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At 09:21 PM 11/27/2001 -0000, you wrote:

>I am a 25 year old with aspergers ( mild autism) and I have been

>reading about the correlation between general metal metabolism and

>autism. I am glad I found this group. My social skills are suburb

>with someone who suffers from this condition but I am planning to

>apply to school soon and need some help getting rid of some of my

>ADHD tendencies which accompany my condition. I have tried vitamin

>b6 and zinc supplements but it they make the problem worse and not

>better. I heard there is experimental treatment available tailored

>to proper metal metabolism by a doctor in Chicago. Does anyone here

>know about this ?

Hi Tim,

I'm glad you have joined this list.

Are you asking about the Pfeiffer Institute? They are in Naperville

IL (is that near Chicago?) Here is their website:

http://www.hriptc.org/

One of the people on this list, Ping, takes her child to a doctor

there.

I think they specialize in a number of things, including treating

copper toxicity. They are also doing some research about whether

some genetic markers indicate an inablibity for the body to clear

metals. Of course, it may also really be the " other way around " --

it could be that FIRST you are mercury poisoned, and THEN you get

these markers.

Or, is the " experimental treatment " that you are asking about

heavy metal chelation, or mercury chelation?

Moria

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  • 1 year later...

Hello Kathe,

The neuro was pretty certain it is TN, just wants to rule out

anything else with the MRI. At this point, heck, what's one more

hill to climb? I have been having trouble swallowing too, but didn't

attribute it to the Neurontin. Still a bit goofy though, and I need

to have a snack about every 3 hours or I toss my cookies. I'll

certainly keep the Tegratol in mind if the Neurontin doesn't work out.

Judi

--- In , Kathe Sabetzadeh <lv2ryd@y...>

wrote:

> Hi Judi:

>

> I hope that you don't have trigeminal neuralgia - I

> have a very close friend with that and she has been

> through a lot. Took a while for anybody to be able to

> diagnose it - they kept thinking, as she did too, that

> it was her teeth, and she went through 2 root canals

> before being diagnosed correctly. She was on Neurotin

> for it, but this made her feel all woozy and also

> caused her to have problems swallowing. She has since

> been switched to Tegratol and is having good results

> with that - she barely needs to take the med now

> because she is in a remission phase - TN can come and

> go - but is never cured per se. Best of luck, hope

> you are doing well today -

>

> Kathe in CA

>

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  • 2 months later...

Tawny, Tawny, Tawny,

Didn't anyone ever tell you there are BEARS in the dumps! (We used

to go watch them in Wisconsin.) Seriously, I hope you're not in a

flare or something. Please take care, and do something special just

for you, like watch a musical on TV and have a big cup of hot

chocolate with gooey marshmallows.

Hoping the angels will touch you with their healing feathers,

Judi

> Just been down in the dumps lately, not feeling well at all. Just

> want everyone to know that I am thinking of them, love Tawny

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Tawny,

There are bears in the dumps, but sometimes you can find treasures too. :).

Take care of yourself, and get some rest. Sometimes that helps more than

anything.

Noreen

[ ] Re: Hi everyone

Tawny, Tawny, Tawny,

Didn't anyone ever tell you there are BEARS in the dumps! (We used

to go watch them in Wisconsin.) Seriously, I hope you're not in a

flare or something. Please take care, and do something special just

for you, like watch a musical on TV and have a big cup of hot

chocolate with gooey marshmallows.

Hoping the angels will touch you with their healing feathers,

Judi

> Just been down in the dumps lately, not feeling well at all. Just

> want everyone to know that I am thinking of them, love Tawny

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Tawny, are you any better today? I hope so. What's the latest on the

Humira?

[ ] Hi everyone

> Just been down in the dumps lately, not feeling well at all. Just

> want everyone to know that I am thinking of them, love Tawny

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  • 4 months later...
Guest guest

Good luck tomorrow, Tawny! I'll be anxious to hear the report.

I hope you will be feeling much better soon.

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] Hi everyone

> Hi everyone,

>

> I hope that everyone is doing better, with the warmer weather, the

> spring showers sometimes don't help though.

> I am not feeling well at all. I am in a MAJOR flare right now, and

> it's just hangin' on. I am also having problem with the hip that I

> fell on weeks ago. It's causing a lot of pain all the way down my

> leg, and my leg goes out. Then my left leg is swelling so bad, I

> can't hardly walk on it. I'm also having problems with my arm, I am

> losing my strength in it. I will probably start on the Prednisone

> taper, yuk!

> I'm going to the doctor tomorrow, so I will have everything checked

> out, hopefully will feel better by then. I will keep you all posted

> on the visit.

> I wish that I could trade this older model in for a new one,maybe a

> sporty look,lol

> You all take care, and do a little pampering today for yourself. I

> will keep you all in my prayers, hugs Tawny

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Guest guest

Thanks , will let u know, thanks T

> Good luck tomorrow, Tawny! I'll be anxious to hear the report.

>

> I hope you will be feeling much better soon.

>

>

>

>

> I'll tell you where to go!

>

> Mayo Clinic in Rochester

> http://www.mayoclinic.org/rochester

>

> s Hopkins Medicine

> http://www.hopkinsmedicine.org

>

>

> [ ] Hi everyone

>

>

> > Hi everyone,

> >

> > I hope that everyone is doing better, with the warmer weather,

the

> > spring showers sometimes don't help though.

> > I am not feeling well at all. I am in a MAJOR flare right now,

and

> > it's just hangin' on. I am also having problem with the hip that

I

> > fell on weeks ago. It's causing a lot of pain all the way down

my

> > leg, and my leg goes out. Then my left leg is swelling so bad, I

> > can't hardly walk on it. I'm also having problems with my arm, I

am

> > losing my strength in it. I will probably start on the

Prednisone

> > taper, yuk!

> > I'm going to the doctor tomorrow, so I will have everything

checked

> > out, hopefully will feel better by then. I will keep you all

posted

> > on the visit.

> > I wish that I could trade this older model in for a new one,maybe

a

> > sporty look,lol

> > You all take care, and do a little pampering today for yourself.

I

> > will keep you all in my prayers, hugs Tawny

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Guest guest

Tawny

Good luck to you tomorrow. Write all your questions down, if you are anything

like me I always forget. Keep us posted.

Judith Ann

Tawny <tawnyokc@...> wrote:

Thanks , will let u know, thanks T

> Good luck tomorrow, Tawny! I'll be anxious to hear the report.

>

> I hope you will be feeling much better soon.

>

>

>

>

> I'll tell you where to go!

>

> Mayo Clinic in Rochester

> http://www.mayoclinic.org/rochester

>

> s Hopkins Medicine

> http://www.hopkinsmedicine.org

>

>

> [ ] Hi everyone

>

>

> > Hi everyone,

> >

> > I hope that everyone is doing better, with the warmer weather,

the

> > spring showers sometimes don't help though.

> > I am not feeling well at all. I am in a MAJOR flare right now,

and

> > it's just hangin' on. I am also having problem with the hip that

I

> > fell on weeks ago. It's causing a lot of pain all the way down

my

> > leg, and my leg goes out. Then my left leg is swelling so bad, I

> > can't hardly walk on it. I'm also having problems with my arm, I

am

> > losing my strength in it. I will probably start on the

Prednisone

> > taper, yuk!

> > I'm going to the doctor tomorrow, so I will have everything

checked

> > out, hopefully will feel better by then. I will keep you all

posted

> > on the visit.

> > I wish that I could trade this older model in for a new one,maybe

a

> > sporty look,lol

> > You all take care, and do a little pampering today for yourself.

I

> > will keep you all in my prayers, hugs Tawny

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Guest guest

Judith Ann, I do have my questions ready to go, now if I could just

get the courage to go with it,lol I always forget everything, so I

do write things down when I can. I will keep you posted, and thanks

so much, Tawny

> > Good luck tomorrow, Tawny! I'll be anxious to hear the report.

> >

> > I hope you will be feeling much better soon.

> >

> >

> >

> >

> > I'll tell you where to go!

> >

> > Mayo Clinic in Rochester

> > http://www.mayoclinic.org/rochester

> >

> > s Hopkins Medicine

> > http://www.hopkinsmedicine.org

> >

> >

> > [ ] Hi everyone

> >

> >

> > > Hi everyone,

> > >

> > > I hope that everyone is doing better, with the warmer weather,

> the

> > > spring showers sometimes don't help though.

> > > I am not feeling well at all. I am in a MAJOR flare right now,

> and

> > > it's just hangin' on. I am also having problem with the hip

that

> I

> > > fell on weeks ago. It's causing a lot of pain all the way down

> my

> > > leg, and my leg goes out. Then my left leg is swelling so bad,

I

> > > can't hardly walk on it. I'm also having problems with my arm,

I

> am

> > > losing my strength in it. I will probably start on the

> Prednisone

> > > taper, yuk!

> > > I'm going to the doctor tomorrow, so I will have everything

> checked

> > > out, hopefully will feel better by then. I will keep you all

> posted

> > > on the visit.

> > > I wish that I could trade this older model in for a new

one,maybe

> a

> > > sporty look,lol

> > > You all take care, and do a little pampering today for

yourself.

> I

> > > will keep you all in my prayers, hugs Tawny

>

>

>

>

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Guest guest

Tawny,

I'm so glad you are finally going in. Make sure you tell him about the tumor

like things.

Noreen

[ ] Hi everyone

>

>

> > Hi everyone,

> >

> > I hope that everyone is doing better, with the warmer weather,

the

> > spring showers sometimes don't help though.

> > I am not feeling well at all. I am in a MAJOR flare right now,

and

> > it's just hangin' on. I am also having problem with the hip that

I

> > fell on weeks ago. It's causing a lot of pain all the way down

my

> > leg, and my leg goes out. Then my left leg is swelling so bad, I

> > can't hardly walk on it. I'm also having problems with my arm, I

am

> > losing my strength in it. I will probably start on the

Prednisone

> > taper, yuk!

> > I'm going to the doctor tomorrow, so I will have everything

checked

> > out, hopefully will feel better by then. I will keep you all

posted

> > on the visit.

> > I wish that I could trade this older model in for a new one,maybe

a

> > sporty look,lol

> > You all take care, and do a little pampering today for yourself.

I

> > will keep you all in my prayers, hugs Tawny

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Guest guest

Noreen,

Yeah, I am finally going, can you believe it? I must be bad off,

because I don't like to go to a new doctor. I hope that he will be a

good one, and not run me through like a cow, know what I mean? I

just can't stand it when a doctor don't listen, and just ignores what

you say, and just thinks he knows it all.

I will tell him about all my problems, I have enough too. I am in so

much pain tonight, it's hard to deal with it right now. It seems my

left leg swells worse at night, don't know why. I'm wondering if it

might be a pinched nerve, or a blood clot. It swells real bad, and

even feels kind of numb at times, it's strange.

I have taken 2 Darvocet, 2 Tramadol, started the Prednisone taper,

and then I took the Humira injection today, no relief at all. I will

post tomorrow, and let you know how the visit goes. Take care Tawny

> > Good luck tomorrow, Tawny! I'll be anxious to hear the report.

> >

> > I hope you will be feeling much better soon.

> >

> >

> >

> >

> > I'll tell you where to go!

> >

> > Mayo Clinic in Rochester

> > http://www.mayoclinic.org/rochester

> >

> > s Hopkins Medicine

> > http://www.hopkinsmedicine.org

> >

> >

> > [ ] Hi everyone

> >

> >

> > > Hi everyone,

> > >

> > > I hope that everyone is doing better, with the warmer

weather,

> the

> > > spring showers sometimes don't help though.

> > > I am not feeling well at all. I am in a MAJOR flare right

now,

> and

> > > it's just hangin' on. I am also having problem with the hip

that

> I

> > > fell on weeks ago. It's causing a lot of pain all the way

down

> my

> > > leg, and my leg goes out. Then my left leg is swelling so

bad, I

> > > can't hardly walk on it. I'm also having problems with my

arm, I

> am

> > > losing my strength in it. I will probably start on the

> Prednisone

> > > taper, yuk!

> > > I'm going to the doctor tomorrow, so I will have everything

> checked

> > > out, hopefully will feel better by then. I will keep you all

> posted

> > > on the visit.

> > > I wish that I could trade this older model in for a new

one,maybe

> a

> > > sporty look,lol

> > > You all take care, and do a little pampering today for

yourself.

> I

> > > will keep you all in my prayers, hugs Tawny

>

>

>

>

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Guest guest

Judi, congratulations on 's marriage! I hope she and her new

husband will find lasting happiness this time.

Good luck with the interferon - keep us posted.

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] Hi everyone

> Just thought I'd slip in and say hello. Congrats to Kathi in OK on

> the forthcoming new grandbaby! I don't know how I will stand not

> being around mine when they are sick, because that's when I want to

> cuddle them and " Nonny " (TJ's name for me) them the most.

>

> Tess, " baby Sis " --are you feeling stronger?

>

> Althea, is your family cooperating more? Hope things are better.

>

> Jan, how's the new place?

>

> Heidi, are you enjoying " retirment? "

>

> Al, what's new from your part of the world? And you too, Kathy in IL?

>

> Yesterday our daughter was married. This is her 2nd marriage

> and her husband's 2nd. She was beautiful in my wedding dress (never

> thought I'd see that on her or anyone else--my $35 Montgomery Ward

> special!) and the guys in their tuxes and tails. Little TJ was so

> precious, I can't wait to get the pictures and share them. He stood

> up next to " Daddy " and was quite the little gentleman. They had a

> NASCAR-themed cake, as both & Tom love racing especially the

> Earnhardts, and I made a #3 pin to wear on her dress.

>

> This morning I had my first shot of Interferon, which they let me do

> myself as I will be giving myself the shots at home--3 times a week

> for the next 6 months. They took a ton of blood, and did a very

> thorough exam, gave me a whole stack of paperwork to read through

> with do's and don'ts, so I am now on the chemo road--those of you who

> have been there before or are there now, any suggestions would be

> gratefully accepted. I had the shot at 11:30, it is now 1:20, and I

> am just the slightest bit queasy. Of course I'm always tired with

> Dercum's, sometimes bordering on exhaustion, so there's no way to

> know which is causing which! But I fervently pray that this will

> prove to be if not the cure, at least a better alternative than

> surgery every 3-4 months.

>

> OK, Ron is calling me to come and sit down and have some tea and

> enjoy a sunny day while it lasts. If I missed anyone, blame it on my

> fuzzy foggy brain!

>

> Much love to all,

> Judi

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Guest guest

hey judi, hope you are feeling ok with the new meds. still going to physical

therapy twice a week on my feet and calves. still pretty tight so i don't

know. shr was talking today that they would cut open the foot from the bottom to

release the ligament and probably clean out the spurs since they were causing

so much pain. sounds like surgery will be quite painful. have an open wound on

the bottom of the foot and then to sweat in that boot or cast?? sounds like

infection city to me. other than that trying to hang in there and take muscle

relaxors when i can. she told me not to give up. but....surgery doesn't sound

exciting and plus i really don't know if thats the answer. how many can we keep

releasing? will i be able to move or stabilize that particular areas?? working

20-23 hrs a week. just trying to function. kathy in il

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Guest guest

Congratulations to . I hope she found her true love. It is so nice

that she wore your wedding gown.

I would love to see the pictures when you get them.

How are you feeling today? I hope the interferon didn¹t make you feel bad

and will give you some relief.

a

>

>

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Guest guest

Judi: Thanks so much and I know wher to come for advice,,,,,with

your 3 at one shot I knwo where the expert is......Congratulations

on 's marriage, I wish much happiness for her.....I also am

saying prayers for you and hope the interferon works.....keeping

fingers and other body parts crossed...hugs Kathi in OK-

-- In , " mormar46 " <mormar46@y...> wrote:

> Just thought I'd slip in and say hello. Congrats to Kathi in OK

on

> the forthcoming new grandbaby! I don't know how I will stand not

> being around mine when they are sick, because that's when I want

to

> cuddle them and " Nonny " (TJ's name for me) them the most.

>

> Tess, " baby Sis " --are you feeling stronger?

>

> Althea, is your family cooperating more? Hope things are better.

>

> Jan, how's the new place?

>

> Heidi, are you enjoying " retirment? "

>

> Al, what's new from your part of the world? And you too, Kathy in

IL?

>

> Yesterday our daughter was married. This is her 2nd

marriage

> and her husband's 2nd. She was beautiful in my wedding dress

(never

> thought I'd see that on her or anyone else--my $35 Montgomery Ward

> special!) and the guys in their tuxes and tails. Little TJ was so

> precious, I can't wait to get the pictures and share them. He

stood

> up next to " Daddy " and was quite the little gentleman. They had a

> NASCAR-themed cake, as both & Tom love racing especially the

> Earnhardts, and I made a #3 pin to wear on her dress.

>

> This morning I had my first shot of Interferon, which they let me

do

> myself as I will be giving myself the shots at home--3 times a

week

> for the next 6 months. They took a ton of blood, and did a very

> thorough exam, gave me a whole stack of paperwork to read through

> with do's and don'ts, so I am now on the chemo road--those of you

who

> have been there before or are there now, any suggestions would be

> gratefully accepted. I had the shot at 11:30, it is now 1:20, and

I

> am just the slightest bit queasy. Of course I'm always tired with

> Dercum's, sometimes bordering on exhaustion, so there's no way to

> know which is causing which! But I fervently pray that this will

> prove to be if not the cure, at least a better alternative than

> surgery every 3-4 months.

>

> OK, Ron is calling me to come and sit down and have some tea and

> enjoy a sunny day while it lasts. If I missed anyone, blame it on

my

> fuzzy foggy brain!

>

> Much love to all,

> Judi

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  • 1 year later...

hi kathy welcome and i'm also new i have had bad apin sence i was 15

and well now i'm 34 and just about 4 years ago i was told about the ra

and i have just found a new rummy sence my insurance changed 2 years

ago in between my regular dr was managing the pain but now i'm on mtx

and folic acid so we will see and good luck with the 2 puppy s i have

2 rottis that are pushing about 100 pounds each that i have to take

care of but we love then

melissa

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HI Kathy, I'm new here as well. Welcome to this site, everyone here

seems really nice. I currently work in food service as a mgr. I

was a general mgr but had to give it up as it was just too much.

Now I'm just hanging on until some stock options vest. I understand

what it's like to give up something you enjoyed. It was one of the

hardest things I've had to do. I hope you find some meds to help

you, maybe this new one.

--- In , " aussies4kat " <aussies4kat@y...>

wrote:

> Im new here, but it sure is good to find someone who can relate to

RA.

> I have had RA for 6 years, but have been seeing a Rheumatologist

for 4

> years now. I was a retail manager and finally had to sign up on

> disability about 6 weeks ago. Its been hard making the

transition. My

> flares are frequent and last for about a week. I think I have

tried all

> the meds that are available. My flares are less frequent since I

quit

> work. Retail is hard work, but I loved it, and took pride in it.

Now,

> I have 2 Australian Shepherds that I have made my hobby. Would

love to

> hear from each and everyone of you. I know Im not alone.

>

> Your new friend and support,

>

> Kathy

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Hi Kathy:

Always ready to welcome another Kathy! Welcome to the

group - you are right, we all truly understand what

you are going through. This group has been so

important to me for the information and the caring

support I have been given unconditionally by everybody

here. What medications are you on? Currently, I am

on Methotrexate, Enbrel, Ultracet, and Mobic for my

RA, and other meds for Fibro, Asthma, hypertension and

anti-depressant. Never in a million years would I

have dreamed that I would be taking so many pills -

but we do what we have to do, don't we? I am 51, have

been dx with RA for 6 years, Fibro for 1 year, and

also have Raynaud's. I have two kids, daughter 18 and

son 21, and a wonderful, supportive husband. We have

a small farm here with horses, dogs, and various fowl

- they get me up and going in the morning. We have a

german shepherd, shepherd/husky mix (17 years old!), a

aussie shepherd/lab mix, pug, and chihuahua (the last

two are my kids dogs). Anyway, have rambled on here -

take care -

Kathe in CA

--- aussies4kat <aussies4kat@...> wrote:

> Im new here, but it sure is good to find someone who

> can relate to RA.

> I have had RA for 6 years, but have been seeing a

> Rheumatologist for 4

> years now. I was a retail manager and finally had

> to sign up on

> disability about 6 weeks ago. Its been hard making

> the transition. My

> flares are frequent and last for about a week. I

> think I have tried all

> the meds that are available. My flares are less

> frequent since I quit

> work. Retail is hard work, but I loved it, and took

> pride in it. Now,

> I have 2 Australian Shepherds that I have made my

> hobby. Would love to

> hear from each and everyone of you. I know Im not

> alone.

>

> Your new friend and support,

>

> Kathy

>

>

>

>

>

>

>

Kathe in CA

__________________________________________________

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  • 10 months later...
Guest guest

,

My understanding about Methotrexate is that it is one of the most basic and

common drugs used to treat RA. It's been around for more than 20 years (for RA

purposes) and they know a lot more about it and it's effects than the newer

drugs. It's also very cheap compared to other drugs. My research led me to

believe that it is " the lesser of two evils " in the RA med world compared to

newer drugs like ARAVA, etc.

Of course, I'm not a doctor. The info. I just gave you came from a

combination of my rheumy & my own research. But, MTX is the 1st drug she wanted

to put me on, so my impression is that it's a kind of " first line of defense "

drug.

I noticed you mentioned your hips. I frequently have pain in my hip joints.

When I told my rheumy that, she said that it was osteo - not rheumatoid. I have

wondered how she determined that without any kind of exam, x-rays, etc.

Good luck to you!

<runyonc2001@...> wrote:

I've been a member of this group for about a year, since I suspected

I had RA. The rheumy told me he thought it was Palindromic

rhuematism, and didn't give me any other info or meds. He told me to

come back when I was in pain. I was on celebrex for a year and didn't

have any flare ups, just the day to day aching hips, hands, and now

my wrists are affected. While on vacation in Cherokee NC, I had

pnuemonia and a flare up from h*ll. Thank God my husband had his

vicodin for his back; that;s the only thing that got me through. When

I got home, I decided to give this doc another visit (and if his

bedside manner was as bad as last year, I was going looking for

another). Well this time I saw the PA and she was great. She thinks

it is RA, sent me for xrays and MRI, and started me on valtoren

(because the celebrex wasn't covered by my insurance), and plaquenil.

I talked to a friend of mine who has RA and she said plaquenil

doesn't stop the damage to the joints. (The xrays showed mild to

moderate damage to the hips, hands, & wrists- I didn't need the xray

to tell me that!).

My question is: should I be on something else , like MTX? I'm having

another flare; I don't think the valtoren is working as good as the

celebrex.

Any suggestions? I'm just learning about all of this.

Thanks,

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Guest guest

THank you , I appreciate your input. I'll be going back to the rheumy

after my MRI.

Maybe when they see the results they'll want me on something to deter the

damage.

So much to learn!

> I've been a member of this group for about a year, since I suspected

> I had RA. The rheumy told me he thought it was Palindromic

> rhuematism, and didn't give me any other info or meds. He told me to

> come back when I was in pain. I was on celebrex for a year and didn't

> have any flare ups, just the day to day aching hips, hands, and now

> my wrists are affected. While on vacation in Cherokee NC, I had

> pnuemonia and a flare up from h*ll. Thank God my husband had his

> vicodin for his back; that;s the only thing that got me through. When

> I got home, I decided to give this doc another visit (and if his

> bedside manner was as bad as last year, I was going looking for

> another). Well this time I saw the PA and she was great. She thinks

> it is RA, sent me for xrays and MRI, and started me on valtoren

> (because the celebrex wasn't covered by my insurance), and plaquenil.

> I talked to a friend of mine who has RA and she said plaquenil

> doesn't stop the damage to the joints. (The xrays showed mild to

> moderate damage to the hips, hands, & wrists- I didn't need the xray

> to tell me that!).

> My question is: should I be on something else , like MTX? I'm having

> another flare; I don't think the valtoren is working as good as the

> celebrex.

> Any suggestions? I'm just learning about all of this.

> Thanks,

>

>

>

>

>

>

>

>

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Guest guest

>

Welcome to the group sorry for the reason you are here, I to have

firbo and Ra, and am haveing trouble with sleep< Have you tried

trazodone for sleep? I take 75mg now the dr. started me on 25 now now

the 75 is now working well, anyway It did worked some , good luck to

you hope you can get some sleep,,

Janet IN IL

> > fatigue and not being able to sleep very well at night. I get

about 4

> hours sleep and those hours are interrupted. Does anyone have any

> suggestions or meds they are on that are helping them with this

sleep

> problem?

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Guest guest

Hi, Carol. I'm also new to the group - just joined up a few days ago. I have

RA and fibro. Before I was diagnosed, a dr. suggested sleep apnea because of my

chronic fatigue. I went and did the sleep study and it turned out that I do

have sleep apnea, which is easily treatable with a CPAP machine that you use at

night. It DOES help so it's worth the time to go have the study done.

Obviously, it does not solve all your problems, but it's one factor you can take

out of the equation. The best part is-you can treat it without any drugs-just

good clean air!

Too bad the rest of our issues are not treatable with fresh air.

Good luck and let me know what you find out.

(Texas)

Carol <Poochins@...> wrote:

I just signed up for this support group. I was diagnosed with RA about

3 years ago. I am just now deciding that being part of a support group

would be very beneficial for me...DUH!! I also have fibromyalgia. I

guess alot of folks with RA also have fibro. I am on Enbrel injections

and methotrexate right now. I do pretty good. My biggest problem is

fatigue and not being able to sleep very well at night. I get about 4

hours sleep and those hours are interrupted. Does anyone have any

suggestions or meds they are on that are helping them with this sleep

problem? I have tried EVERY sleeping pill available. I have tried sleep

CDS, with music and some with subliminal suggestion, all to no avail. I

have been thinking about going to sleep clinics to see what they can

find out, if anything. I just started taking a combination of Valerian

and 5-HTP as suggested by my chiropracter. These pills may take a

little time to work. So, do any of you folks have any other ideas?? I

welcome any comments!! Thanks.

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Hi Carol

I hate to say this, but Fibro screws with your stage 3 and stage 4 sleep

[ deep sleep, not dream sleep]. All of the sleep meds help you get to

sleep [ affect the first stages of sleep] but do nothing to get you into

the deeper stages of sleep, as you have sadly found.

You don't mention if you are on an SSRI or a tricyclic anti-depressant.

For Fibro to help with the sleep problems [ as well as pain] Drs.

usually prescribe one of these medications. Serotonin [ which is what

these meds modify] is crucial in both sleep AND pain control. If your

not on one of these medications, you might what to talk to your doctor

about trying one.

Also have you ever had a sleep study? Many times sleep problems come

from things that we're not going to notice because we're ASLEEP when

they happen <g>! I have had a few, it is how I realized I had problems

with stage 4 sleep [ didn't used to get any...which after a few months

will wreck you completely..or so I found] and Restless legs syndrome [

my cats didn't bother to tell me I was kicking the crap out of them

nightly..nice of them huh?] I started on Effexor XR and Levodopa and

within a couple of months I was sleeping 12 hours at a stretch . I think

my body was making up for lost sleep.

Basically, if it is a chemical problem or a sleep architecture problem,

all the tea and nice music in the world will not be able to fix it.

Ms.

Carol wrote:

> I just signed up for this support group. I was diagnosed with RA about

> 3 years ago. I am just now deciding that being part of a support group

> would be very beneficial for me...DUH!! I also have fibromyalgia. I

> guess alot of folks with RA also have fibro. I am on Enbrel injections

> and methotrexate right now. I do pretty good. My biggest problem is

> fatigue and not being able to sleep very well at night. I get about 4

> hours sleep and those hours are interrupted. Does anyone have any

> suggestions or meds they are on that are helping them with this sleep

> problem? I have tried EVERY sleeping pill available. I have tried sleep

> CDS, with music and some with subliminal suggestion, all to no avail. I

> have been thinking about going to sleep clinics to see what they can

> find out, if anything. I just started taking a combination of Valerian

> and 5-HTP as suggested by my chiropracter. These pills may take a

> little time to work. So, do any of you folks have any other ideas?? I

> welcome any comments!! Thanks.

>

>

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  • 8 months later...
Guest guest

Ouch, hope nothing is broken!

I tripped last weekend on some bricks at Lowe's, and scrapped up my knee

and wrist. I was mostly embarrassed.

Joy

~Kerry~ <kerry-lane@...> wrote:

How is everyone today?

I had a good early day, then I thought since I was feeling better I was

going to dig my flower garden, so I went outside started to dig, and

appearently lost my balance while on the shovel and fell on my ass.... So

now I am sitting in bed with my foot up because I either sprained my foot or

broke something.. :( So I will be around the rest of the night probably...

I need to wait to go to the Dr till tomorrow to make sure it isnt a sprain,

since money is soooooooo tight...

Hope everyone has a better night than I am

Kerry

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  • 3 months later...

I am glad it is working for you. Its always good to hear when someone

finds something to help.

Heidi M

On 8/19/07, hammy412000 <hammy412000@...> wrote:

>

> Well I think Lyrica is a magic drug. I've been taking it for four

> weeks now 150 mg twice a day. I have had no pain in four weeks. I am

> sooooo relieved not to have the chest pain anymore. I would recommend

> it to anyone. Peace out! Chirs

>

>

>

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