went into my

> Med grave yard also.

> I am currently on EFFEXOR for Fibromyalgia.

> They have given up on something for the OA. Now it appears they are

> saying I will soon need a replacement for EACH of my knees. Hummm. And

> no meds for me?

> They have given me no narcotics for pain yet. And believe me I would

> sell my soul for some. That... or contemplate drinking.

> For pain they gave me this " wonderful new drug that is having all kinds

> of success! "

> Bull.

> It is called NEURONTIN. I would LOVE to find the guy who created this

> piece of crap. Make HIM take it.

> If you don't mind feeling like you just had 5 mixed drinks within the

> space of 30 minutes... then you can take it.

> I actually feel as if the room spins. Even upon laying down. It is a

> horrible horrible feeling. The nausea kicks in approximately 2 hours

> after taking it. (don't know why, but it is almost always exactly 2

> hours...always)

> And I itched something awful. On the 3rd day of taking it... I broke out

> in hives all over. It felt like I was even sunburned. (and of course all

> this was over the THanksgiving holidays.)

> I stopped it this past Saturday. I can not say if it helped with pain or

> not, as I was having such awful side effects with it.

> Today the rash is just starting to go away.

> The doctors office still has not returned my call.

> The EFFEXOR does seem to add energy... well, not exactly " energy " to " do

> things " , it is more like it gives you a little more " staying power " for

> the things you MUST do.

> So this is something at least.

> EFFEXOR does NOT... NOT help with sleep however. Do not let them tell

> you it does. I am still averaging about 2 hours per night. That is it.

> It does NOT help with pain as they proclaim also. It is what I called a

> " two edged sword " ... meaning that it did seem to pick you up some, yet

> it made you much much more " aware of the pain " because you were actually

> feeling like doing a little something. So... I am doomed I guess. I am

> at the lowest point I have ever been. The relentless grip of pain I fear

> is taking a toll on me. And I tried to tell the doctor that last week...

> his solution??? " Come back in 3 months... "

> With medical science, seems like there are more alternatives than they

> are offering. Sometimes I think our " alternatives " are only what the

> " Drug Salesmen " have as samples in their cases that they buy off our

> doctors with, to try to push their drugs.

> Ahhh... do I sound pissed?

> Well I am. I hate Doctors. And I hate being sick. But then again, none

> of ya'll enjoy being sick either. I am just so helpless and hopeless

> feeling here lately. A pitiful mess.

> But I guess there is a reason for everything.

> If anyone has a clue however... let me know.

> Susie

> Donna Marie wrote:

>

> > Hi everyone. I know that I rarely post, but I thought maybe you all

> > could lend me your experience.

> >

> > My pain has recently gotten very bad. It has always been bad, but it

> > has gotten much worse. My doctor still is undecided as to what is

> > wrong with my joints, and recently declared that I am not swelling,

> > but that I am only *thinking* that I am swelling in my joints. This

> > is

> > a load of crap and I will be seeking out a new doctor.

> > I have tried several medications for arthritis, including: MTX,

> > Celebrex, Vioxx, Arava, Riduara, Prednisone and Plaquenil.

> > For the pain of fibromyalgia, I tried: Ultram and Darvocet, FLexeril

> > The anti-depressants I have been given for sleep and fibro are:

> > Elavil, Celexa, Paxil, Remeron and Ambien for sleep.

> >

> > My question to you all is what should I try for pain next? I realize

> > everyone is different, but some suggestions would be great. I refuse

> > to take any more anti-d's because they do not help me. My other

> > question is did it take you all a long time to be diagnosed with RA?

> > My RA factor has come back negative, as has my ANA test, and a lyme

> > disease test. What other tools can be used for diagnosis? Any

> > suggestions are greatly appreciated.

> >

> > Donna Marie

> >

> >

> > eGroups Sponsor

> [click here]

> >

> > Our websites: http://rheumatoid.arthritis.freehosting.net/

> > http://www.rasupport.webprovider.com/

> > Change subscription options:

>

>

>

>

>

[Guest guest]

Hi a,

Would you please tell me more about Trazadone? I take Ambian at night, but

still wake up often. I have never slept much, but after fibro and RA, I

sleep even less. I tried Elavil before the RA started, but the side effects

just were not worth it. Sometimes I think if I could just sleep it would be

the best medicine of all!

Patsy

-----Original Message-----

From: a [mailto:aA@...]

Sent: Monday, November 27, 2000 4:59 PM

egroups

Subject: Re: [ ] Suggestions needed and appreciated

Donna Marie,

I had great luck with trazadone for FM. I took one at night before bedtime

and it knocks me out. I had a 15+ year sleeping disorder before being

prescribed trazadone. I know you don't want to try any more AD's, but

it may be worth a try.

For pain I used vicodan. I get pretty pissed at these doctors that don't

prescribe adequate

pain relief. Sometimes if you insist and don't take no for an answer, they

will prescribe

decent pain medication. Some people have had better luck going to pain

management clinics.

I am also negative for both RA factor and ANA. For 20 years I was told I

have

RA, but a new doctor diagnosed me with chronic inflammatory arthritis.

Erosion of the joints show up on x-ray and is used as a diagnosis for RA.

Is your sed rate or crp elevated? If your doctor is saying you only THINK

your

joints are inflamed, these tests may be normal. The sed and Crp are

indicator of inflammation and are elevated during RA flares. Considering

there are over 100 different

types of arthritis, it is not easy diagnosing which one we have.

a

----- Original Message -----

From: Donna Marie <donnam26@...>

< egroups>

Sent: Monday, November 27, 2000 4:55 PM

Subject: [ ] Suggestions needed and appreciated

> Hi everyone. I know that I rarely post, but I thought maybe you all

> could lend me your experience.

>

> My pain has recently gotten very bad. It has always been bad, but it

> has gotten much worse. My doctor still is undecided as to what is

> wrong with my joints, and recently declared that I am not swelling,

> but that I am only *thinking* that I am swelling in my joints. This

> is

> a load of crap and I will be seeking out a new doctor.

> I have tried several medications for arthritis, including: MTX,

> Celebrex, Vioxx, Arava, Riduara, Prednisone and Plaquenil.

> For the pain of fibromyalgia, I tried: Ultram and Darvocet, FLexeril

> The anti-depressants I have been given for sleep and fibro are:

> Elavil, Celexa, Paxil, Remeron and Ambien for sleep.

>

> My question to you all is what should I try for pain next? I realize

> everyone is different, but some suggestions would be great. I refuse

> to take any more anti-d's because they do not help me. My other

> question is did it take you all a long time to be diagnosed with RA?

> My RA factor has come back negative, as has my ANA test, and a lyme

> disease test. What other tools can be used for diagnosis? Any

> suggestions are greatly appreciated.

>

> Donna Marie

>

>

>

> Our websites: http://rheumatoid.arthritis.freehosting.net/

> http://www.rasupport.webprovider.com/

> Change subscription options:

>

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

http://www.rasupport.webprovider.com/

Change subscription options:

[Guest guest]

Donna Marie:

It sounds to me that your dr. has given you RA treatment already seeing as

you have been on meds used in the treatment of RA. A negative RA factor does

not mean you do not have RA. 20% of RA patients have a negative RA factor

including myself. As for pain, you can do other things to help you with your

pain management in addition to drugs. You can do hot soaks in the tub,

reduce your level of activity, get plenty of rest etc. It is not all drug

treatment. The last and I think most important think to remember to to keep

a positive attitude. We all learn to live with our pain and it seems that

your pain threshold changes with a disease like RA. We can take alot more

pain than the average person. I like to try to have a couple of goals each

day to make me feel like I am accomplishing something in spite of my RA and

Fibro. With Fibro and RA swimming in warm water (exercise) is very very good

if it is available to you. Sometimes you go into remission and sometimes you

don't. I would say accept your body as it is and go from there. Good like.

Jeannette

[Guest guest]

Susie:

Why don't they give you darvocet. I take it like all the time and it is a

narcotic but not a heavy duty one. I can drive and everything.

Jeannette

[Guest guest]

I would like to add my 2 cents about Trazadone. I too used to take it to

help me go to sleep until I developed reless leg syndrome. Then it only

increased that problem. Before that, it worked quite well for helping you

sleep at night. The end.

Jeannette

[Guest guest]

Patsy,

I take Trazadone too. It has been a god send for me. I have tried Elavil

and Ambien, and they didn't help at all. It took 2 weeks before it really

started to work. But I am finally sleeping at night.

Judy in Texas (newbie)

> -----Original Message-----

> From: Patsy3 [mailto:Patsy3@...]

> Sent: Monday, November 27, 2000 11:37 PM

> egroups

> Subject: RE: [ ] Suggestions needed and appreciated

>

>

> Hi a,

>

> Would you please tell me more about Trazadone? I take Ambian at

> night, but

> still wake up often. I have never slept much, but after fibro and RA, I

> sleep even less. I tried Elavil before the RA started, but the

> side effects

> just were not worth it. Sometimes I think if I could just sleep

> it would be

> the best medicine of all!

>

> Patsy

>

> -----Original Message-----

> From: a [mailto:aA@...]

> Sent: Monday, November 27, 2000 4:59 PM

> egroups

> Subject: Re: [ ] Suggestions needed and appreciated

>

>

> Donna Marie,

> I had great luck with trazadone for FM. I took one at night

> before bedtime

> and it knocks me out. I had a 15+ year sleeping disorder before being

> prescribed trazadone. I know you don't want to try any more AD's, but

> it may be worth a try.

> For pain I used vicodan. I get pretty pissed at these doctors that don't

> prescribe adequate

> pain relief. Sometimes if you insist and don't take no for an

> answer, they

> will prescribe

> decent pain medication. Some people have had better luck going to pain

> management clinics.

> I am also negative for both RA factor and ANA. For 20 years I was told I

> have

> RA, but a new doctor diagnosed me with chronic inflammatory arthritis.

> Erosion of the joints show up on x-ray and is used as a diagnosis for RA.

> Is your sed rate or crp elevated? If your doctor is saying you only THINK

> your

> joints are inflamed, these tests may be normal. The sed and Crp are

> indicator of inflammation and are elevated during RA flares.

> Considering

> there are over 100 different

> types of arthritis, it is not easy diagnosing which one we have.

>

> a

>

> ----- Original Message -----

> From: Donna Marie <donnam26@...>

> < egroups>

> Sent: Monday, November 27, 2000 4:55 PM

> Subject: [ ] Suggestions needed and appreciated

>

>

> > Hi everyone. I know that I rarely post, but I thought maybe you all

> > could lend me your experience.

> >

> > My pain has recently gotten very bad. It has always been bad, but it

> > has gotten much worse. My doctor still is undecided as to what is

> > wrong with my joints, and recently declared that I am not swelling,

> > but that I am only *thinking* that I am swelling in my joints. This

> > is

> > a load of crap and I will be seeking out a new doctor.

> > I have tried several medications for arthritis, including: MTX,

> > Celebrex, Vioxx, Arava, Riduara, Prednisone and Plaquenil.

> > For the pain of fibromyalgia, I tried: Ultram and Darvocet, FLexeril

> > The anti-depressants I have been given for sleep and fibro are:

> > Elavil, Celexa, Paxil, Remeron and Ambien for sleep.

> >

> > My question to you all is what should I try for pain next? I realize

> > everyone is different, but some suggestions would be great. I refuse

> > to take any more anti-d's because they do not help me. My other

> > question is did it take you all a long time to be diagnosed with RA?

> > My RA factor has come back negative, as has my ANA test, and a lyme

> > disease test. What other tools can be used for diagnosis? Any

> > suggestions are greatly appreciated.

> >

> > Donna Marie

> >

> >

> >

> > Our websites: http://rheumatoid.arthritis.freehosting.net/

> > http://www.rasupport.webprovider.com/

> > Change subscription options:

> >

>

>

>

> Our websites: http://rheumatoid.arthritis.freehosting.net/

> http://www.rasupport.webprovider.com/

> Change subscription options:

>

>

>

>

> Our websites: http://rheumatoid.arthritis.freehosting.net/

> http://www.rasupport.webprovider.com/

> Change subscription options:

>

[Guest guest]

Patsy,

What works well for one of us can be ineffective for another. A medication

which puts one person to sleep may keep another awake. Trazadone is the

first drug to affect me the way it did, but I didn't try other AD's, so I

don't know if it's AD's or Trazadone. All I know is a rock could fall on me

and I wouldn't wake up. I started dreaming again, something I stopped doing

many years ago. I took one about a half an hour before bedtime, and it made

me very drowsy. If you decide to try it, I hope it works as well for you.

If it doesn't work, I hope you continue your search for the right

medication. It can be frustrating, but the right combo makes a big

difference.

Sleep IS the best medicine for us.

a

----- Original Message -----

From: Patsy3 <Patsy3@...>

< egroups>

Sent: Tuesday, November 28, 2000 12:37 AM

Subject: RE: [ ] Suggestions needed and appreciated

> Hi a,

>

> Would you please tell me more about Trazadone? I take Ambian at night,

but

> still wake up often. I have never slept much, but after fibro and RA, I

> sleep even less. I tried Elavil before the RA started, but the side

effects

> just were not worth it. Sometimes I think if I could just sleep it would

be

> the best medicine of all!

>

> Patsy

>

> -----Original Message-----

> From: a [mailto:aA@...]

> Sent: Monday, November 27, 2000 4:59 PM

> egroups

> Subject: Re: [ ] Suggestions needed and appreciated

>

>

> Donna Marie,

> I had great luck with trazadone for FM. I took one at night before

bedtime

> and it knocks me out. I had a 15+ year sleeping disorder before being

> prescribed trazadone. I know you don't want to try any more AD's, but

> it may be worth a try.

> For pain I used vicodan. I get pretty pissed at these doctors that don't

> prescribe adequate

> pain relief. Sometimes if you insist and don't take no for an answer,

they

> will prescribe

> decent pain medication. Some people have had better luck going to pain

> management clinics.

> I am also negative for both RA factor and ANA. For 20 years I was told I

> have

> RA, but a new doctor diagnosed me with chronic inflammatory arthritis.

> Erosion of the joints show up on x-ray and is used as a diagnosis for RA.

> Is your sed rate or crp elevated? If your doctor is saying you only THINK

> your

> joints are inflamed, these tests may be normal. The sed and Crp are

> indicator of inflammation and are elevated during RA flares.

Considering

> there are over 100 different

> types of arthritis, it is not easy diagnosing which one we have.

>

> a

>

> ----- Original Message -----

> From: Donna Marie <donnam26@...>

> < egroups>

> Sent: Monday, November 27, 2000 4:55 PM

> Subject: [ ] Suggestions needed and appreciated

>

>

> > Hi everyone. I know that I rarely post, but I thought maybe you all

> > could lend me your experience.

> >

> > My pain has recently gotten very bad. It has always been bad, but it

> > has gotten much worse. My doctor still is undecided as to what is

> > wrong with my joints, and recently declared that I am not swelling,

> > but that I am only *thinking* that I am swelling in my joints. This

> > is

> > a load of crap and I will be seeking out a new doctor.

> > I have tried several medications for arthritis, including: MTX,

> > Celebrex, Vioxx, Arava, Riduara, Prednisone and Plaquenil.

> > For the pain of fibromyalgia, I tried: Ultram and Darvocet, FLexeril

> > The anti-depressants I have been given for sleep and fibro are:

> > Elavil, Celexa, Paxil, Remeron and Ambien for sleep.

> >

> > My question to you all is what should I try for pain next? I realize

> > everyone is different, but some suggestions would be great. I refuse

> > to take any more anti-d's because they do not help me. My other

> > question is did it take you all a long time to be diagnosed with RA?

> > My RA factor has come back negative, as has my ANA test, and a lyme

> > disease test. What other tools can be used for diagnosis? Any

> > suggestions are greatly appreciated.

> >

> > Donna Marie

> >

> >

> >

> > Our websites: http://rheumatoid.arthritis.freehosting.net/

> > http://www.rasupport.webprovider.com/

> > Change subscription options:

> >

>

>

>

> Our websites: http://rheumatoid.arthritis.freehosting.net/

> http://www.rasupport.webprovider.com/

> Change subscription options:

>

>

>

>

> Our websites: http://rheumatoid.arthritis.freehosting.net/

> http://www.rasupport.webprovider.com/

> Change subscription options:

>

[Guest guest]

I do not have the medical definition of it but I will tell you what it feels

like and what happens when you have restless leg syndrome.

It feels like electricity is running through your legs and you have to keep

them in motion when lying at rest or even sitting at rest. It does has

something to do with your nervous sysrtem I do believe. I have it, my father

has it, and several members of our relation has it. There are web pages

where you can find out more information on the syndrome. a may be able

to point you to them.

Jeannette

[Guest guest]

What is restless leg syndrome?

>>> <ednettieolson@...> 11/28/00 12:19PM >>>

I would like to add my 2 cents about Trazadone. I too used to take it

to

help me go to sleep until I developed reless leg syndrome. Then it

only

increased that problem. Before that, it worked quite well for helping

you

sleep at night. The end.

Jeannette

-------------------------- eGroups Sponsor

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

http://www.rasupport.webprovider.com/

Change subscription options: