Update From Claudine in Canada

[Guest guest]

I am sending this to the board for Claudine Gomes, a long time member who

lives in Canada. She can receive the posts but has trouble posting to the board.

She is having a hard time, and could really use some support.

(I have been off the board for some time, myself, and will send my own

update, shortly.)

Karyn E. , RN

Executive Director, PA

From: Claudine:

I decided that I was going to quite my GP of over 20 years and my third GI

that treated me finally when I begged my GP to send me to a new GI after the

last one that did my Gal-bladder removal wasn't helping me and suggested I get

my

sternum shaved. Even after I had classic symptoms of acute pancreatic

attacks and landed me in the ER close to 30 times with again textbook classic

symptoms.

This new GP is a young guy and I heard good things about him, he's closer to

me so I don't have to loose so much work losing a half day to go see my old GP

that took me 45 min. to get there. Any how let me explain to you how this

one is dealing with me....

He is very nice guy probably late 30's to early 40's has decided because of

my current state of anxiety and depression because of not being taken seriously

and not being prescribed pain meds so that I don't have to keep going to the

ER and being treated as if I was some drug addict before I had the evidence

to show them I was in the hospital for 1 month with severe acute pancreatitis

now they take me a bit more seriously but not much. Pain meds, don't think

it's pancreatitis because your levels are normal and when asked if they checked

my Triglycerides the nurse didn't know and the doctor when I asked, never came

back to tell me and I was dismissed after 5 hours.

He is prescribing PMS-Clonazepam-R 0.5 mg for (anxiety) 2 before I go to bed

and 1 during morning which didn't help me so it was upped to 2 during day and

still I felt nothing, then upped 2 in morning and 1 in afternoon and l - 2

about 8:30 PM before I go to bed at 10:30 or 11 at night. I don't feel any

different and it doesn't seem to help me which I told him. He says I'm so wired

that it is why it's not working but will eventually work. Asked me before

prescribing this when was last time I slept through the night, I said I can't

remember and get up on average between 6 and 10 times a night.

He also prescribed Wellbutrin SR 150 mg to take 2 pills in the morning about

8:30 am when I supposedly get up. It is going onto 6 weeks and I don't feel a

difference. This is all because also I don't want to socialize with anyone,

I don't want to leave the house, getting up to go to work is a struggle and

makes me very anxious with a racing heart. I don't want to go to be around

people in my close group of friends and just want to crawl under a rock.

No one seems to take me seriously and I'm appeasing this new doctor who

thinks because I haven't been sleeping that my chronic pain on my left side of

my

middle-upper back is worse because of not sleeping well at night which would

make my pain all the worse. So I'm going along. I had an attack here at home

pretty bad but not a 10 to land me in the ER since I'm so scared and paranoid

about going there. I only have Tylenol #3 which I take rarely since they make

me sick and tried to rock my self to sleep and all night with the pain that

kept me up for 5 hours. I slept all the next day and today is the third day and

I feel very wiped and weak with no appetite. After this I'm going to bed

again because I can't stay sitting up or stand because of the dizziness and the

overall sick feeling like having a bad flu. It's hard to pee as it always

happens after I've had an attack. I'm feel dehydrated but I'm not thirsty so I

force myself to drink at least 5 cups of liquid.

Does anyone else have a doctor that thinks your pain will go away after my

depression gets better and I sleep better and get my anxiety straightened out.

I wouldn't be in this position if my original GP would give me a proper pain

med as I've told him the roughly 5 weak ones he prescribed orally, injecting

10 mg of morphine (didn't touch pain), and two different suppositories one was

Dilaudid (3 mg) which made me sick and didn't help pain and now finally

Tylenol #3, which usually makes me sick. I and they at the hospital found I had

a

high tolerance for drugs it was apparent with the Demerol and the morphine

which Demerol didn't work at all and the morphine wasn't doing much better

because

it would take too long to work for me and would peak and drop too quickly.

I hate pills and have never had a history of drug dependency and only take

them when I absolutely have to. Most of the time I struggle which is everyday

if I was to go to the doctor they would think I was a hypochondriac but I go

rarely because I haven't got faith in them because they don't help me and so I

stay away hoping that when I go again or end up in the ER that someone will

prescribe me some proper pain meds. Hasn't happened yet, and I was told at the

ER recently that I should get on the Pain Clinic list for pain management and I

told them It was 1 year waiting list to see them and I needed help right away

while waiting. And so nothing, no proper pain meds so that I can take them

when I'm at my worst or when I do physical work which is what most of my job is

let alone trying to keep a house in order and trying to put something on the

table.

What do I do? I don't want to loose my job and just want to manage my pain

so that I can more through it and work to help pay bills. I don't want to be

blitz but I would rather be an addict if that's what they are afraid of. From

what I hear, if you have chronic pain, you don't become addicted. All I want is

some kind of normalcy where I don't have to lay on the couch for two hours

after I get home, before I can move again just to cook or do chores. And, even

then, I still move slowly because I am still in pain.

This is no way to live a life. By the end of the week I'm exhausted from the

pain getting progressively worse during the week. By Saturday, I can barely

get out of bed, often not until the afternoon. Sundays are the same. I jut got

married 3 years ago. Working all week in a lot of pain, only to spend the

weekends in bed in even worse pain because all I have is regular Tylenol, is not

fair to my husband or me.

When I was in the hospital I almost died. I told my husband I should have

died then. He deserves a better life with someone else. I would finally be at

peace and out of pain.

If this sounds desperate it is.

Claudine

clawdinegomes@...

[Guest guest]

Claudine,

I am just now reading your post. I was in the hospital from Saturday until

Thursday afternoon, so I am very much behind. I cannot imagine how hard this is

for you. I do think that giving the new doc's plan a short try is good so he

will see that you are being cooperative. However, I think you've given it long

enough. Yes, I do think that not getting good sleep, anxiety, stress, etc. can

make our pain worse. However, it is often the reverse - it is the pain and the

fear of having to just 'deal' with pain so intense that breathing is very hard,

that causes us increased stress, anxiety, depression, etc. I would suggest that

you set up an appointment for a 'heart to heart' with the new doc. Try your

best to maintain your composure and just let him know what a day for you is

like. Tell him about the hours curled in a fetal position unable to move

because the pain is so severe. I do think you should ask to be referred to a

pain clinic, but you need to let your doc know that someone has got to help you

get your pain under control until they can get you in to a pain doc.

Personally, I have found that the combination of a long acting pain medication

and then quick acting pain med for break-through pain works the best.

Currently, I take MS Contin 20 mg three times a day and Oxy-IR 5 mg 4 times a

day for break-through pain. MS Contin is long acting morphine. Oxy-IR is

oxycodone immediate release. I was taking Lortab 10 when I first went to my

pain doc. Lortab has hydrocodone (synthetic codeine) and tylenol. I was

diagnosed with autoimmune liver disease in January 2003, so my docs don't want

me to have tylenol on a regular basis. Many in the group use the duragesic

patches with good results. I intend to talk to my pain doc about the patches

because I've had times that I've had to go to the ER because keeping my pain med

down was not possible. I also have phenergan 25 mg tablets and 25 mg

suppositories for nausea. I take at least 2-3 phenergan tablets on a good day.

I have zofran for times when the phenergan doesn't keep the nausea at bay.

Zofran is a wonderful nausea med but it is VERY expensive. It's also a little

harder on the liver than phenergan, so I try to use the zofran sparingly.

My first attack of acute panc was in January 2000. After a rough year, things

got better for about 18 months. However, the attacks returned with a vengance

in July 2002. By October 2002, I'd probably been in the hospital 6 or 7 times,

maybe more. When I realized that daily pain medication was a necessity for me,

I asked my GP to refer me to a pain doc. I've been under his care since Nov

2002. At first I wasn't crazy about him. He didn't seem compassionate at all.

However, when I had my next appt with him, it was obvious he did care and he did

want to do what he could to help keep my pain under control. Even after my

first appt with him, my level of anxiety and stress was much improved.

Initially, he prescribed only 3 Lortab 10 tablets per day. I typically broke

them in half unless I was having pain above about a 5. Just knowing that I had

a set amount of pain available eased my stress and anxiety. Initially, I

actually needed less pain med than I had been taking prior to going under his

care. When he first told me that he would only prescribe 3 pain pills a day, I

almost panicked. I had been taking from 3-7 Lortab 5 tablets a day almost every

day for about 4 months at that time. However, since he gave me Lortab 10 pills,

it was the same as having 6 Lortab 5 pills each day. I think just knowing I

didn't have to beg for pain med any longer made things sooooooo much better. I

was still trying to work when I first went under the care of my pain doc. Even

though I didn't manage to work a full week from the time the attacks returned in

July 2002 until the time my disability retirement went into effect in March

2003, I managed to work a lot more days after going under the care of the pain

doc. My family, friends, and co-workers could all tell a difference in me.

Prior to knowing that I was going to be able to keep my pain at a tolerable

level more often since I had a certain amount of pain med available to me, made

all the difference in the world. I no longer had to stress over every precious

pain pill, taking it only when I could no longer even think the pain was so

intense. Until I went under the care of the pain doc, I lived in fear that my

doctors would all of a sudden decide I didn't need any more pain medicine and

then I'd have nothing at all to ease my pain. Don't get me wrong, there were

still many days that the Lortab 10 tablets didn't get my pain down to a

tolerable level. Many days when I couldn't keep the pills down because the

nausea was so bad. However, I definitely had less stress, anxiety, depression,

and worry once I knew that I had set amount of pain med available to me.

A good doctor understands that it takes a lot less pain med to keep pain at bay

than to let it get out of hand and have to take mega doses of pain med to get

the pain back to a tolerable level. Now that I have found the right doctors,

they are quick to tell me not to let my pain get out of control, if at all

possible. I still have the level 10+ pain that just seems to hit like a freight

train, often with vomiting to the point that keeping anything down is

impossible. Episodes of that magnitude almost always mean a trip to the ER and

often a few days in the hospital for 'gut rest'.

Over time, my pain doc has gradually increased my pain med as my disease has

progressed. I was diagnosed with chronic panc in June 2003 and it was shortly

after that I was prescribed the MS Contin in addition to the Oxy-IR. (I was

changed from 3 Lortab 10 per day to 3 Oxy-IR 5 mg per day in January 2003 after

my liver disease diagnosis)

As we all know, pain is very hard on the body both physically and mentally.

Knowing that you have to literally beg for every single pain pill is obviously

taking a tremendous toll on both your mind and your body.

By the way, my sister takes wellbutrin and her doctor told her to never take

more than 150 mg at a time because wellbutrin can cause seizures. She told her

to make sure she has at least 6 hours between the two wellbutrin tablets she

takes each day. She did tell my sis to take the first pill when she gets up and

then take the second one around 2:00 -4:00 p.m. because sometimes wellbutrin can

keep you from sleeping.

I hope you can get your new GP to work with you in getting your pain and nausea

under control - at least to some degree. I hope you can get him to understand

that if you are anxious, depressed, and having problems sleeping - it is from

both the pain and the fear of pain and knowing you have nothing to ease the pain

when it hits you. I have a feeling that once you can feel at ease that you have

medication to help control the pain, you will have very little problems with

anxiety, depression, or sleeping.

take care and let us know how you are doing.

W

alabama