FLARES

February 11, 2002

Gayle, I believe in California that there was a law passed saying that patients are to be given pain medication when they feel it is necessary to function.

debby

Re: [ ] Re: Flares

Joanna,What pain meds do you take? I had to battle my docs to get pain meds as one doctor tells me I am too young to be taking pain meds. every day. I take pain pills every morning I have to to get out of bed. This one doctor told me that they are worried I will become addicted. At that point why do I care. I only take my pain pills like you when the pain gets worse. Finally I have a pain contract with my Primary and they will do refills when I need them instead of having to go to the doctor to prove my pain. I also know from University they have signs everywhere that we should not have to suffer pain that there are many pains medications out there to help. They also tell me that someone with chronic pain cannot get addicted. I feel no high and all I want is for the damn pain to go away.gayle/trans.6-99galye@... bmb

February 11, 2002

Surely, however, can't doctors have patients sign a paper that says THEY want it and not the doctor perscribing it? How I wish the legal system would not have gotten so involved in the medical profession...not to say they don't need to be, but for the most part, most doctors are good.

debby

Re: [ ] Re: Flares

In a message dated 2/10/02 5:44:03 PM Pacific Standard Time, galye@... writes:

Debby, And it should be that way. I will never understand docs saying it is addictive for us it doesn't matter we are taking several drugs and stuck sick for the rest of our lives anyway. gayle/trans.6-99 galye@... Remember that in part they are covering their ass. If a doctor becomes suspected of prescribing pain-killers too freely, he or she can be in a very bad situation for a long time. Harper

February 11, 2002

Hi Debby I know just how you feel to be made to feel like a drug addict when you are in pain and need some understanding and help. It has happened to me when I have been to the ER so now I make sure I always have someone with me to explain what the problem is. Then the questions start How did you get that? ect ect. My husband called the Dr out on Sunday a locum came who I had not seen before, he wasn't interested in the fact that I had recently had a large stroke he was more interested in the AIH he hadn't meet anyone before with our problems I felt like a new toy for him to play with at least it kept him happy fo a while. Anyway Debby look after yourself and try and find sometime for one special person YOU .Take care thinking of you . Jeanette UK AIH 1998 Cirrhosis 2001

tdcc <tdcc2000@...> wrote:

Joana...it is really frustrating when we are thought to be "drug addicts" and all we really want is pain relief.

I remember when I was in college and every other "month"I was in such pain that I could not function. One month, my roommates took me to ER. THe ER doctors looked at me, and told my friends to take this "junkie" home. I cried all the way home! I was in so much pain. Well...several years later, when I had exploratory surgery, they found a uterine tumor....some junkie!

But those were the 70's and many WERE junkies looking for a fix in ER. I just was not one of them. Now, there is a new law that says we MUST be cared for. If we become addicts, then WE are accountable...not the doctor's. It will take much monitoring on our part, but we can function better if we are not in pain.

I didn't get up out of bed until 9:30 today, and missed Sunday School and church. Hubby went. I miss not going. But so far, the pain seems to be lessening. It better get all better today, for I must take care of Mom tomorrow. She is supposed to go home from the hospital tomorrow, and my chores will begin again! However, at least she will have someone who can do her laundry when she goes home. I have to do it when she is in the hospital. I hope this is the LAST time she is in the hospital for a while...Dang...it will be 29 days since January 7th! This is getting rather old for her! I am happy that she is getting to come home!

debby

[ ] Re: Flares

Gayle and Debby,I had to demand pain meds for my fibro also. I don't take them unless I really need them. And, I proved this to my dr. when she saw that 1- 30 da prescription lasted me for 4 mos. My pain is mostly in my middle back and neck, is with me constantly and some days/nights almost unbearable. Some days, it is like you said, even being touched by someone is terrible. Now, with the AIH, I take pain meds even less because I don't want more harm to my liver. It is that vicious circle- what do I do- relieve the pain or harm the liver more?I hope your pain goes into remission soon.Hugs,Joanna> Debby,> I think that flares don't necessarily mean your labs go up or down. When my > Fibro flares. I can't stand the pain. I had to go to the doctors several > times trying to get something for the pain. They are giving me arthritis > meds. but it is not enough. Finally one day I went in in a flare and demanded > they give me pain medication, told the doc that I should not have to be in > this much pain. Even touching me hurt. I get so sick of feeling like I have > the flu. So I did get oxycodone that seems to help, not totally because I am > still in pain but I can live with this. And not happily because I can't find > a way out. I have flares most of the time takes forever before it lets up. > > gayle/trans.6-99> galye@a... bmb

February 11, 2002

Galye I agree entirely it is not to much to ask to go through the day without pain.Jeanette UK

galye@... wrote: Joanna,What pain meds do you take? I had to battle my docs to get pain meds as one doctor tells me I am too young to be taking pain meds. every day. I take pain pills every morning I have to to get out of bed. This one doctor told me that they are worried I will become addicted. At that point why do I care. I only take my pain pills like you when the pain gets worse. Finally I have a pain contract with my Primary and they will do refills when I need them instead of having to go to the doctor to prove my pain. I also know from University they have signs everywhere that we should not have to suffer pain that there are many pains medications out there to help. They also tell me that someone with chronic pain cannot get addicted. I feel no high and all I want is for the damn pain to go away.gayle/trans.6-99galye@... bmb

April 3, 2002

Ann Bell,

If you have RA but no flares, you are lucky -- or you may not have RA. One

of the characteristics of RA is that the inflammation comes and goes. One

some days your pain may be barely perceptible, on other days it may be

acute, which is called a flare. Flares can be triggered by the weather, by

certain foods, by medicines, and presumably by other factors, such as stress.

With the antibiotic protocol (AP), which works for about 75% of people with

RA, flares decrease in frequency and becomes progressively milder over the

course of months. After a year or so on the AP, RA pain is greatly

decreased until you are virtually symptom-free -- but never totally

symptom-free. One of the first signs that the AP is " taking " is a prolonged

flare which may last up to several weeks. This is a good sign and is called

a Herxheimer reaction.

Morning pain is one of the symptoms of RA. You did the right thing by

getting off Plaquenil, which has marginal effectiveness and can cause

blindness.

Sincerely, Harald

At 05:00 PM 04/03/2002 -0800, you wrote:

>This message from Ann Bell should have been directed to

>rheumatic .

>

>Hello, I was just wondering why people talk about flares, and I have pain

>all the time except in my sleep. My Dr. says I have RA, but so far I

>haven't had any medication that has helped. I took Plaquenil for 5 months

>but didn't see any improvement, so I stopped recently. Could you please

>help me to understand why my is all the time, and not in flares? Please

>answer if you have time. Thank You and Best of Luck to you!

> Ann Bell

>maryannbell@...

November 17, 2002

Last April my flare was so bas they put me on a morphine drip in the hospital and I am still taking morphine at times at home.

the WV hillbilly

November 17, 2002

Last April my flare was so bas they put me on a morphine drip in the hospital and I am still taking morphine at times at home.

the WV hillbilly

November 17, 2002

Oh , how terrible that you had to have a morphine drip! I cannot take morphine for I am totally allergic to it. It must be very frustrating to still have to depend on it. Were you able to function at work at all? I am really struggling to stay at work. There is NO way that I could be pregnant, yet, it seems as if there is a baby growing under my right rib and side! No buldge, but just a very very big feeling! Oh well....guess this is just something that is a part of the disease.

debby

Re: [ ] Flares

Last April my flare was so bas they put me on a morphine drip in the hospital and I am still taking morphine at times at home. the WV hillbilly

March 9, 2003

Hi Sharron, I don't think you are crazy. I went on short term disability

after the first onset of pain - I didn't understand how much more I needed to

rest, so it wasn't a " flare " per se...it lasted about 6 months! I am now

considering partial disability...I seem to do better when I am working about

5 hours and have time to rest in the afternoons (less flares). I'm also not

a good candidate for many of the drugs, so I will need to find another way to

manage this thing. Check with your disability insurance if you have it at

work...I've convinced myself that I don't need to be a martyr with this

disease, I just need to figure out the best way to live with it, and I'm not

sure with the fatigue that we have that its realistic to work full time....

March 9, 2003

In a message dated 3/9/2003 2:52:59 PM Eastern Standard Time,

sharron@... writes:

> i dont think my doc, employer or family really appreciate my

> situation and think i should rise above it and get back to work/life

> like normal people. am i crazy?

I don't think anyone quite understands the way we feel, other then those of

us who have been through it. I worked for a doctor for 15 years and then

went on disability for a few months after knee surgery. His wife would not

take me back because in her words, " I'm afraid to have you come back and

then feel guilty to ask you to do things you can't do. " I was a medical

assistant and cannot be on my feet too long. I have a 23 year old daughter

who still lives at home and calls me lazy for not working. Believe me, I

really empathize with your situation. I don't know if there are any

employees who would put up with coming and going with a flare up. If anyone

here has one like that, you are very lucky.

Janet

March 9, 2003

You are not crazy. Because we (who have severe arthritis)

look " normal " , other folks all too frequently think we are lazy,

faking, you name it. You're not alone in this, for what that's worth.

There was an article everal years ago in Time magazine which talked

about this issue.

Talk to your doctor about the disability issue. One of my docs told

me to consider going on disablity; don't feel guilty about doing so,

if your condition warrants it.

You didn't mention whether you have been prescribed pain medication.

If it weren't for those, I'd have had to quit working long ago ( &

probably have considered whether I really wanted to hang around on

the planet...). Would such meds help?

Hang in there--you're not alone.

> I have been on MTX for 5 months, and arthrotec, while previously i

> had one flare after another it seems, all involving different parts

> of my body ie: clavicle, wrist, chest wall, sternum, hips

>

> no on the meds, i have my flares approx 2.5 or 3 months apart.

> usually bad enough to keep me from work for a week or so.

>

> my question, (my rheumy is very hard to get to see) is the goal of

> meds to stop the flares, or lessen the intensity, or what?

> I fear that i will lose my job, as i am anable to fullfill my

> employment obligations full time it seems.

> has any gone on disability with this disease that comes and goes as

> these flares do,, I do quite alright when i am not in pain.

problably

> overdue things ie: housework that gets neglected when i am " down " .

> i think the depression itself lingers longer than the actual flare,

> making things very hard to get around to doing.

> i dont think my doc, employer or family really appreciate my

> situation and think i should rise above it and get back to

work/life

> like normal people. am i crazy?

March 10, 2003

That's a very good question, Sharon, I was wondering that myself.I

have just had one severe flare-up recently, which left me barely

able to do my job. I did it because I had to, but it wasn't easy.

Now that it's settled down I can almost do anything with my hands

and I feel great. How do you get disability if you're not disabled

all the time? The thing about PA is that when you're having a flare

up it's BAD and when it settles down, you feel so much better (even

though you may still have a little pain) that you're almost giddy

and like you said, you tend to overdo. Hope you all have better days!

> I have been on MTX for 5 months, and arthrotec, while previously i

> had one flare after another it seems, all involving different

parts

> of my body ie: clavicle, wrist, chest wall, sternum, hips

>

> no on the meds, i have my flares approx 2.5 or 3 months apart.

> usually bad enough to keep me from work for a week or so.

>

> my question, (my rheumy is very hard to get to see) is the goal of

> meds to stop the flares, or lessen the intensity, or what?

> I fear that i will lose my job, as i am anable to fullfill my

> employment obligations full time it seems.

> has any gone on disability with this disease that comes and goes

as

> these flares do,, I do quite alright when i am not in pain.

problably

> overdue things ie: housework that gets neglected when i am " down " .

> i think the depression itself lingers longer than the actual

flare,

> making things very hard to get around to doing.

> i dont think my doc, employer or family really appreciate my

> situation and think i should rise above it and get back to

work/life

> like normal people. am i crazy?

March 10, 2003

Sharon & ,

You guys are singing my song. I didn't realize how much everythings was

affecting me, until I went to the Dr. today, and the first thing he said was "

You look Great " . I just broke down and cried. My throat is so dry & sore I

can hardly swallow, major mouth sores, severe pain and fatigue have be

dragging. I really try to make it a point to go to work every day, but it

really is getting to me. The only thing I can do is work. My Dr. is trying

to get me an emergency appointment with Rheumy for the next 2 days, because

he says part of this is the disease and part is from the meds. He wants a

specialist to help me. It is getting really hard, I cannot eat solid food,

only liquid. so I feel like I am getting weak.

Sorry for going off, please keep posting and let me know what you find out.

Thanks,

Carol M

March 10, 2003

Hi Carol,

You mentioned you have a very sore throat...I know has written about

that too...I am in the midst of a horrendous flare, and have had a sore

throat the whole time...does anyone know if there is any kind of connection?

I went to the rheum and she thought maybe something is up with my thyroid,

but its not swollen. ???

But I can tell you Carol, I did fine working part time, but as soon as I got

back to full time (50 hours for me), I started to flare again. My rheumy is

convinced that I will be in remission for a longer stretch of time if I drop

back to working p/t. She is somewhat unconventional, but her theory is that

the flares are somewhat controllable through adequate rest (which for us

means extra rest, even when in remission) and daily exercise. So far, for

me, that's been true. Hang in there!

March 11, 2003

In a message dated 3/11/2003 3:42:01 AM Eastern Standard Time,

rachelviognier@... writes:

> But I can tell you Carol, I did fine working part time, but as soon as I got

>

> back to full time (50 hours for me), I started to flare again

All I can say is that I have not been working since September due to knee

sugery. In January they told me not to come back to work. My P has never

been better then now. It was flaring on and off for 17 years and it is the

best since I am unemployed. Too bad the PA doesn't follow the same pattern.

Janet

March 11, 2003

Group,

I have an emergency appointment with my Rheumy at Stanford University Medical

Center on Thursday, at 4:00. I had to arrange to get someone to drive me (2

hrs driver one-way) extremely exasperatting to have to ask for a ride when I

used to be able to just hop in my car and go#@%^#$ & $ My Throat, neck,

shoulder and upper back are extremely painful. The Lortabs and Vicodin ES do

nothing to take it away. I am trying to drink more water, and constantly

chew gum(which irritates my jaw) until I see the Dr. I do not take

Soriatane, don't even know what it is for. I take MTX, Celebrex, Plaquenil

and Prenisone. I actually tried to have a pity party today, but no one would

join me, so I just had a good cry and changed my mind. My emotions are right

at the edge. I have lost 7 pounds and not getting much sleep due to pain for

the last 2 weeks. Hope something happens that stops this.

Gentle Hugs,

Carol M.

March 11, 2003

Are you on Soriatane? That can cause the mouth problems that you describe. Try

something else if that's the case. It's disadvantages mostly outweigh it's

advantages.

Dandcmayer@... wrote:Sharon & ,