pain

[Guest guest]

Amy -

What do you take for your PA? Is your psoriasis also flaring? Do you

use a ball for core exercises at all? It may be more the approach of

your person and the drugs they are using to control your PA that is at

the crux of your pain. Do you do any hot soaking baths at home? I

actually like it best when I get the water as hot as I can tolerate

and add some dead sea salts to the water. Sounds like you could use

some massage therapy!!

Cheryl M. (AK)

[Guest guest]

,

I am sorry to hear your in so much pain. If it gets too bad, can you

go to the ER? I will keep you in my prayers, and hope you feel

better. Hugs, Tawny

>

> the pain has reared its ugly head. I'm in a flare. It is so bad

that I came home from work and laid on the couch and cried. I called

my rheumy today and they can't see me til the 26th. So I called my

primary and he is going to see me on monday. I hope he can provide

me some relief. Pain meds something. I still have to work tomorrow

and saturday and I will be able to rest most of the day on sunday

before I have to go get my 2 adorable kids. I miss them soo much but

hope I can function enough to take care of them. My life for the

last week as been revolved around pain and I'm sick of being in

pain. I can't even wear my own shoes. I have been wearing my

xboyfriends shoes who is living with me who I would love to be

together in a relationship with again. I got stupid in the middle of

july and told him that I needed a break from him. I still love him

and don't want to see him go that is why I asked him to stay living

here. Anyway, the pain has been unbareable on a scale from 1 to 10

this week its been around an 8 to a 10. The swelling is unbareabe.

I wish I could be like I was before the RA hit me. I'm scared of

going back to the way I was when it first hit me in may 06. I don't

want to be able to not move again.

>

>

>

>

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>

[Guest guest]

and group;

I was thinking. Haaaaaaaa, Omg see the smoke from my head

from thinking. When I joined the group, I was/am on plaqunil and

sulfazaline and no pain relief in sight. I was in so much pain just

like you discribed and more. After I read the post I knew I didnt

have to suffer anymore. I read about Enbrel MXT, humira and many

other cocktails. I told my RA I wanted and needed something else

for this horrifying pain I am in.

She gave me prednisone while I waited for the humira. Now that I am

on humira the RA pain is almost completely gone. I get shots for

bursitis, taking lyrcia for fibro, and I am doing neck exercises

for my neck pain which a fine member of the group told me about.

Maybe just maybe if you talk to your RA you may find something

better to help your pain.

Believe me pain is not what you make of it. I thought that

also for a long time till the pain hit me hard. My hard that is. I

hunt for relief for a few weeks. THis lady on paltalk told me of a

support group. I reluctantly looked and found this group. I thank

God I did.

I am geting better by the month. I just keep reading the wonderful

post here. I have been accused of letting my illnes run my life and

it hurt so bad. I felt so ashamed of being in this condition. My

oldest daughter would tell me to get up and move. I finally ignored

her haaaaaaaaaaa.

We only know our own pain. No one knows someone else's pain. I

agree about not giving up. I did give up for I didnt know what else

to do. I layed in the bed for over a year. Yes its ruff getting up

now. I am fighting now.

THis group gave me the will to fight. I said to myself if that

cocktail can help him/her it can help me. Our mind can make us feel

bad or feel good but we got to believe it completely. And that is

the hardest part. I believed I could feel better and I do. I had

to find my new path. THis group paved my path and I been limping on

it and now I am walking on it.

I don't know your pain. I only know my pain. It sounds like your

suffering so bad, and I am so sorry hon. YOu have children to care

for. I applaud your will. Some of us don't have that will. There

is a way to get the will, we just need to find out how. I have a

wheel chair and my daughter or husband has to clean my bottom now

after I use the bathroom. I dont tell people cause I am so ashamed

of this. I guess I had to finally say it.

Look at the trillions of people over the ages that fought. Than

the day to stop comes. When I am 109 I will let go haaaaaaa. My

great grandpa lived to be 109. I saw him when he was 107 and he

looked very happy. He moved very slowly haaaaaaaaa. but he was

happy. He finally paseed at 109 and I hope to do that too.

I hope you get help for your pain. It sounds so aweful. Good luck

and take care. Many people has said their pain is worse than mine.

I would just agree. What does it matter whose pain is worse, pain

is pain. Pain is a necessity of life. I remember when I was young

and had no pain. Seems like yesterday.

My sister had a sore pinky one time. She would tell me get moving

you are fine. When she got her sore pinky she was disabled

completely haaaaaaaaaa. I am so sorry to laugh but she tickled me

so much. She passed away in a car accident 3 years ago, I miss her

so much.

Gentle kind hugs

Clora

> Doreen,

> I feel you there. i have been on enbrel now for about 2 years and

I still have pain. Some how I manage to get up day after day with

all the pain and keep going to work no matter how much I can't walk

across the floor. It makes me wonder if it is time to throw in the

towel and apply for SSDI which is really hard to get in the state

I'm in. You have to apply 3 times in order to get it. I take

pictures of every joint when it is swelled for documentation in

hopes that it will help when I do apply and my foot on my right is

even starting to twist in. My pinkies on both hands have started to

twist as well if I hold my hands straight out they will stay for a

moment or two but then it drops into my palm and I dont have the

strength to try to pull it back up.

>

> Pain is what you make of it. You cant let RA take a hold of you.

You just have to keep fighting to keep what you can in your life

this is why I keep working and keep fighting. If you let RA take

you instead of you taking it then well you will end up like a good

friend of mine bound to a wheelchair and not able to move at all, in

fact she has to have someone help her wipe when she uses the

bathroom and I don't want that for myself or for anyone else.

Remember to keep moving and don't let yourself get stiff. The

stiffening of the joints hurt worse then the exercise involved to

keep them moving.

>

>

> Living with RA Since 2006

> Mom of 2 wonderful children 3 and 5

>

[Guest guest]

Clora,

thank you for sharing what you have shared with me and the others in the group.

I'm glad that you have found the right path and the group here has helped. I

try to do my best to help out and encourage when I can even though some days I

feel bad. I'm sorry about your sisters passing 3 years ago. Some people in the

world just don't understand and some do. I had a supervisor once tell me well

you don't look sick. I told him where to go and found another job that was

before I knew any better and knew that the whole world didn't care that I was

sick and didn't revolve around me. Anyway, I'm glad you have found the right

combo that works for you. I'm still looking for mine. enbrel has worked for

about 2 years for me and now its not working anymore. I guess after my surgery

in november will start asking my rheumy for something new. at this point it

will probably be remicade along with some other drug. I can't take mtx it makes

me sick both the pills and the shots.

You are a brave woman for sharing some of the things you have shared. I hope

that one day things will change for you and you will be able to do some of the

things you can't do now later.

Jennfer

[ ] Re: PAIN

and group;

I was thinking. Haaaaaaaa, Omg see the smoke from my head

from thinking. When I joined the group, I was/am on plaqunil and

sulfazaline and no pain relief in sight. I was in so much pain just

like you discribed and more. After I read the post I knew I didnt

have to suffer anymore. I read about Enbrel MXT, humira and many

other cocktails. I told my RA I wanted and needed something else

for this horrifying pain I am in.

She gave me prednisone while I waited for the humira. Now that I am

on humira the RA pain is almost completely gone. I get shots for

bursitis, taking lyrcia for fibro, and I am doing neck exercises

for my neck pain which a fine member of the group told me about.

Maybe just maybe if you talk to your RA you may find something

better to help your pain.

Believe me pain is not what you make of it. I thought that

also for a long time till the pain hit me hard. My hard that is. I

hunt for relief for a few weeks. THis lady on paltalk told me of a

support group. I reluctantly looked and found this group. I thank

God I did.

I am geting better by the month. I just keep reading the wonderful

post here. I have been accused of letting my illnes run my life and

it hurt so bad. I felt so ashamed of being in this condition. My

oldest daughter would tell me to get up and move. I finally ignored

her haaaaaaaaaaa.

We only know our own pain. No one knows someone else's pain. I

agree about not giving up. I did give up for I didnt know what else

to do. I layed in the bed for over a year. Yes its ruff getting up

now. I am fighting now.

THis group gave me the will to fight. I said to myself if that

cocktail can help him/her it can help me. Our mind can make us feel

bad or feel good but we got to believe it completely. And that is

the hardest part. I believed I could feel better and I do. I had

to find my new path. THis group paved my path and I been limping on

it and now I am walking on it.

I don't know your pain. I only know my pain. It sounds like your

suffering so bad, and I am so sorry hon. YOu have children to care

for. I applaud your will. Some of us don't have that will. There

is a way to get the will, we just need to find out how. I have a

wheel chair and my daughter or husband has to clean my bottom now

after I use the bathroom. I dont tell people cause I am so ashamed

of this. I guess I had to finally say it.

Look at the trillions of people over the ages that fought. Than

the day to stop comes. When I am 109 I will let go haaaaaaa. My

great grandpa lived to be 109. I saw him when he was 107 and he

looked very happy. He moved very slowly haaaaaaaaa. but he was

happy. He finally paseed at 109 and I hope to do that too.

I hope you get help for your pain. It sounds so aweful. Good luck

and take care. Many people has said their pain is worse than mine.

I would just agree. What does it matter whose pain is worse, pain

is pain. Pain is a necessity of life. I remember when I was young

and had no pain. Seems like yesterday.

My sister had a sore pinky one time. She would tell me get moving

you are fine. When she got her sore pinky she was disabled

completely haaaaaaaaaa. I am so sorry to laugh but she tickled me

so much. She passed away in a car accident 3 years ago, I miss her

so much.

Gentle kind hugs

Clora

> Doreen,

> I feel you there. i have been on enbrel now for about 2 years and

I still have pain. Some how I manage to get up day after day with

all the pain and keep going to work no matter how much I can't walk

across the floor. It makes me wonder if it is time to throw in the

towel and apply for SSDI which is really hard to get in the state

I'm in. You have to apply 3 times in order to get it. I take

pictures of every joint when it is swelled for documentation in

hopes that it will help when I do apply and my foot on my right is

even starting to twist in. My pinkies on both hands have started to

twist as well if I hold my hands straight out they will stay for a

moment or two but then it drops into my palm and I dont have the

strength to try to pull it back up.

>

> Pain is what you make of it. You cant let RA take a hold of you.

You just have to keep fighting to keep what you can in your life

this is why I keep working and keep fighting. If you let RA take

you instead of you taking it then well you will end up like a good

friend of mine bound to a wheelchair and not able to move at all, in

fact she has to have someone help her wipe when she uses the

bathroom and I don't want that for myself or for anyone else.

Remember to keep moving and don't let yourself get stiff. The

stiffening of the joints hurt worse then the exercise involved to

keep them moving.

>

>

> Living with RA Since 2006

> Mom of 2 wonderful children 3 and 5

>

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[Guest guest]

Hi - I am outraged at this new revelation, you say! The world

doesn't revolve around us?!?! Man!! Just when I was starting to enjoy

being completely self-absorbed!!

*lol* Sorry - just felt this sarcasm well up inside of me and it had

to come out. Praying you find the right combo of meds so that your

days are brighter and pain free............Doreen

Clora,

thank you for sharing what you have shared with me and the others in

the group. I'm glad that you have found the right path and the group

here has helped. I try to do my best to help out and encourage when I

can even though some days I feel bad. I'm sorry about your sisters

passing 3 years ago. Some people in the world just don't understand

and some do. I had a supervisor once tell me well you don't look

sick. I told him where to go and found another job that was before I

knew any better and knew that the whole world didn't care that I was

sick and didn't revolve around me. Anyway, I'm glad you have found

the right combo that works for you. I'm still looking for mine.

enbrel has worked for about 2 years for me and now its not working

anymore. I guess after my surgery in november will start asking my

rheumy for something new. at this point it will probably be remicade

along with some other drug. I can't take mtx it makes me sick both

the pills and the shots.

You are a brave woman for sharing some of the things you have shared.

I hope that one day things will change for you and you will be able

to do some of the things you can't do now later.

Jennfer

[Guest guest]

a,

Yep, that's fine. As long as you take your LDN between 9pm and 3am is

all that matters. I take mine at varying times between those hours

depending on when I happen to finish up at the fridge (mine have

acidophilus filler and have to be refrigerated). It's often between

midnight and 3am as I usually don't go to bed until 5am or 6am (no

longer work).

Cheers,

a Nettles wrote:

> Does anyone experience pain when it starts to get closer for them

> take LDN? For example, around 8:00 p.m. or so, I start to hurt in the

> face. I am on 4.5 mg of LDN. I usually take my LDN between 9:00 and

> 10:00 p.m. Are you supppose to take it when you are going to bed or do

> you take just take LDN between the hours of 9:00 p.m. and 3:00 a.m.

> ? I take my dose between the times stated above, but I dont go to bed

> until 12 or so. Is that okay?

>

> Thanks,

> a

[Guest guest]

what about eating? ive been reading on some other ldn sites ,and

there seems to be some debate as to taking the ldn on an empty

stomach being better than taking it with food or after eating.

does it make a difference at all?

just for kicks and giggles i was going to try a week on empty stomach

and then a week with food to see if there was any noticable difference

> > Does anyone experience pain when it starts to get closer for them

> > take LDN? For example, around 8:00 p.m. or so, I start to hurt in

the

> > face. I am on 4.5 mg of LDN. I usually take my LDN between 9:00

and

> > 10:00 p.m. Are you supppose to take it when you are going to bed

or do

> > you take just take LDN between the hours of 9:00 p.m. and 3:00

a.m.

> > ? I take my dose between the times stated above, but I dont go to

bed

> > until 12 or so. Is that okay?

> >

> > Thanks,

> > a

>

[Guest guest]

Makes no differnece, full or empty stomach.

Art

--

>

> what about eating? ive been reading on some other ldn sites ,and

> there seems to be some debate as to taking the ldn on an empty

> stomach being better than taking it with food or after eating.

> does it make a difference at all?

> just for kicks and giggles i was going to try a week on empty stomach

> and then a week with food to see if there was any noticable difference

[Guest guest]

In my experience, it's a better idea to take LDN after eating. It works

just the same wether you eat or not, but the LDN can be a bit hard on

the system for those of us with a sensitive bowel. That's what I felt

after periode of not eating much, anyway.

>

> what about eating? ive been reading on some other ldn sites ,and

> there seems to be some debate as to taking the ldn on an empty

> stomach being better than taking it with food or after eating.

> does it make a difference at all?

> just for kicks and giggles i was going to try a week on empty stomach

> and then a week with food to see if there was any noticable difference

>

>

[Guest guest]

Re taking LDN on a full or empty stomach, in my experience with many dog med's, especially those for treating cushing's disease, it is advisable to give the med's with food as some are better absorbed this way, however, one human med' I take, has to be taken on an empty stomach. So, it would be useful if one of those researchers etc using it in their trials, could answer this one fundamental question - any takers?

Celia

[Guest guest]

Ellie,

Yes, that's the way my RA has hit me. It almost seems to come in pairs

or multiple pairs. One day it's my wrists and elbows and the next it's

my knees and hip. Shoulders, neck and fingers get into the act as

well. I have had though just one knee give me a problem on a day

though too or one hip. It's always an adventure as to where it's going

to bother me next.

I was only diagnosed in the last month and just started MTX and I'm

still on Pred. 20MG so it's more tolerable then it was when it first

started. I guess you could say I have may bad days and my less than

bad days now. Not looking forward to weaning the Pred. which I start

on Monday since it has helped a lot. I also gained 15 pounds in the

last month too.

Hope this helps.

Bob

--- In , " ellesbells77 " <ellesbells@...>

wrote:

>

> Does anyone get pain (like chronic flare up pain) in more than one or

> two joints at a time?

> I have had RA for 20 years and managed it ok but this summer it seems

> to have taken on a life of its own with multiple flare ups at once and

> a feeling that its running rampant at night attacking everything.

> has any one else had this experience (and lived through it!)? its

> really freaking me out and I am afraid there is something more going

> on here than RA. I am on prednisone right now while waiting to see a

> rheumatologist, every time I try and come off the pred its right back

> at me again. I dont think I have been so scared before in my life.

>

> Ellie

>

[Guest guest]

Hi, Sherry. Part of the problem might be that you don't take

anything until it is " really bad. " Pain is weird in that if you

don't stay on top of it, you sometimes just can't get it under

control. My rheumy has scolded me for NOT taking the prescribed

pain meds as directed. You need to take the meds BEFORE the pain

gets too bad. I am currently, as directed by my rheumy, taking one

Tramadol every night even when I feel OK. And sure enough, just

like she said, I am sleeping a whole lot better and not waking up

from the pain as often.

Sherry Z.

[Guest guest]

ssherryhh46 wrote:

..>Do you all have problems getting anything

> for pain? I have never abused medicine, hate to take it and only do

> when absolutely necessary.

I don't. I almost have the opposite problem where my doctor wants me

shoveling narcotics in. My GP says I don't have the kind of personality

that gets addicted and he doesn't worry about that at all. I do worry. To me

if I found something that actually worked on the pain I can see how it might

be easy to want to take it more than I should. So far nothing we have tried

works well enough to be worth the risk though. I've been on lots of

different pain meds at this point but the relief is either not there or

short lived or the med makes me too agitated so I can't sleep.

Gareeth

[Guest guest]

Sherry

I haven't had any problems getting pain meds. Like you I won't take them unless

needed. There is no reason you shouldn't get something for pain. I think I would

look for another rheumy.

Hope things work out for you.

angie

[Guest guest]

Graham...me too on the wine. However I only have it

occasionally...say one or two glasses every 3 months or so. My

rheumy said I could have it very sparingly and not on the day I have

my MTX. I also am prescribed Darvocet which helps quite well with

the pain. I just got back from a visit to a drier desert type

climate and didn't have to take but one pain pill and that was the

day I arrived after being on the airplane several hours.

Sharon

[Guest guest]

<< I haven't had any problems getting pain meds. Like you I won't take

them unless needed. There is no reason you shouldn't get something for

pain. I think I would look for another rheumy.

Hope things work out for you. angie>>

What do you take for pain? When I get relief from the pain, sleep is

soooo much better. I often take over the counter sleep meds because I

have nothing else. I think it is because I am a nurse and the Dr.

might think I will ENJOY not hurting. He acts like the cost of the

meds are coming out of his pocket. Darvocet is practically useless. I

don't even know what to ask for.

Sherry

And, thanks for all your comments.

[Guest guest]

Sherry:  you're absolutely right.  I've had several surgeries and they always

tell you the same thing:  stay ahead of the pain.  Don't wait until it hurts. 

Good advice. 

 Joanna Hoelscher

[Guest guest]

Dear Sherry,

I’ve written this so many times before that people probably think I’m a drug

rep…lol. Seriously, I was out of my mind with pain like you, after having

surgery on my jaw for what they thought was TMJ pain. I didn’t find out

until 2 years later it was PA, but before I totally lost my mind I got lucky

and got into a pain management center. For the past 8 years they have been

treating my pain. I wish I could say I am pain free, but the fact of the

matter is nothing seems to be slowing down my PA. In the few years since I’

ve known I actually have it, I have lost the use of both my knees, my left

hand, my toes are in constant pain and all bent up in knotted in many

places, my left wrist has just started to act up, and I also have several

disc affected in my back as well as needing total joint replacements on both

my jaw joints and both my knees. So unfortunately for me, pain management

just has stayed level with my pain.

I have no doubt I wouldn’t be here without them though since most rheumy’s

don’t want to take on the trouble of writing type 2 narcotics or any of the

harder drugs on the market. At least with pain management they understand

what drug works best for certain types of pain and it has helped me a lot

over the past years. Since developing PA, my immune system has gone crazy

as well. I also developed erythromelalgia, which is a type of neuropathy or

some people consider it similar to complex regional pain syndrome. As I am

now, my hands, face, neck, upper chest area, feet and lower legs all flare

and go bright red and burning sometimes 24/7 without any relief. This one

has even stumped my pain doctors and very few doctors have even heard of

this disorder and even fewer have any idea how to treat it. It’s related to

PA and RA though so I’m sure it’s caused by one of them. I also have

Sjogrens syndrome, severe OA in several joints, osteoporosis, and the list

goes on… From being on steroids for so long, I also developed diabetes and

now have horrible neuropathy in my feet and legs as well. I also got ulcers

about a year ago from all the arthritis meds and that was miserable as well.

Again pain management was there to help me through the tough times.

My doctor doesn’t always treat me with more narcotics either. I’ve tired

all sorts of different things from stellate gangiellon blocks in the neck,

to trigger point injections everywhere, to visualization therapy and just

about anything else you can think of. I’m always willing to try any thing

that won’t make me worse or won’t cause any more pain.

If you like your rheumy and don’t’ want to change, then ask him to refer you

to a pain clinic for the times when it is really bad. You may not need pain

meds all the time, but only some as back up for when it gets really bad. I

know from experience that Darvocet just doesn’t work on high intense pain.

Good luck with your doctors, but remember you don’t have to be in pain

unless you decide that it is ok for you. Some people actually prefer the

pain over the stigma of taking the pain meds. Personally, I would rather

have the pain meds and live my life so I can get some enjoyment out of it

now. But everyone is different and we all have to do what is right for us

at the time. I try not to judge anyone and hopefully they don’t judge me.

If they do, then I just ignore then. Take care and let me know what

happens.

Sincerely, Fran in Florida

[Guest guest]

Fran, thanks so much for the time you took to explain your situation

and I am sorry you have had so much trouble. Fortunately, so far,

mine has not been bad, except for some severe pain. The Enbrel and

methotrexate helps but as I've read from many others, this will

probably not last long. No, I am not pleased with my doctor he is near

retirement and I was not aware of this when I got the appointment. I have

considered seeing an internal medicine doctor to see if he would accept me. My

family doctor is a long time friend, I worked for him for years and he treats me

like a sister ( in other words, he doesn't take me very seriously). I need to

find someone to manage my

condition, someone closer. I drive 100 miles to see him. He takes

very little time and spends most of the 20 or 30 minutes writing,

never telling me anything. If you don't mind, what is your age. I

am 62 and have worked very hard all my life. I need to work 3 more

years, each year gets more difficult. I work in home health, the

evening shift, drive about 100 miles a night. I wish you better

health and less pain.

Sherry

[Guest guest]

You might consider contacting a new doctor. Darvocet is fine for moderate pain

but not for flare ups. It is also considered more dangerous than the

codeine-based meds. I take Darvocet daily simply because I can't sleep if I take

a codeine based med. There are only two that I have found work at all and don't

keep me up. Darvocet and Morphine. Talk about extremes! Darvocet helps with

the pain I have ALL THE TIME. But if I have a flare up I have to either not

sleep and take a heavy duty codeine based med or take morphine which seriously

messes with my stomach. But For a doctor to ONLY prescribe Darvocet is nuts. I

once had a doctor who wouldn't prescribe it at all because he ONCE had a patient

who had a fatal reaction. Even though I had been on it and was obviously not

going to be allergic. I really think that finding the right doctor is SO

important. I am lucky enough to have found one that trusts me enough to listen

to me when I say I know what my body needs and cares enough to really listen and

work with me to keep me healthy.

" tweetygodess " <tweetygodess@...>

[Guest guest]

Sherry -

Are you on any of the biologics in an effort to slow down the PA?

I too have had my PA referred to as " extremely aggressive. "

Cheryl M.

[Guest guest]

I always understood MTX to be part of the regimen to stop the

progression of PA, not pain relief per se. I think most rheumys agree

that MTX alone is insufficient to control the disease progression

unless your case is very very mild, but that's not what you seem to be

describing at all!

Good Luck!

Cheryl M.

[Guest guest]

Yes, I am taking Enbrel. Do you think it is the medication? I don't

remember reading anything along this line as a side effect. But, of

course, I'm sure anything is possible. My doctor, unfortunately,

says very little, he just writes and nods. A bit aggravating.

sherry

[Guest guest]

Are all the rheumys the same, " just write and nod " ? Been so dejected many

times in the past 10 years after my quarterly visits to the Arthritis Center.

~ Joanne ~

[Guest guest]

I agree, it is very frustrating. My rheumy doesn't seem to have much knowledge

on PA at all. I learn so much from this group yet when I mention things to him,

that seem to be common knowledge with all of us, he acts like he's never heard

of it. He is very pleasant and will try any medicines on me that I am agreeable

to but I always end up leaving his office with more questions than answers. I

think there is only one or two other rheumys in this area but I really need to

check them out. My disease is to the point that I can't really fool around any

more.

Thanks for listening,

Deanna