RA

[Guest guest]

-

Welcome. This is a very good place to whine. I too have

had a fairly mild form of RA for over 20 years (

diagnosed approx.13 years). I have had more problems

with side effects from drugs. Pleased to hear you've had

some luck with weight training. I am looking into that

and a therapeutic yoga program. I wonder if the flares

are tied to some type of allergic reaction. I am more

likely to flare - at the beginning of spring and fall

but love both seasons.

Welcome!

[Guest guest]

Welcome . I'm happy to hear that you have a mild case. Exercise is very

important for RA patients, but many people are in so much pain it make it very

difficult. You've come to the right place to whine. We understand how you

feel. Cold weather causes me to flare more than anything else.

a

[Guest guest]

,

Iam shelly, my son is 12 yrs old and has had JRA since age 4(think

before then) and related lung disease since age 6(also think before).

This past yr has been the best has ever had due to a new dr that treats

his JRA very aggesively. For jesse in the past it didn't matter what time of

yr it was he would always hurt but he would really hurt when we lived in FL

when ever there was a major change in the weather and in fl that was often.

When we lived in vermont for a yr it almost killed him. Now he has some great

times and hard times usually when its cool and damp. The humid air also

affects him greatly. Last summer we had temps of 125 degrees and he stayed in

the AC more then outside cause it was so hot he couldn't breath very well.

hope this helps you some,

shelly

[Guest guest]

HI I have a problem here ......been in a lot of pain for last couple of

days.......does anyone ever feel like your bones are coming through your skin

on your buttocks when you sit or lie down........I was told it was FMS and

RA in hips combining to make it unbearable.......nothing kills the pain for

long......I used to have this all the time when I was first dxed........but

then havent been bothered by it much in a couple yrs......all of a sudden I

wake up screaming amd moaning in my sleep and it hurts to sit up and then lie

down........it's the rt hip that is worse........

NOw this may sound weird to you but I have tried sitting on ice blocks (you

know those freezer packs)and numb my buttocks then I can try to lean over and

stretch while muscles are froze..and it feels better for a while....but this

only helps for a short while......have to take enough painkillers to knock me

to sleep to get any rest.........

I'm sorry if this is sounding just plain rude but damn it hurts..........I'm

going to go dope me up now.and try to lie down........bye JUdy in AZ

[Guest guest]

In a message dated 4/27/02 1:58:27 PM Central Daylight Time,

JHend65291@... writes:

> HI I have a problem here ......been in a lot of pain for last couple of

> days.......does anyone ever feel like your bones are coming through your

> skin

> on your buttocks when you sit or lie down........I was told it was FMS and

>

> RA in hips combining to make it unbearable.......nothing kills the pain for

>

> long......I used to have this all the time when I was first

> dxed........but

> then havent been bothered by it much in a couple yrs......all of a sudden I

>

> wake up screaming amd moaning in my sleep and it hurts to sit up and then

> lie

> down........it's the rt hip that is worse........

>

> NOw this may sound weird to you but I have tried sitting on ice blocks (you

>

> know those freezer packs)and numb my buttocks then I can try to lean over

> and

> stretch while muscles are froze..and it feels better for a while....but

> this

> only helps for a short while......have to take enough painkillers to knock

> me

> to sleep to get any rest.........

>

> I'm sorry if this is sounding just plain rude but damn it

> hurts..........I'm

> going to go dope me up now.and try to lie down........bye JUdy in AZ

>

> Judy, This doesn't sound weird or rude at all. I had been telling my

husband for quite a few years NOT to put his hand on my right hip when we are

laying down. I sleep on my left side because the pain in my right hip is

horrible. If he puts his hand on that hip, I absolutely can't bear it

(sounds like a really minor problem, right?). He didn't understand at first

how much it hurt. Now that he has heard from the Doc about how bad the RA

is, he is very careful about where he puts his hand when he is going to

sleep. I don't think anyone's worries or pains on here or weird or stupid.

Outsiders may not understand, but the rest of us do. Alice

Elmendorf, Texas

[Guest guest]

sorry judy, hope you feel better soon

[Guest guest]

a, That's what I used to do ...take nice hot soak in the tub.........but

I'm no longer taking baths since my left knee has been doing it's thing(OA

and bursitis).(Rt knee replaced in 98)I cant depend on it to help me get up

and out of there so now I even take my showers on a stool.I do have a hand

held shower massage to hit my hips with and it does feel good to spray warm

water on them ,.........I took some antiinflamatories and painkiller and

slept for a couple hours......I think I will call my RD on Monday and see if

I cant increase something else..........I know if I get a triggerpoint

injection there it might help for awhile.........Thanks .....Judy in AZ

[Guest guest]

Judy,

It's not rude at all to ask such a question. I'm blessed that the RA hasn't

affected my

hips, but I know if it did, I'd have a difficult time sitting. Does a hot bath

help you?

Some of us prefer heat and some prefer ice. If the ice helps, that's great but

don't

think it's weird! We do what we have to do for relief. Hope you feel better

soon.

hugs,

a

Re: [ ] RA

HI I have a problem here ......been in a lot of pain for last couple of

days.......does anyone ever feel like your bones are coming through your skin

on your buttocks when you sit or lie down........I was told it was FMS and

RA in hips combining to make it unbearable.......nothing kills the pain for

long......I used to have this all the time when I was first dxed........but

then havent been bothered by it much in a couple yrs......all of a sudden I

wake up screaming amd moaning in my sleep and it hurts to sit up and then lie

down........it's the rt hip that is worse........

NOw this may sound weird to you but I have tried sitting on ice blocks (you

know those freezer packs)and numb my buttocks then I can try to lean over and

stretch while muscles are froze..and it feels better for a while....but this

only helps for a short while......have to take enough painkillers to knock me

to sleep to get any rest.........

I'm sorry if this is sounding just plain rude but damn it hurts..........I'm

going to go dope me up now.and try to lie down........bye JUdy in AZ

[Guest guest]

........does anyone ever feel like your bones are coming through your skin

on your buttocks when you sit or lie down........>>

Judy, yes! I do get that pain. Usually when I get the really bad hip pain

it's in the sockets the first few days, then after that it is sensitive in

the whole area, and when I sit down it's painful. I've tried sitting on ice

packs, too!

I hope you're over it soon!

Hugs,

Carol in FL

Re: [ ] RA

HI I have a problem here ......been in a lot of pain for last couple of

days.......does anyone ever feel like your bones are coming through your

skin

on your buttocks when you sit or lie down........I was told it was FMS and

RA in hips combining to make it unbearable.......nothing kills the pain for

long......I used to have this all the time when I was first dxed........but

then havent been bothered by it much in a couple yrs......all of a sudden I

wake up screaming amd moaning in my sleep and it hurts to sit up and then

lie

down........it's the rt hip that is worse........

NOw this may sound weird to you but I have tried sitting on ice blocks (you

know those freezer packs)and numb my buttocks then I can try to lean over

and

stretch while muscles are froze..and it feels better for a while....but this

only helps for a short while......have to take enough painkillers to knock

me

to sleep to get any rest.........

I'm sorry if this is sounding just plain rude but damn it hurts..........I'm

going to go dope me up now.and try to lie down........bye JUdy in AZ

[Guest guest]

Judy, this is bad news. I hope your doctor can help you with your

excruciating pain.

When's the last time the ortho had a look at x-rays or MRIs of your

hips? Maybe you can ask him about them the next time you are talking

about your knee.

Hope you can get some relief soon. You deserve a break!

Re: [ ] RA

> HI I have a problem here ......been in a lot of pain for last couple

of

> days.......does anyone ever feel like your bones are coming through

your skin

> on your buttocks when you sit or lie down........I was told it was

FMS and

> RA in hips combining to make it unbearable.......nothing kills the

pain for

> long......I used to have this all the time when I was first

dxed........but

> then havent been bothered by it much in a couple yrs......all of a

sudden I

> wake up screaming amd moaning in my sleep and it hurts to sit up and

then lie

> down........it's the rt hip that is worse........

>

> NOw this may sound weird to you but I have tried sitting on ice blocks

(you

> know those freezer packs)and numb my buttocks then I can try to lean

over and

> stretch while muscles are froze..and it feels better for a

while....but this

> only helps for a short while......have to take enough painkillers to

knock me

> to sleep to get any rest.........

>

> I'm sorry if this is sounding just plain rude but damn it

hurts..........I'm

> going to go dope me up now.and try to lie down........bye JUdy

in AZ

[Guest guest]

I’ve had several bouts of Sciatica (inflammation of the Sciatic Nerve, which

extends from the Spinal Chord into the Buttock area and down into the upper

legs). I’ve not experienced any worse pain (except for when an ingrown

toenail on my big toe was removed)! Hope you get some relief soon, Judy!

Has your dr. ruled out Sciatica??

Take care all!

Elly

Re: [ ] RA

HI I have a problem here ......been in a lot of pain for last couple of

days.......does anyone ever feel like your bones are coming through your

skin

on your buttocks when you sit or lie down........I was told it was FMS and

RA in hips combining to make it unbearable.......nothing kills the pain for

long......I used to have this all the time when I was first dxed........but

then havent been bothered by it much in a couple yrs......all of a sudden I

wake up screaming amd moaning in my sleep and it hurts to sit up and then

lie

down........it's the rt hip that is worse........

NOw this may sound weird to you but I have tried sitting on ice blocks (you

know those freezer packs)and numb my buttocks then I can try to lean over

and

stretch while muscles are froze..and it feels better for a while....but this

only helps for a short while......have to take enough painkillers to knock

me

to sleep to get any rest.........

I'm sorry if this is sounding just plain rude but damn it hurts..........I'm

going to go dope me up now.and try to lie down........bye JUdy in AZ

[Guest guest]

also has this problem. Right now his hip is a big problem. He says it

feels like his tail bone is popping out or that it is pushing his spine. I

thought it was because he was so small. No padding at all.

shelly

[Guest guest]

, I am so sorry is having this pain........I used to have it yrs

ago and it would eventually go away tween drugs and trying to freeze it, or

stretch it out........I used to also get toradol shots (antiinflamatory)1x a

week for 4 wks and then off for 2 wks......but I developed an allergic

reaction to the shots and that was the end of those.

When I went through massage therapy after a car accident a couple yrs ago,

this tiny little masseuse climbed up on the table and pushed her knees

downward on my butt .........it hurt a little but you know I never had that

pain again for a long time......she said for some one my size I didnt have a

lot of padding there and the bones push on the irritated muscles there......

So I called my RD office today and the nurse set me up for a Fri AM appt with

the PA and she said I best be prepared to get some steroid

injections........and possibly send me for some mri on hips........they told

me to increase my painkillers and if the icing of them helps ...keep icing

them.......so I have about 3x today.

I hope feels better .........take care .Judy in AZ

[Guest guest]

The only suggestion I have is to take folic acid along with everything else.

You probably already know that, but my doctor didn't give it to me. I had to

research the problem and call the doctor for an rx for folic acid.

madelonchristine@...

[Guest guest]

Selcome Charlotte,....this ia a wonderful group for support, and

wonderful people, Tawny

>

>

> Hi Everyone. I just recently joined the group. I've been looking

got

> a support group in my area but there are none. I have yet to meet

> anyone my age(24) with this disease. It's been very difficult. I

> hope I can find some comfort here.

> Charlotte

[Guest guest]

Welcome Charlotte YOu have came to a great place I am still a little

new at this since I have just been diagnosed for about 7 months

myself but everyone else is very helpful here I am 31 with a 9 year

old plus work full time in a daycare Have any questions you need

answered this is the place these people are great Again welcome

Angie

>

>

> Hi Everyone. I just recently joined the group. I've been looking

got

> a support group in my area but there are none. I have yet to meet

> anyone my age(24) with this disease. It's been very difficult. I

> hope I can find some comfort here.

> Charlotte

[Guest guest]

Is your husband seeing a rheumatologist? What medications has he

already tried? Has he ever tried any of the new biologicals (Enbrel,

Humira and Remicade)? I am on Enbrel, and it's working very well for

me. It takes a while to get the right combination of meds to bring

relief. Five years is a long time, though. Give us more details about

his case.

Sue

On Tuesday, February 22, 2005, at 01:52 PM, kmerdaxxe wrote:

>

> My husband has RA for 5 years now he always seems to be ill none of

> the medications he's on seem to work. When will he be better? We

> never go out or do anything because he is always poorly.

[Guest guest]

Sorry to hear that you and your husband have had such a difficult

time. Some of the meds can take time, but not 5 years. Give us a

little more info so we could better answer your questions......Marina

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

wrote:

>

>

> My husband has RA for 5 years now he always seems to be ill none

of

> the medications he's on seem to work. When will he be better? We

> never go out or do anything because he is always poorly.

[Guest guest]

I'm sorry about your husband's dx with RA. It's not easy for him,

and not for the family either. I was dx a few years ago, but probably

had it since childhood. I have had a tough time of it.

I take the RA meds, and I am very fatiqued all the time. It's all I

can do to get up out of bed, take a shower, and try to function

around the house. Then to deal with the painful swollen joints, and

have problems walking, dealing with pain, it's a lot to deal with.

What meds is he on? Please, tell us more about him. It would be

great if he could join the group also. I'm glad your here. There is

great information here, and wonderful people.

your new RA friend,

Tawny

>

>

> My husband has RA for 5 years now he always seems to be ill none of

> the medications he's on seem to work. When will he be better? We

> never go out or do anything because he is always poorly.

[Guest guest]

,

I am sorry to hear that your off the RA meds right now. I hope that

you can get back on them soon.

I sure know you are not wanting to deal with surgery right now, but

if it makes you better, then you need to get it done. I hope you have

a speedy recovery, and you can get back on the meds.

I will be praying for you , please keep in touch.

God bless,

Tawny

--- In , " " <bookreaderm@e...>

wrote:

> they took me off my ra meds on feb 1st and said there is nothing

else they

> can do for me. then a private ra doctor charge me 200 to tell me i

have

> fibromyalgia, i noticed since i stopped plaquenil and arava, my

joints are

> stiffer and i have even more pain. i am having surgery wed for

several

> tumors in the uterus and uterus wall is 10cm, its called

hysteroscopy and

> curettage. but i did get some good news last week, my breast tumors

are

> gone.

> i have been busy with college, i still try to go to get out of the

house.

> A

>

>

> Persian Gulf vet-USAF , proud to serve

> America is no 1 thanks to its veterans!

[Guest guest]

Great news on your breast tumors! I'm glad your staying busy with

college, take care T

--- In , " " <bookreaderm@e...>

wrote:

> they took me off my ra meds on feb 1st and said there is nothing

else they

> can do for me. then a private ra doctor charge me 200 to tell me i

have

> fibromyalgia, i noticed since i stopped plaquenil and arava, my

joints are

> stiffer and i have even more pain. i am having surgery wed for

several

> tumors in the uterus and uterus wall is 10cm, its called

hysteroscopy and

> curettage. but i did get some good news last week, my breast tumors

are

> gone.

> i have been busy with college, i still try to go to get out of the

house.

> A

>

>

> Persian Gulf vet-USAF , proud to serve

> America is no 1 thanks to its veterans!

[Guest guest]

Welcome to the group, Sussann. I'm sorry that you have RA, but you will

find that this is a great place to get support and empathy. a and

, our moderators, keep us well educated on RA and other related

diseases by sending us pertinent articles.

Are you seeing a rheumatologist? What meds are you currently on? It

usually takes a while to find the right combination of meds to put the

RA in remission. I was first on methotrexate, then Arava, and now

Enbrel. Enbrel is working very well for me, and I hope you will soon

get the same result.

Sue

On Monday, May 9, 2005, at 08:12 AM, sussannsandekvist wrote:

>

> Im a new member, so not sure of the procedure here.

>

> My name is Sussann, Im 33 and have been diagnosed with RA for jsut

> over a year now. Im just starting to accept that this is not going

> to go away. Have been on new meds for 4 months and whilst things are

> better, there is still a lot of pain.

[Guest guest]

Hi there,

I am 43 years old and have been diagnosed three years now. There are

days still that I think if i eat

differently or if i excercise more that i can get better.

It is a horrible disease. I am starting to realize now that it wont go

away , just hide for a while here and there. Trust me I

love the days that it is hiding. I can not seem to get in remission at

all. I am mostly in horrible pain.

I am on arava, methotrexate injections and also enbrel injections. my

husband says that they will have a cure soon. So I am

opting to believe him. This is a wonderful group. Where are you from?

I am from Canada. If you would like to email me back through

my personal address pls go ahead. it is corinne@....

Corinne

sussannsandekvist wrote:

> Hi

>

> Im a new member, so not sure of the procedure here.

>

> My name is Sussann, Im 33 and have been diagnosed with RA for jsut

> over a year now. Im just starting to accept that this is not going

> to go away. Have been on new meds for 4 months and whilst things are

> better, there is still a lot of pain.

>

> Hope to get to say hi to you all and that you are all feeling well at

> the moment

>

> Sussann

>

>

>

>

>

>

>

[Guest guest]

I'm so glad to hear something positive from someone. I've had RA a couple of

years but for the last few months I've had no pain at all, I'm on Humira and

methtrexate. I feel so lucky that I'm ok now. The future is fearsome when all

you hear is really bad, negative things about your disease. I am constantly

searching for postive outlooks on life. Good for you Lori and thank you. Happy

THanksgiving

Maureen <mjohnston438@...> wrote:Hi Lori,

I have had RA for over 15 years and I just wanted to tell you not to

worry. There have many new and old meds. available and many people

live a fairly normal life. I still work full time and the disease has

been manageable with the proper care. My test results came back

negative in the beginning also.

I never used to like to take any medicines, but now I take over 10

pills a day and you just get used to it. I also take Remicade which is

given every 8 weeks.

If you saw me on the street you would not know I had RA. At first I was

frightened, but now I do not remember what it felt like before I had

this disease.

Best of luck to you!

Maureen

[Guest guest]

I am so sorry for your pain. What do you take? Is it normal for the muscles and

the joints to hurt because my Dr.looks at me like I'm making up the pain.

How do you control your pain?

Corinne Drover <Corinne@...> wrote:

Hi there,

If you email to corinne@... that is my private address

and is the group list.

I was a weight lifter and in great shape working out 7 days

a week with my husband/trainer. But I kept hurting and

taking muscle relaxants......A doctor sent me for test and I was diagnosed.

Now I am over weight and very depressed sometimes. I take two needles a week

for the RA. I hurt from my jaws to my toes. Tonight I swear my skin seems to

heavy

for my body. I have to say that I have a very supportive family but nothing is

as good as

talking to somebody who really understands your pain.

Whitaker wrote: Thank you for listening,for future reference how do I

send this to " the group " ?

Ra first started in my hands and feet and was controlled by hydrocort.I

didn't take it very seriously! I respect it now.Long story short i have been

seeing a specialist and many other doctors. I am being treated for Ra but the

doctor says I am not the " a typical Ra patient " .She is going to refer me to a

clinical trial for injections. I have been taking

methotretate,plaquenil,prednisone(currently discontinued)cymbalta for

depression,depakote for migraines,totally different but combined with this and I

have osteoporosis,I started out then with not being able to move one shoulder

and was sent to the er where they said I had " shoulder strain " .Three days later

I had " shoulder strain in both shoulder I was not able to even brush my teeth or

my hair.I was on several pain medications combined with the pain patch. I had

much relief,but now the pain is so bad in my hips,lower back and legs and it

gets worse instead of better. Today pain management doctor started me on oral

morphine and

vicodin as needed. I am afraid I am going to end up bent and crippled.

Now I also have a lump in my right breast I have to see a surgeon about.

I guess I would like to know what is normal and if I really do have RA or

something else. My muscles hurt all the time and are always so tight my hands

are clenched.

Thank you for listening,forgive me for rattling

Corinne Drover <Corinne@...> wrote:

Hi !!!!

I was happy to get your email back. This email come privately to my

email.....Yes I would love to hear your long story......I will then send you

mine.

Whitaker wrote: Thank you Corinne.

I am 47 and live in Florida. Are you up to my long story on how this all

started and where I am at now? Does this message go to the group or just you?

Eventually I will figure this out.

Corinne Drover <Corinne@...> wrote:

Hi there,

You sure have done this right. You can email to the group or individually.

I sometimes like it to be a little more personal.

I am 44 years old and have had RA for almost 5 years. I am on Enbrel

right now.

If I can answer any of your questions, I would be happy to do so.

I am living in Ottawa, Canada.......

--

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