Re: Is this the norm

[Guest guest]

Hey Mark, I don't post here a lot but your post really called out to me. My

father had RA & your symptoms sound an awful like his did. His was years

ago, however, when there was very little to be offered med wise. Questions.

Did you doc not offer you anything for the pain? Did you ask? As RA

sufferers, it's very difficult to live w/o pain meds whether we are on

regular RA meds. Your pain sounds almost too much to bare w/o them. If I

were you, I might call her back & ask for something.

Mark, I've suffered with RA for over 50 years & I'm by no means an expert

but these are the things that have worked for me. First, try to get your

body limbered up by soaking in a hot tub, if that's a possibility. If not,

a hot shower. (either at night or in the a.m.)At night, use heating pads on

areas that are the most painful. Or while you are sitting, use heating pads.

Sitting too long can often cause certain areas to freeze & be painful to get

readjusted. Also the creams like Aspercream, etc work for a quick fix. Try

putting your hands in warm soapy water excersizing them. Sometimes even ice

can help with the swelling. I use it on my ankles. With the wrists, try

using wrist splints or if nothing else, Ace bandages to keep them from

moving a lot. I exercised my wrists (before I had them fixed) in the warm

water also. How long had you been on the Remicade? And obviously it didn't

work? Did you doctor not recommend Prednisone to get you over this hump?

Hope this has helped. Renae

[ ] Is this the norm

> ok, have been hurting for a few weeks, waiting to see what my Dr wanted to

> try next. I I put up with the agony for a week till my Dr. Appoint. Went

> to the Dr. In pain, pretty much decided to switch from remicade, she was

> going to start me on Humira, they did not have any samples there so they

> where going to get me one, well that has been a week ago. While I was at

> the office she pretty much did not say much about me complaining of how

> much pain I have been in, just looking to switch the meds. So here is what

> goes on, at night my shoulders and elbows hurt so much I can only lay on

> my back, I think I spend the whole night waking up becasue I move and then

> it hurts really bad. So morning comes roll out of bed ok. walking and

> moving around ok till about 1:00. then it all goes down hill. feet start

> wrists feel like knives going into them, fingers swell, shoulder s arms,

> knees. I sit untill my knees are on fire, then I struggle to stand so I

> can get my knees back, then I have to sit again because my feet go. Does

> this sound familiar to anyone? Am I maybe doing to much in the mornings to

> aggravate my body, and then paying for it in the evening. new to this

> arthritis thing, trying to figure out the norm.Thanks for all of the

> previous replies, and hopefully when I get it figured out I can assist

> others.

>

> Mark

>

>

>

[Guest guest]

Hi Mark,

I was dx'd in December so I am new to all of this too.  I am trying to figure it

all out too and there seems to be no rhyme or reason to it in my case.  Your

description sounds like what I went through at first too.  When RA first

severely flared for me on Dec. 15, I went to my doctor who referred me to a

rheumy.  I had to wait 4 weeks to see him and was told to take Tylenol.  That

did not help at all.

I hope that you get relief soon somehow.  Take it easy on yourself when you are

feeling bad.  I hope that you have called your doctor to let her know how you

are hurting since you were last seen.

~Connie

From: mah437 <mark@...>

Subject: [ ] Is this the norm

Date: Saturday, August 22, 2009, 9:19 PM

 

ok, have been hurting for a few weeks, waiting to see what my

Dr wanted to try next. I I put up with the agony for a week till my Dr. Appoint.

Went to the Dr. In pain, pretty much decided to switch from remicade, she was

going to start me on Humira, they did not have any samples there so they where

going to get me one, well that has been a week ago. While I was at the office

she pretty much did not say much about me complaining of how much pain I have

been in, just looking to switch the meds. So here is what goes on, at night my

shoulders and elbows hurt so much I can only lay on my back, I think I spend the

whole night waking up becasue I move and then it hurts really bad. So morning

comes roll out of bed ok. walking and moving around ok till about 1:00. then it

all goes down hill. feet start wrists feel like knives going into them, fingers

swell, shoulder s arms, knees. I sit untill my knees are on fire, then I

struggle to stand so I

can get my knees back, then I have to sit again because my feet go. Does this

sound familiar to anyone? Am I maybe doing to much in the mornings to aggravate

my body, and then paying for it in the evening. new to this arthritis thing,

trying to figure out the norm.Thanks for all of the previous replies, and

hopefully when I get it figured out I can assist others.

Mark

[Guest guest]

In the beginning half the battle is trying not to be so anxious about everything

that goes with the diagnosis. I found the Group to be very helpful. When I was

first diagnosed I was prescribed Indomethacin which was very effect for pain

relief and reducing inflammation . However, it is not a permanent solution but

something to take while going through the " rheumatologist " procedure. After a

year of RA and trying a lot of different things I found Tylenol Arthritis to be

very effective, you wouldn't think so but it is. I learned to stay away from

products like Aleve or Advil because they are very hard on your system. Hot

water, i.e. baths and showers help a lot. I haven't had very much relief from

ice in terms of RA. Try to stay positive and optimistic , that attitude can get

you along way. Hope this helps.

Stan

Seattle, Sun!

@ groups .com

Sent: Sunday, August 23, 2009 5:59:20 AM GMT -08:00 US/Canada Pacific

Subject: Re: [ ] Is this the norm

Hi Mark,

I was dx'd in December so I am new to all of this too.  I am trying to figure

it all out too and there seems to be no rhyme or reason to it in my case.  Your

description sounds like what I went through at first too.  When RA first

severely flared for me on Dec. 15, I went to my doctor who referred me to a

rheumy.  I had to wait 4 weeks to see him and was told to take Tylenol.  That

did not help at all.

I hope that you get relief soon somehow.  Take it easy on yourself when you are

feeling bad.  I hope that you have called your doctor to let her know how you

are hurting since you were last seen.

~Connie

From: mah437 <mark@ nevilleisland .com>

Subject: [ ] Is this the norm

@ groups .com

Date: Saturday, August 22, 2009, 9:19 PM

 

    

                   ok , have been hurting for a few weeks, waiting to

see what my Dr wanted to try next. I I put up with the agony for a week till my

Dr. Appoint. Went to the Dr. In pain, pretty much decided to switch from

remicade , she was going to start me on Humira , they did not have any samples

there so they where going to get me one, well that has been a week ago. While I

was at the office she pretty much did not say much about me complaining of how

much pain I have been in, just looking to switch the meds . So here is what goes

on, at night my shoulders and elbows hurt so much I can only lay on my back, I

think I spend the whole night waking up becasue I move and then it hurts really

bad. So morning comes roll out of bed ok . walking and moving around ok till

about 1:00. then it all goes down hill. feet start wrists feel like knives going

into them, fingers swell, shoulder s arms, knees. I sit untill my knees are on

fire, then I struggle to stand so I

 can get my knees back, then I have to sit again because my feet go. Does this

sound familiar to anyone? Am I maybe doing to much in the mornings to aggravate

my body, and then paying for it in the evening. new to this arthritis thing,

trying to figure out the norm.Thanks for all of the previous replies, and

hopefully when I get it figured out I can assist others.

Mark

 

      

    

    

        

        

        

        

        

        

        

      

[Guest guest]

Hi Mark,

Have you ever taken methotrexate? I'm sorry that you are in the middle of a

flare and hope that your doctor decides on something soon. I know that many

here recommend heat..(You do whatever helps when you are hurting) but I try

to stay away from it. Heat enhances inflammation and even though it feels

good for the moment and may help initially....for me it makes things worse

in a few hours. I just try to stick with the gel ice packs and whichever

pain product works at the time. I hope things turn around for you soon!

-Jackie

Aug 22, 2009 at 8:19 PM, mah437 <mark@...> wrote:

>

>

> ok, have been hurting for a few weeks, waiting to see what my Dr wanted to

> try next. I I put up with the agony for a week till my Dr. Appoint. Went to

> the Dr. In pain, pretty much decided to switch from remicade, she was going

> to start me on Humira, they did not have any samples there so they where

> going to get me one, well that has been a week ago. While I was at the

> office she pretty much did not say much about me complaining of how much

> pain I have been in, just looking to switch the meds. So here is what goes

> on, at night my shoulders and elbows hurt so much I can only lay on my back,

> I think I spend the whole night waking up becasue I move and then it hurts

> really bad. So morning comes roll out of bed ok. walking and moving around

> ok till about 1:00. then it all goes down hill. feet start wrists feel like

> knives going into them, fingers swell, shoulder s arms, knees. I sit untill

> my knees are on fire, then I struggle to stand so I can get my knees back,

> then I have to sit again because my feet go. Does this sound familiar to

> anyone? Am I maybe doing to much in the mornings to aggravate my body, and

> then paying for it in the evening. new to this arthritis thing, trying to

> figure out the norm.Thanks for all of the previous replies, and hopefully

> when I get it figured out I can assist others.

>

> Mark

>

>

>

[Guest guest]

I've learned to be a " whiner " to my rheumy. I kept telling him about the pain I

was suffering but no pain meds were offered other than being told that I could

take 2 Aleve instead of one. I wasn't sleeping at night as I could doze off but

the pain would wake me. Finally I explained to my rheumy that I wasn't sleeping

due to the pain at night and how it the lack of actual sleep was interfering in

my daily life. He acted like I'd never told him how I'd been hurting and

prescribed Vicodin 500s. Since then I've been able to use that only at night and

I'm getting some sleep. You might try being specific about how this pain is

keeping you from sleeping.

Dalanne

Illinois

>

> ok, have been hurting for a few weeks, waiting to see what my Dr wanted to try

next. I I put up with the agony for a week till my Dr. Appoint. Went to the Dr.

In pain, pretty much decided to switch from remicade, she was going to start me

on Humira, they did not have any samples there so they where going to get me

one, well that has been a week ago. While I was at the office she pretty much

did not say much about me complaining of how much pain I have been in, just

looking to switch the meds. So here is what goes on, at night my shoulders and

elbows hurt so much I can only lay on my back, I think I spend the whole night

waking up becasue I move and then it hurts really bad. So morning comes roll out

of bed ok. walking and moving around ok till about 1:00. then it all goes down

hill. feet start wrists feel like knives going into them, fingers swell,

shoulder s arms, knees. I sit untill my knees are on fire, then I struggle to

stand so I can get my knees back, then I have to sit again because my feet go.

Does this sound familiar to anyone? Am I maybe doing to much in the mornings to

aggravate my body, and then paying for it in the evening. new to this arthritis

thing, trying to figure out the norm.Thanks for all of the previous replies, and

hopefully when I get it figured out I can assist others.

>

> Mark

>

[Guest guest]

Shoot, I complained to my OB/GYN and my Endcrinologist for almost a year before

they listened to me. I cried when I got to the Rheumy and she just put me on

Enbrel and MTX (after some trepidation). I am the one that sought out and asked

for a pain management specialist and demanded the referral. What a relief that

was.

Why arent they attached to each other (Pain Mgmt and Rheumy's) I will never

know, but the Pain Management Specialist was a god-send, she gave me pain

patches, NSAID patches (Flectors, I am in love with them) because the patches

dont mess with your stomach.

Demand a referral. We should demand that they meld the specialities.

OKD

[Guest guest]

thanks for all of the replies, my wide had mentioned that I should persue some

pain management.I have not wanted to take prednisone now because I want to see

if the Humira has an effect. I will be getting the first injection tomorrow. I

did stay home from work today. Yesterday I could just about not walk by noon. I

have been out in the field working, tomorrow I have to go and continue the same

thing, just go until I can't anymore andif I need to take Thursday off I will. I

do have a big bottle of vicodin I have been taking two a day. Due to some other

medicat problems I am very limited on pain medications that I can take on a

regular basis. Today though I have been taking it easy sitting a lot and walking

some. by late afternoon things seemed to escalate again it is very hard to

sleep, both shoulders are very stiff and painfull, can only lay on my back very

carefully. I have a brace for my right wrist that helps a lot when that wrist is

acting up, I really need one for the left this week. At least there is one

person at work that gives me a hand with things, her mother-in-law has RA and

she knows first hand the troubles she has, so that makes the day better. SO I am

going to take some pain meds and start the Humira tomorrow and see what happens.

thanks again for all of the replies, it is really helping me understand what I

can do and what I may have to adjust to.

Mark

>

> OKD, I agree whole heartedly!! It took my internist forever to refer me to a

> pain mgt doc. I didn't have a rheumy at the time. My RA however, was staying

> under control w/mtx (but am now on Enbrel also yipee!!) But I guess what I

> don't get is these doctors, rheumy, etc, go into that field knowing they are

> going to be dealing w/people that are living with a chronic condition. A

> chronic, painful condition. In knowing that, why aren't they more likely to

> recognize how bad the pain is? My ex-rheumy wouldn't give me anything but

> darvocet. I told him it was a crock. That I wish HE would walk in my shoes

> just one day. Nae TX