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I am seen by a wonderful primary care doctor. She is on vacation for 3 months and is traveling italy. YAH for her...................BUMMER for me.

Right before she left we were increasing my dose of oxycodone from 20 to 25 since 20 was not helping any more. She had also said that this is normal for some one who has been on it for a while like me for our body to start to build a tolerance. We were going to try 30 if 25mg elexir did not work. Well 25 did not work and 30 30 did. Anyways SO I was taking 30 mg 4 times a day. Then because I lost the last three of my bottom teeth and got dry socket in every one I was taking the oxycodone 30mg every 4 hours for my pain.

I went in Fridayto get my new motnhly precribtions from the new Doctor and she started asking me like a gazzilion questions and it was bothering me. She was even hinting around to being a bulimic and anorixic. Oh GEESH I am on a gastro paresis diet. So we know how little we eat and how it is all bland foods. That does not make me anorixic. OMG I was appalled by this. I am not there for her to diagnose me, I have my diagnosis. She is just to be there while My Primary is gone and ;) I am their to have her disepnce my monthly meds until my priimary comes back.

So tonight I go to take my 30 mg and I noticed that she cut it back to 20 mg. ARGH I am SO fricken pissed. Not only amI an SO much pain I wasn to crawl out of my skin I am angry she lowered the does. Now Ihave to call the my Primary care docotrs nurse on Monday and ask why she did that.

SOmy question is. What are, our rights as apatient to haev our pain managed to make t threw our day.

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Hello Hopeful girl..............yep, pain management is a 'nasty one'

I to take oxycodone at 20 mg ..........BUT and this is where you need to speak to you doctor ..........I take it every 12 hours on a slow release !!!!

its SOOOOOOOOOOOOOOOOOO much better like this as you dont get the 'up's and downs ' , which is possibly why you feel you need to increase your dose.

The reason your doctor is worried about your weight is that Oxycodone is a 'controlled drug ' and can make you anorexic or bulimic its a derivative of opium ( I think) not a drug to play with as its very addictive , as for the skin crawling, I'm afraid its all part of not getting the drug ............ you may get sweats, dry mouth ( even more) and shivers , possibly seeing things as well and anxiety ............lovely inst it ( NOT )

what you also need to do is when you do to the doctors tell them that you would to have this painkiller as it is the only one at this time that controls your horrendous pain.............dont say 'I need it' because girl you will sound like you have to have it because you are 'coming down' and cant stand the side effects.

Try explaining to your doctor that taking it every 4 hours isn't enough and ask if you can have some slow realise ones at 20mg to try them, you have nothing to loose.

I know how hard it is to get on with everyday things when all you can .........see hear and think about is pain, pain, pain, but it can be done. Dont let the pain over take your life, its your body and it is just an annoyance to be pushed away to let other more important things in.............I know , I suffer like you .

I hope you can get this sorted out soon, thinking of you, and wishing I could give you a big hug , sit down and have a coffee and a natter about putting the world to rights ............that will take your mind off it , or make you laugh at my crazy attitude to life .................Willows XXXXX

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My doc bumped me up to 40 mg on slow 12 hour release--it worked great except for the fact that I can't sleep on it--gives me racing thoughts and my body gets tired but my brain wont SHUT UP. So, I went back down to 20mg slow release. Also, I stopped going to my primary for pain meds--I go only to my pain management doc and I see him every 4 to 12 weeks--depending on how many weeks he writes the rx for. In order to get a refill, I can't just call, I have to go in for a visit.

If you've not tried slow release, it would be something to ask your doc about--however, if you're on elixer, I'm guessing you've had problems with the pills? You have a right to adequate pain control according to both your rights and your doctor's ethical code according to the AMA--and a federal lawsuit out of California emphasized it a few years back. A doc was sanctioned for failing to give adequate pain meds to a cancer patient who was dying and was in agony. There is NO reason that you should have to "just deal with the pain" when there are meds that can help you.

If you can't take the pills and the doc won't give you the 30 that worked, you might want to ask about a different method of delivery, such as a transdermal patch. I think one of them is called "duragesic"? I had a friend who used a patch with good results for years while she was in a gastroparesis crisis--not sure what kind though. She's doing great now and no longer needs the patch, but I remember her writing to me about how relieved she was when they finally got her meds right.

nina

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What about talking to the person treating you for the teeth problems and they will give it. Otherwise each physician has to prescribe according to their own bias. Some of my husbands colleagues think he prescribes too many controlled substances. He says da n it they are in pain. I would talk to the director of the clinic//????? Miriam

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Hello Willows. I have to admit I enjoyed your post and yet it also hit a nerve. Let me explain why ok ;-).

I am sorry to say I feel as though you have mistaken what I have said in my post. I do not have anxiety and I did not say I felt like my skin was crawling. I said I was in so much pain I wanted to crawl out of my skin. Meaning the pain was so bad I did not want to be in my body and feel it any more if that makes sence.

I do not have anxiety. What I have is electrical surges and feel like I have either had way to much caffein or feel like I am on speed and that is why I take xanax an that has worked wonders for that. That has been going on WAY before i was on pain meds!

I take the elixer because I throw up so much. And the elixer I take is the strong stuff it is 20mg per 1ml. So basically it pretty much absorbs once you drop it in your mouth. I do know the affects from narcotic drugs. And I understadn the differance between addiction and dependance.

As I mentioned I have an awesome primary and we discuss every thing. BUT as I MENTIONED. She is gone for 3 months so I have to explain my case over again to some one who is VERY ignorant to our problems. She KNOWS nothing about autonomic neuropathy, Dysautonomia or even fibromyalgia or POTS. She even admitted that. So that is her issues NOT mine. so I know she is NOT concerned about the narcotic drug causing anorexic or bulimia. She was trying to diagnose me and place the blame on some thing else. You had to be there and if you were there you would know.

Also I do know what to say and not to say. I feel like you are almost justifying the doctor and to be honost I do not feel I need that.

See you keep referring to this person as MY doctor and try explaining this and that. She is not my doctor she is a fill in while my Doctor is gone. That is the frustrating part. There are many of us here who know the struggles with docotrs who do not understand this disease. That is what it is about. She knows nothing and is blind to all this!

All I needed is to know my rights as a patient for proper pain management so I can get the proper care while my PRIMARY doctor is gone.

Cheers

Corina

PS and I mean no offence by expressing what I felt.

Hello Hopeful girl..............yep, pain management is a 'nasty one'

I to take oxycodone at 20 mg ..........BUT and this is where you need to speak to you doctor ..........I take it every 12 hours on a slow release !!!!

its SOOOOOOOOOOOOOOOOOO much better like this as you dont get the 'up's and downs ' , which is possibly why you feel you need to increase your dose.

The reason your doctor is worried about your weight is that Oxycodone is a 'controlled drug ' and can make you anorexic or bulimic its a derivative of opium ( I think) not a drug to play with as its very addictive , as for the skin crawling, I'm afraid its all part of not getting the drug ............ you may get sweats, dry mouth ( even more) and shivers , possibly seeing things as well and anxiety ............lovely inst it ( NOT )

what you also need to do is when you do to the doctors tell them that you would to have this painkiller as it is the only one at this time that controls your horrendous pain.............dont say 'I need it' because girl you will sound like you have to have it because you are 'coming down' and cant stand the side effects.

Try explaining to your doctor that taking it every 4 hours isn't enough and ask if you can have some slow realise ones at 20mg to try them, you have nothing to loose.

I know how hard it is to get on with everyday things when all you can .........see hear and think about is pain, pain, pain, but it can be done. Dont let the pain over take your life, its your body and it is just an annoyance to be pushed away to let other more important things in.............I know , I suffer like you .

I hope you can get this sorted out soon, thinking of you, and wishing I could give you a big hug , sit down and have a coffee and a natter about putting the world to rights ............that will take your mind off it , or make you laugh at my crazy attitude to life .................Willows XXXXX

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Hi Mighty Mouse. My docotr and I are planning a trying a few things after I go to the Mayo Clinic. We just feel we need to keep things as they are until after my apointment. We are going to maybe try neurontin to start. That has helped some people with pain and then they do not need so much pain meds. So we will see. Butbecause it does alter things in your system she and the doc at themayo clinic said not to change any thing rightnow.

I go to the Mayo clinic Spetemeber 25th for two weeks. So we are just keeping theings on track. I figure if this temporary doctor does not want to help me then I will go to my gastro Doctor and let him know what is going on.

I tried one time release along time ago. I am not sure what it was now but I can find out and I had a bad reaction to it. What is the AMA?Some thing medical assosiation?

I have takent the patch. This one other doc tried the 50 mic fentynal patch and it did nothing for me. I would have to have the 100 and since she did not knwo me well she would not prescribe it for me and that was right after my doctor left.

See here is my issue. My Primary went a way and all h**** broke loose. I finally lost my j-tube. I was doing the elixer threw that and most all my meds. Well then I was placed on a port. Then I got serious sepsis and was in the er and hospitol for week on some serious antibiotics and I blew out 20 veins in my arms. They said it was because of the antibiotics. I have never had that happen before from iv's placed. Now I have a picc line and just found out I have to go threw iron infusions 1x a week for 5 weeks because I am very iron anemic and my potassium has been low. I swear I was jinxed since she left ;-). So it has been absolute H**** for me and my pain has also been higher than it has ever been. Frankly I had the most god awful stay in a hosptiol ever. I had never stayed there before and they were all older nurses and I do not mean to be judgemental or any thing. But I think they were old and burnt out because they were all mean an rude and unfriendly.

Thank you SO much for your information Mighty Mouse.

Night

Corina

My doc bumped me up to 40 mg on slow 12 hour release--it worked great except for the fact that I can't sleep on it--gives me racing thoughts and my body gets tired but my brain wont SHUT UP. So, I went back down to 20mg slow release. Also, I stopped going to my primary for pain meds--I go only to my pain management doc and I see him every 4 to 12 weeks--depending on how many weeks he writes the rx for. In order to get a refill, I can't just call, I have to go in for a visit.

If you've not tried slow release, it would be something to ask your doc about--however, if you're on elixer, I'm guessing you've had problems with the pills? You have a right to adequate pain control according to both your rights and your doctor's ethical code according to the AMA--and a federal lawsuit out of California emphasized it a few years back. A doc was sanctioned for failing to give adequate pain meds to a cancer patient who was dying and was in agony. There is NO reason that you should have to "just deal with the pain" when there are meds that can help you.

If you can't take the pills and the doc won't give you the 30 that worked, you might want to ask about a different method of delivery, such as a transdermal patch. I think one of them is called "duragesic"? I had a friend who used a patch with good results for years while she was in a gastroparesis crisis--not sure what kind though. She's doing great now and no longer needs the patch, but I remember her writing to me about how relieved she was when they finally got her meds right.

nina

Hi Miriam. That is not abad idea. however my teeth are not aproblem any more. SO I have a feelign he would not be comfortable with it. I will try my gastro if i make no head way with this temporary Doc ;-).

Night

Corina

What about talking to the person treating you for the teeth problems and they will give it. Otherwise each physician has to prescribe according to their own bias. Some of my husbands colleagues think he prescribes too many controlled substances. He says da n it they are in pain. I would talk to the director of the clinic//????? Miriam
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Guest dionna

you mentioned neurotin and i was just wanting to let you know that is the only drug that has helped. it was wonderful but i also developed a tolerance to it. i have been off of it for a while but i think i am going to try it again to see if it will be my miracle again. i wish you luck in finding a better way to manage your pain.

dionna B)

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Corina, AMA stands for the American Medical Association. I did a search on patient rights and pain control/pain management. This site seemed to have particularly relevant info:

http://www.painlaw.org/opioids.html

I think you need to be direct with the substitute doctor:

Your doctor already has provided you with a diagnosis and you are simply looking for continuity of care. If she can't handled that, then perhaps you could request another opinion or a consult to a pain specialist.

I hope you can get everything settled down so you're comfortable soon. Nina

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Ok...this post kind of took me a little off guard. I had no idea that people could take pain meds like this and it be ok. Geezzzz...I would not even want to imagine the pain you all must have. First...my sympathies to all of you who are dealing with chronic pain.

I have had to deal with a little bit of this with many Doctor's while my Doctor has been on vacation and the only thing I can tell you is....the Doctor filling in for your PCP has an obligation to continue treatment as prescribed by your PCP. I would call them immediately and first ask if this was a mistake (which we all know it wasn't...this fill-in probably just has a God complex). Then proceed to explain to them that this has been your treatment for _____ and it can NOT be changed without the supervision and advice of your PCP. If the fill-in has a problem with what you are being prescribed...they need to take it up with the Doctor and not put you through **** over a disagreement of treatment.

I really do not see another way to get this prescribed except through your PCP or fill-in so I would call the office until they give you what your body needs to maintain. And if the fill-in is un-willing....is there someone else within that office, another Doctor, that you could try next?

Good Luck and I am so sorry that you are in so much pain!

Susan

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First off thank you very much mighty mouse. That is what I needed you rock ;).

That givce me ammo and also think things threw on how to aproach her. And if she does not want to help coninue my regimen already sextablished by my Pc then I will try another Doctor in the office or my Gastro Doctor. See my primary thoughtit best to hold off on the pain specialist until I get back from the Mayo. She felt and also my Gastro to just continue what I have been righ tnow and thatit is to soon before going to the mayo to switch any thing especially to neurontin or another kinda of med like that I hear can also work. I just do nt remeber the name. SO that is definateyly an opption that we were trying to wait on. But Imay have to for now and let the pain managemnet specialist aware of the importance ofNOT changing any thing until after the mayo.

Night Mighty mouse ;-)

Corina

Corina, AMA stands for the American Medical Association. I did a search on patient rights and pain control/pain management. This site seemed to have particularly relevant info:

http://www.painlaw.org/opioids.html

I think you need to be direct with the substitute doctor:

Your doctor already has provided you with a diagnosis and you are simply looking for continuity of care. If she can't handled that, then perhaps you could request another opinion or a consult to a pain specialist.

I hope you can get everything settled down so you're comfortable soon. Nina

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Shayden awesome suggestion. I will definately being using this inofmration you guys gave me.

I just new there had to be a paitents rights as to NOT having to suffer so badly.

I know doctors have to watch thier backs these days. Because of the huge abuse of narcotic drugs. But for those of us who need need it to make it threw the day it is not fair that others have to ruin ir and make it more difficult!

They are being watched by thier practice and also the pahrmacy etc...............so I do understand there situation. However when you have a patient who has proven them selfves time and time again I and I do not look like I was strung out on Drugs. Then I reallythign they need to take eveyr thing itno consideration. What floors me about this temporary Docotor. She NEVER went threw my file and leaarned about me at all.

I better get thank you again

Corina

Ok...this post kind of took me a little off guard. I had no idea that people could take pain meds like this and it be ok. Geezzzz...I would not even want to imagine the pain you all must have. First...my sympathies to all of you who are dealing with chronic pain.

I have had to deal with a little bit of this with many Doctor's while my Doctor has been on vacation and the only thing I can tell you is....the Doctor filling in for your PCP has an obligation to continue treatment as prescribed by your PCP. I would call them immediately and first ask if this was a mistake (which we all know it wasn't...this fill-in probably just has a God complex). Then proceed to explain to them that this has been your treatment for _____ and it can NOT be changed without the supervision and advice of your PCP. If the fill-in has a problem with what you are being prescribed...they need to take it up with the Doctor and not put you through **** over a disagreement of treatment.

I really do not see another way to get this prescribed except through your PCP or fill-in so I would call the office until they give you what your body needs to maintain. And if the fill-in is un-willing....is there someone else within that office, another Doctor, that you could try next?

Good Luck and I am so sorry that you are in so much pain!

Susan

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