fibro question

[Guest guest]

Laurie,

Just a thought. Does anyone know if Glucosamine Sulfate can be taken if

your liver levels are high. You can your pharmacist to ask about it.

Rhonda in Missouri

alaurie1955 wrote:

> Hi Everyone,

>

> This is Laurie from upstate New York. I had my second appt with my

> Rhumy Doc and he said that the MTX seems to be working for the PA. I

> asked him to explain the pain I am in all the time and he said that

> it was the Fibro. He also said that there wasn't anything to take

> for pain relief. Now I seem to be in a real fix because I can't take

> Tylenol or Ibuprofen because my liver levels (whatever that is) are

> up higher than normal.

>

> Anyone have any suggestions?

>

> I would also like to find a really good and up to date book about

> Fibromyalgia. Any suggestions would be greatly appreciated.

> I seem to be like a lot of people on this list....I read thru the

> posts then I really tired (another issue) and never find the energy

> to post. I'd like to change that. I've learned so much from this

> list.

>

> Thanks so much,

> Laurie

[Guest guest]

Laurie,

Your Rheumy told you there is nothing for the pain? I am sorry hon but that is

not true. I am on Methadone 5mg 3x a day and Lortabs 7.5 2x a day for

breakthrough pain. And this regimen along with my Enbrel for the PA at 2 50ml

injecects weekly has really put my Fibro in control. I was in constant pain for

a YEAR. Then we decided to test to see if I had the Epstein Barre Virus (turned

out positive), thus the new dx of Fibro. After a week of Prednisone, I felt so

much better. I have my life back with the Methadone. I do not know if you can

handle the narcotics, but I can. PA can cause pain all the time too, yes, but

not like the Fibro does.

Have you considered getting another opinion from another Rheumatologist? It was

my PCP that put me on Methadone and reduced my Lortabs to 2x a day. My back pain

is down by 80%. YAY. I have my life back.

Good luck, and yes, I too, want to know what books there are out there about

Fibro.

LeAnn in OK

P since 1985, PA since 1999, dx'ed with Fibro in 2005

[Guest guest]

Laurie and LeAnn,

Two of the best books on the market - by far!! - are the books by Dr. Devin

Starlanyl. http://www.sover.net/~devstar/ That is her

website - you can order the books through Amazon or your local book stores - I

have yet to be in a bookstore that didn't have at

least one of her books. They are large, big type and packed full of information

that will not only help you understand what is

going on with the Fibromyalgia part of your health issues, can also help your

family and friends understand it. She goes to great

lengths to help address this issue. I gave my copy to my Social Security Lawyer

and I believe this is helped alot! There is so

much information on this site, I highly recommend you doing an extensive look

through it....including the " Links " and " Support

Groups " pages - they might give you the exact thing you are looking for.

Here is another of my favorite Fibro sites - the " Smptoms and Conditions " page

is simple and very thourough -

http://www.fibromyalgia-symptoms.org/index.html You might get some real help

from this site and help you to distinguish from your

PA and Fibro issues. Of course, there is going to be alot of crossover with

PA....so don't let that discourage you or lead you to

believe that you don't have one or the other.

And this is my favorite piece of literature ever written....LOL!! I sent this

to each and every single one of my friends and family

back in 1999 as a " New Year's Letter " - including of course my own personal

note. I can tell you it did more for my relationships

than anything else I have ever tried to do to explain what I go through on a

daily basis.

http://members.fortunecity.com/webbsweb/fibromyalgia/id5.html

And I just ran across this one when looking for the above letter - I haven't

read it through completely, but it looks like it might

be good as well :-)

http://www.fibromyalgiatreatment.com/letter_to_normals.htm

And yet another letter from a husband of a " Fibromite "

http://groups.msn.com/fibrowhat/aletterfromanormaltonormals.msnw

And yet another helpful explanation of what you are dealing with

http://www.sover.net/~devstar/relative.pdf

Just thought I could help a bit with the questions some of you might have about

Fibromyalgia. I have had it for over 8 years. The

PA I have is something new - I have had MRI's and CTScans every other year or so

for 8 years. It wasn't until 2 months ago that I

actually had anything show up on my CTScan which did indeed show arthritis of my

spine. I have had blood tests every year too - it

wasn't until 4 months ago that my Thyroid test came back high - resulting in me

being on Thyroid medication for the rest of my life.

These are all autoimmune diseases and things that we might all have to deal with

in the future. The sequence of time we get them

may differ - but we are all in the same boat in one aspect or another. And if I

can help answer some of the Fibro questions, I

would be more than happy to....

, Duke, Jack, Hannah and Meghan

Assisting Boston Terriers

Kearney, Nebraska Dedicated to helping abused, neglected and abandoned Boston

Terriers

To the World, you are just a person.....to a Rescue Dog, you are the World!!!

www.nationwidebostonrescue.org www.corunduminium.com -

Ask me about The Corundum Project

Re: [ ] Fibro Question

Laurie,

Your Rheumy told you there is nothing for the pain? I am sorry hon but that is

not true. I am on Methadone 5mg 3x a day and Lortabs

7.5 2x a day for breakthrough pain. And this regimen along with my Enbrel for

the PA at 2 50ml injecects weekly has really put my

Fibro in control. I was in constant pain for a YEAR. Then we decided to test to

see if I had the Epstein Barre Virus (turned out

positive), thus the new dx of Fibro. After a week of Prednisone, I felt so much

better. I have my life back with the Methadone. I

do not know if you can handle the narcotics, but I can. PA can cause pain all

the time too, yes, but not like the Fibro does.

Have you considered getting another opinion from another Rheumatologist? It was

my PCP that put me on Methadone and reduced my

Lortabs to 2x a day. My back pain is down by 80%. YAY. I have my life back.

Good luck, and yes, I too, want to know what books there are out there about

Fibro.

LeAnn in OK

P since 1985, PA since 1999, dx'ed with Fibro in 2005

[Guest guest]

Hi Laurie

This isn`t and answer to what to take for your pain, but your liver

levels worry me, I had to come off MTX because of that and problems

with my blood counts. Since then I have been taking Milk Thistle

capsules to protect my liver and they definately have helped. I bought

them from Holland & Barrett in the UK although I imagine just about

any health food shop should be able to get them.

Take Care

Audrey

Now I seem to be in a real fix because I can't take

> Tylenol or Ibuprofen because my liver levels (whatever that is) are

> up higher than normal.

>

> Anyone have any suggestions?

>

>

[Guest guest]

,

Thank you. I had some of these links but not ALL of them. One that I have that

is one of my favorites is :

http://www.nfra.net/

National Fibromygalia Resarch Assn. I recently ordered their awareness bracelet.

And this is my PEEVE. I notice the National Psoriasis Foundation does NOT have

an awareness pin or bracelet for Psoriasis or Psoriatic Arthritis. They need to

get on the ball because this could be a GOOD fundraiser!!!!!!!!!!

Also, , I thought you just had Fibro etc, but not the PA too? I never

remember you telling me you had the Psoriasis?!?!?!?!??

LeAnn in OK

P since 1985, PA since 1999, dx with Fibro 2005

[Guest guest]

Hi Laurie,

I was on MTX and had to stop it because my liver levels were too

high. It gave me permanent liver damage. It also made me very very

tired - so much so that I couldn't function properly.

In my opinion - a second opinion might be a good idea.

Tramadol (sustained relief) may help with the pain and there are

many other alternatives for pain relief.

I've tried methadone and won't repeat the experiment if I can avoid

it!!!!

I have fibro too.

To be truthful - I think you need to find another rheumy - your

present one has no idea what he is talking about.

Love

Suzie

> Hi Everyone,

>

> This is Laurie from upstate New York. I had my second appt with my

> Rhumy Doc and he said that the MTX seems to be working for the PA.

I

> asked him to explain the pain I am in all the time and he said

that

> it was the Fibro. He also said that there wasn't anything to take

> for pain relief. Now I seem to be in a real fix because I can't

take

> Tylenol or Ibuprofen because my liver levels (whatever that is)

are

> up higher than normal.

>

> Anyone have any suggestions?

>

> I would also like to find a really good and up to date book about

> Fibromyalgia. Any suggestions would be greatly appreciated.

> I seem to be like a lot of people on this list....I read thru the

> posts then I really tired (another issue) and never find the

energy

> to post. I'd like to change that. I've learned so much from this

> list.

>

> Thanks so much,

> Laurie

[Guest guest]

Suzie,

What was your experience with Methadone?

LeAnn in OK currently in ANOTHER fibro flare....

P since 1985, PA since 1999, dx with fibro 2002

[Guest guest]

---HI Laurie, something that I take for fibro is a supplement called

Super Malic Plus. It is magnesium and malic acid and it helps with

the pain of fibro and also gives a little more energy. As you know

with fibro, some things work some of the time, so this doesn't always

make me feel great, but I do think it is someting that helps. Take

care, Susie

In , " alaurie1955 "

<alaurie1955@y...> wrote:

> Hi Everyone,

>

> This is Laurie from upstate New York. I had my second appt with my

> Rhumy Doc and he said that the MTX seems to be working for the PA.

I

> asked him to explain the pain I am in all the time and he said that

> it was the Fibro. He also said that there wasn't anything to take

> for pain relief. Now I seem to be in a real fix because I can't

take

> Tylenol or Ibuprofen because my liver levels (whatever that is) are

> up higher than normal.

>

> Anyone have any suggestions?

>

> I would also like to find a really good and up to date book about

> Fibromyalgia. Any suggestions would be greatly appreciated.

> I seem to be like a lot of people on this list....I read thru the

> posts then I really tired (another issue) and never find the energy

> to post. I'd like to change that. I've learned so much from this

> list.

>

> Thanks so much,

> Laurie

[Guest guest]

Rhonda,

That's a good question, one I will have to inquire about. Is it beneficial to

take Glucosamine without the Chrondroitain (sp?) Thanks much for the suggestion.

Laurie

Rhonda Crane <cranefamily6@...> wrote:

Laurie,

Just a thought. Does anyone know if Glucosamine Sulfate can be taken if

your liver levels are high. You can your pharmacist to ask about it.

Rhonda in Missouri

[Guest guest]

LeAnn,

I had a feeling that someone would say that. There has to be something that will

work for me. Now I'll know to ask, or press the issue next time I see him. In

fact I'm going to call his office and ask. I'm not sure I would be able to do

Methadone, with the liver levels up , but I will inquire.

What do you take the Lortabs for?

Thanks very much for your input. I'm still learning how to deal with all of

this. I had my Dx of PA in Jan. 2005 (also Fibro)

Laurie

DeafEskie <DeafEskie@...> wrote:

Laurie,

Your Rheumy told you there is nothing for the pain? I am sorry hon but that is

not true. I am on Methadone 5mg 3x a day and Lortabs 7.5 2x a day for

breakthrough pain. And this regimen along with my Enbrel for the PA at 2 50ml

injecects weekly has really put my Fibro in control. I was in constant pain for

a YEAR. Then we decided to test to see if I had the Epstein Barre Virus (turned

out positive), thus the new dx of Fibro. After a week of Prednisone, I felt so

much better. I have my life back with the Methadone. I do not know if you can

handle the narcotics, but I can. PA can cause pain all the time too, yes, but

not like the Fibro does.

Have you considered getting another opinion from another Rheumatologist? It was

my PCP that put me on Methadone and reduced my Lortabs to 2x a day. My back pain

is down by 80%. YAY. I have my life back.

Good luck, and yes, I too, want to know what books there are out there about

Fibro.

LeAnn in OK

P since 1985, PA since 1999, dx'ed with Fibro in 2005

[Guest guest]

Laurie,

I take the Lortabs for breakthrough pain. It really does work on top of the

Methadone. Methadone is not for everyone. For some, it does not even help. Plus

all the risks that come with it. I am just happy that it helps me, and I am glad

to know of the possible things that can happen, so that I will know how to

handle the situation if I am confronted with it.

Your liver levels are high due to the MTX. I am surpirsed they have not taken

you off of it and put you on a biologic. When my liver levels got high, we

immediately stopped the MTX. Seriously you might want to consider a second

opinion if you at all can. Many times insurance will cover it if you question

the treatment.

LeAnn in OK

P since 1985, PA sine 1999, dx with Fibro 2005

[Guest guest]

Hi Leann,

I found the Methadone sent me 'off my tree' so to speak but didn't

stop the pain - only dulled it (and my senses).

This disease makes me brain fogged enough without methadone making

me completely wacko.

It was not a pleasant 'trip' so to speak.

I threw them down the toilet.

The fish downstream might have got a more pleasant reaction.

I won't try them again.

Love

Suzie

> Suzie,

>

> What was your experience with Methadone?

>

> LeAnn in OK currently in ANOTHER fibro flare....

> P since 1985, PA since 1999, dx with fibro 2002

>

>

[Guest guest]

Audrey,

I'm sooo glad you bought that up. I seemed to have read about Milk Thistle years

ago but wasn't sure I was remembering it correctly. You're right, if my levels

are still up this month, I'm calling his office and asking if I can be taken off

the MTX. I have 1 problem, I don't need 2!! But then what to take...

Question....does the Milk Thistle bring your liver levels back down to normal?

Or reverse the damage the MTX may have done?

Many thanks again!

Laurie

Audrey <audreymorton@...> wrote:

Hi Laurie

This isn`t and answer to what to take for your pain, but your liver

levels worry me, I had to come off MTX because of that and problems

with my blood counts. Since then I have been taking Milk Thistle

capsules to protect my liver and they definately have helped. I bought

them from Holland & Barrett in the UK although I imagine just about

any health food shop should be able to get them.

Take Care

Audrey

[Guest guest]

you can get Milk Thistle pretty much in any vitamin dept ...drugstores, gnc,

walmarts etc.

It has been used in Europe for Liver Health for hundreds of years. The

pharmacist told me it does not seem to interact badly with any known meds. I

know for me, it brought my enzymes into the normal value range. I don't know if

it will reverse any damage, but the liver is the only organ we have that can

regenerate itself. Not being a Dr I can't say what benefits you will reap for

certain, but I know Milk Thistle helped me.

annie and the pugherd

Re: [ ] Re: Fibro Question

Audrey,

I'm sooo glad you bought that up. I seemed to have read about Milk Thistle

years ago but wasn't sure I was remembering it correctly. You're right, if my

levels are still up this month, I'm calling his office and asking if I can be

taken off the MTX. I have 1 problem, I don't need 2!! But then what to take...

Question....does the Milk Thistle bring your liver levels back down to normal?

Or reverse the damage the MTX may have done?

Many thanks again!

Laurie

Audrey <audreymorton@...> wrote:

Hi Laurie

This isn`t and answer to what to take for your pain, but your liver

levels worry me, I had to come off MTX because of that and problems

with my blood counts. Since then I have been taking Milk Thistle

capsules to protect my liver and they definately have helped. I bought

them from Holland & Barrett in the UK although I imagine just about

any health food shop should be able to get them.

Take Care

Audrey

[Guest guest]

Suzie,

YIKES! That's not a good experience at all with Methadone. Thats why I will

again emphasize... Methadone is NOT for everyone. I am just very fortunate that

it seems to be the right thing for me. It does more than " dull the pain " . The

pain is actually 85% gone! The pain that I do have is very mild in comparision

to what it was before. I have my life back.

But I will stil concur with those who had bad experiences with Methadone--IT IS

NOT FOR EVERYONE, AND it should always be a LAST RESORT if nothing else has

worked for you. It has given me my life back, but could be sheer torture for

others.

LeAnn in OK, P since 1985, PA since 1999, dxed with fibro 2005.

[Guest guest]

,

I can't say thank you enough for all the info and insight you have provided me.

I'm finally feeling like I'm in control again. That's pretty powerful....now if

I can find a way to get rid of this pain!

We seem to have some things in common....I've been into " rescue " for years,

belong to our local Humane Society and raised 5 Guide puppies for Guiding Eyes

for the Blind. I've been " into " dogs all my life. I happen to think that the

Boston's have to be the funniest little dog God ever created. A friend of mine

had a kennel and she had 4 of them (she's out of breeding now cuz I wouldn't

leave her alone about it) They were constantly running in circles and drove the

Saint's crazy. Funniest thing to watch. It's wonderful that you are rescuing

them. It's such worth while work and they know what you have done for them. So

do I. Wonderful!!!!!!

Thanks much again!!

Laurie

CorunDogs <corundogs@...> wrote:

Laurie and LeAnn,

Two of the best books on the market - by far!! - are the books by Dr. Devin

Starlanyl. http://www.sover.net/~devstar/ That is her

website - you can order the books through Amazon or your local book stores - I

have yet to be in a bookstore that didn't have at

least one of her books. They are large, big type and packed full of information

that will not only help you understand what is

going on with the Fibromyalgia part of your health issues, can also help your

family and friends understand it. She goes to great

lengths to help address this issue. I gave my copy to my Social Security Lawyer

and I believe this is helped alot! There is so

much information on this site, I highly recommend you doing an extensive look

through it....including the " Links " and " Support

Groups " pages - they might give you the exact thing you are looking for.

Here is another of my favorite Fibro sites - the " Smptoms and Conditions " page

is simple and very thourough -

http://www.fibromyalgia-symptoms.org/index.html You might get some real help

from this site and help you to distinguish from your

PA and Fibro issues. Of course, there is going to be alot of crossover with

PA....so don't let that discourage you or lead you to

believe that you don't have one or the other.

And this is my favorite piece of literature ever written....LOL!! I sent this

to each and every single one of my friends and family

back in 1999 as a " New Year's Letter " - including of course my own personal

note. I can tell you it did more for my relationships

than anything else I have ever tried to do to explain what I go through on a

daily basis.

http://members.fortunecity.com/webbsweb/fibromyalgia/id5.html

And I just ran across this one when looking for the above letter - I haven't

read it through completely, but it looks like it might

be good as well :-)

http://www.fibromyalgiatreatment.com/letter_to_normals.htm

And yet another letter from a husband of a " Fibromite "

http://groups.msn.com/fibrowhat/aletterfromanormaltonormals.msnw

And yet another helpful explanation of what you are dealing with

http://www.sover.net/~devstar/relative.pdf

Just thought I could help a bit with the questions some of you might have about

Fibromyalgia. I have had it for over 8 years. The

PA I have is something new - I have had MRI's and CTScans every other year or so

for 8 years. It wasn't until 2 months ago that I

actually had anything show up on my CTScan which did indeed show arthritis of my

spine. I have had blood tests every year too - it

wasn't until 4 months ago that my Thyroid test came back high - resulting in me

being on Thyroid medication for the rest of my life.

These are all autoimmune diseases and things that we might all have to deal with

in the future. The sequence of time we get them

may differ - but we are all in the same boat in one aspect or another. And if I

can help answer some of the Fibro questions, I

would be more than happy to....

, Duke, Jack, Hannah and Meghan

Assisting Boston Terriers

Kearney, Nebraska Dedicated to helping abused, neglected and abandoned Boston

Terriers

To the World, you are just a person.....to a Rescue Dog, you are the World!!!

www.nationwidebostonrescue.org www.corunduminium.com -

Ask me about The Corundum Project

[Guest guest]

Laurie,

I too am in rescue. Heart Bandits American Eskimo Dog Rescue. I am

nationwide transport coordinator and also referral chapter for the state of

Oklahoma.

I am just happy with my pain now in control. Hope my doc gets his butt in

gear and gets my med rx in mail. Think I will call clinic today and make

sure he got message.....

LeAnn Cayer & Furbrats Blossom, Meriko & Merlin with Frosty

Heart Bandits American Eskimo Dog Rescue

Oklahoma Referral Chapter

Railroad Coordinator

www.heartbandits.com

" I thank God for my handicaps, for, through them, I have found myself, my

work, and my God. " Helen Keller

[Guest guest]

Does anyone else taking AP for RA also have fibromyalgia? Do you have any

idea if I can expect AP to help with fibro? I hope it does because I have

just weaned off the anti-depressant, Effexor, which had been prescribed to

help me sleep with fibro and fix my serotonin levels. Anyway, the

withdrawal symptoms (even after a month long weaning process) have been

hellish, so I hope very much it will be worth it! I have been free of my

fibro symptoms for many months, and I hope this is a good time find out if

it truly is gone for good.

My AP doc insisted I could drop my pain med and the Effexor as soon as I

felt up to it, but his specialty is pulmonology, and he just came across AP

as a result of seeing how treating patients with walking pneumonia ended up

helping/curing their arthritis. So, I am glad he is there to help me in

this process, but it isn't really his field. See, no one has said to me

that fibro is also a mycoplasm problem, but it seems likely to me since they

call it an autoimmune disorder and don't seem to have any idea what causes

the pain.

TIA for any info you may be able to provide!

Blessings!

Terri