Just Another CP'ers vent

[suede]

I wasn't going to post about this but I have been struggling with it since a week ago Thursday, it is a story though that has been told many times by those of us on opioids for CP.

I'm going on my ninth year with my CP issues along with other health issues.
I have had the same PCP since before this all started. He was always the most compassionate Dr I could have asked for and I have never had a complaint about him.

Til this past summer something happened I have no idea what be he was absent from the office for several months and it was all hush hush and word was he may not be back, it was like his name was a dirty word in the office, his partner was writing my scripts for me at that time.

He returned and since it seems he has gone to **** in a hand basket, he has become distant in his office visits and very negligent in his practice.
I had planned on talking to him about this on our next app. the 22 of this month. As he has even been negligent in my DH's case and now DH is looking at surgery(long story).

He was the one that said he would write all my scripts upon the recommendation of my PM so I wouldn't have to travel so many miles every month, however the last couple of months he became a real pain about it, when I would call for my refills the nurse would call and say they weren't due yet, I would explain they were and if needed I would bring my bottles over to prove it, she would then call back and apologize and say it was an error I could come pick them up,

Last Thursday I called as usual in the morning to pick them up as Fri. was my last pills. I got a call at 5:30 PM telling me he said he would not fill any of my scripts for me any longer, I was floored and was up all night worried, the next morning I called and left a message saying that it was wrong to leave me like that not only would my pain be unmanageable I would be in withdrawal.

I called my PM about 70 miles away they do no scripts on Fri. and none with out at least two days notice and do not do script refills when you are only on meds they expect your PCP to write tour scripts upon his recommendation, but the nurse would talk to the PM on my behalf and she would also call my DR to find out the problem.

In the meantime I get a call PCP's nurse telling me I can pick up a script for one week and that is all he will do, I thought my PM had called him, anyway I hurried over to get the script before he changed his mind, by the time I got back home The PCP'S nurse called and said I could come pick up my months scripts, I said what are you talking about I just picked up the weeks worth he wrote, she said he talked to my PM and wrote me a months worth, I asked if he was going to continue to do so, she said she didn't know I would have to ck. back..

I haven't called back yet I have an app. with him the 22nd I wasn't going to go, but I am I want him to look me in the face and tell me what HIS problem is. In the meantime I will start looking for a new PCP,I am so sick and tired of being sick and tired.

Sorry so long, I just need to get this out, I don't really expect a response just really needed to VENT, do Dr's and others think we get some kind of high off of these meds, do they think it is a joy trying to figure out how to pay for all these meds and to worry about not only the pain we live in but the effects of these drugs on our bodies, it is a lose, lose situation, you take them to try and have some quality of life and you get the life sucked out of for having to take them.
I have NEVER abused my meds, never asked for an increase and try to be as compliant as possible to not rock the boat, don't they see our lives have changed enough as it is and often days just getting out bed is not worth it,
maybe I need to start going to the Dr's like I look at home most days, like crap, only what little self esteem I have left won't allow that..

[GardeniaGirl]

Suede - that is horrible how your doctor has been acting....We are soooo dependent upon these doctors....and I feel it should be considered illegal to just drop someone without offering any explanation or referrals.

I mean- what are you supposed to do???

I can't imagine if my main rheumatologist went through a personality change like your docs -- It would be traumatizing for me, as he is my primary doc for 10 years! He writes all of my scripts and he is the only doctor who truly understands my complex history.

This dependency we have to endure is scary.

I hope you are able to get this resolved - I am very curious as to what has happened to your doctor to change his personality.

My neurologist had a major health crisis last summer and was out for 3 months. I can't remember what it was now, but even before that, he had always been very compassionate and nice.

He has been practicing 20 years.

When he returned, he said, for the first time, he had an actual experience of what his patients go through- that fear that we live with so often, the feelings of helplessness, loss of control, being dependent upon others -- and I could tell, this really affected him.....and he seemed even more caring toward me when he came back.

Anyway, just had to share that - I thought it was really neat to see a doctor develop true empathy like that.

good luck, and let us know what happens...

GG

[suede]

GG,

Thanks for the support, it is true that one can not fully understand that of which another goes through without truly going through a similar situation and then most often when their situation changes the often soon forget what it was like and return to the same behavior as before, so it is good your
neurologist has remained compassionate.

I have no idea what happened, I only know that the office refused to give comment and when he did return it wasn't to a full schedule, I believe he had a law suit or even got mixed up in drugs himself, though it is only speculation on my part.

When I told my PM's nurse what had happened she was shocked that he didn't give even 30 days notice. I'm sure part of the reason for their call was to make sure I hadn't broke any PM rules.
As far as I know this last full script may have been his 30 day notice but if it was he should have informed his nurse to tell me so.

I have never been one for confrontation. however I am really looking forward to my appointment and his looking me in the face with his answers.

Linda

[911]

WOW HOLY $%&# i cant beleive that this man is f&%$#@ up , i am so sorry i used to worrie all the time if i would be able to get to my docs to get my refils coz my ***** of a family doc wouldnt do it , at that time i didnt drive , i do now but now i live within 5 miles of my PM doc , i am so sorry you are going thru this , if you can i would get back in with your PM doc and see if you see them once every 4-6 months if they would take over your scripts and then just have them mailed to you , thats what i was doing , best wishes and i certainly hope this all works out , please keep us updated ,,,,,,,,,,dave,,,,,,,,,,,,,,aka,,,,,,,,,,,,911

[Mark N]

Linda, your vent is what many of us see in our nightmares. Doctors are people with people problems that run the whole gamut we go through. Any number of things would remove our doctors and it isn't easy to find a replacement to prescribe our meds. The doctors that prescribe our pain meds literally hold our life in their hands. Without our pain control many of us would have pain levels that wouldn't let us function and would create numerous health problems.

It would be nice if there were a class of doctors trained in opiate medication with a standard of treatment accepted by all so that we wouldn't be at the mercy of losing our own doctor.

Linda, I hope that you can make an easy transition with another doctor soon.

[sandi1016]

I am sorry that you are going through that. My PM just left the practice and I am going to have to see whoever they have to replace him in the office. I've been going there now for two + solid years and hope that there won't be the problems that I read so often about.
My old PM was very, very good about adjusting meds as necessary, and working with me to find something that was going to work adequately and not make me foggy or unable to function.
We did a switch from Oxycontin to Opana and I am not finding nearly the pain control that I did from the Opana at first on this stuff. So I think we will be having to change it to something else, which I am not looking forward to.
I hope that you can find the reasons behind his sudden change in demeanor but it sounds like he's had either a personal health issue to deal with or he's having trouble in some area (s) of his life that have contributed to his general lack of adequate care. I'm not sure that I wouldn't change to a new doctor in your circumstances anyway given that this standard of care seems to have gone into the toilet at this point.
Sandi

[houghchrst]

Suede, that is awful, what a hassle. As Mark said these docs are only human and maybe what he is going through is so traumatic and all consuming that he is unable to do what you need him to do. Family trauma, maybe something serious going on with his practice. I know it seems unfair when we are in such a bind and also have so many awful, stressful things going on with us and we put our very lives in their hands and it seems as though they do not have our best interests on their minds. You may want to start looking for another doc as soon as possible because it sounds as though he may be getting ready to leave. Maybe he is being investigated for some kind of medical issue. I hope it gets cleared up soon.

[911]

i know these doc's are only human BUT they are trained and paid alot to take care of us and to be able to put there human issues aside , perhaps this seems a lil harsh BUT we depend on these docs despite there own personal issues , we sandi and i have run into issues of our own with a doc at the local er and we are doing everything we can to make this doc eat his own words , i am not usually a spiteful person but this doc in short told me i would do well to loose sandra and have her out of my life , well sandra saved my life so to he%% with him and the horse he rode in on , sorry i didnt mean to make this about us but i meant to identify with your issues ,,,,,,,,,, dave

[gizmogirl]

I wouldn't even have CP except my doctor said that I was reporting subjective levels of pain for my hand tendonitis, when it was a broken neck and I begged for years for tests or x-rays to prove it. And when they mysteriously fired him, the new doc rushed me to x-rays and lamination surgery, and then lied on purpose to me that the compressed nerves would calm down and pain go away and hands work if I am patient because it takes a couple of years. Actually, 2 years did nothing but cause my condition to become chronic, worse, and cause CS attacks that inflame my meninges until I get strokes, week after week. Oh, and waiting 2 years meant that they succeeded in their plan to get me past the statute of limitations and then act like I was a drug seeker the minute the 2 years past when I went in and innocently asked why it hadn't gotton better like they said it would. I would have had millions in lost wages, but worse, I lost everything.
In your case, it is more likely that your doctor is being harrassed by the government and his life is as miserable as yours (or, he's doing drugs). In any case, get yourself a new doctor. You don't need the additional hassle. You are so eloquent when you say that you try to keep the little self esteem you still have...kudos to you.

[suede]

Dave,
I just found out through this ordeal that my PM does not maintain scripts when a patient has undergone all treatments and PM is the only treatment left he the will write his recommendations and fax them to your PCP to write your scripts.
More and more PM Dr's are turning to this means of writing scripts, I would assume for many reasons.

Mark,
What your saying is exactly what really upsets me, is we are also human and my Dr and I had what I believed to be a good relationship up until recently and I truly believe that without my having ever broke any of the PM rules or abused any of my health issues and conformed to all means of test and treatment, he could have had the decency to have given me a notice to stopping my meds, he was and is aware of all my issues and health problems.
It is so sad and hurtful to know that others can so easily reject us and actually hold our quality of life and lives in their hands.

Sandi,
I truly hope you don't have any of these problems with your old Dr leaving.
Even though things have gone fairly well for me these past years with getting my scripts, I always knew that the possibility and likeability was there, it doesn't make it any easier though.

Christian,
I believe he did get in some type of trouble this past summer, it is hard to say and I'm sure I will probably never know.
However he is writing my scripts in accordance with my PM'S recommendations that should allow for something, you'd think.

GG,
I understand, y original problems started as BWC claim and I was screwed around with for so long and out off that I am now permanently disabled and still lost my WC claim.

Thanks to all of you, I am looking for a new PCP and hope to find one soon.
The house has been getting new windows ans siding and the noise here is so loud I haven't been able to do any calling yet.
I have an app. the 22 with my PCP and though I never stand up for myself, I can assure I will be straight forward this time and I expect answers and I'm taking y daughter along as a back up so I don't forget anything and so nothing can be said that can not be backed up...

[gizmogirl]

It's got to help on the 22nd that so many people will be with you in their hearts - I have marked my calendar to remind me.
Good luck!!

[suede]

Thanks (((GG))),
It will be a great comfort to know that, the support of people like you and others here at BT has been a great comfort and help to me over the years.
Linda

[brians2000]

Your story scared me, because all of us are dependent on our meds and our doctors to fill them. None of us would be on this meds if the doctor didnt write the first script and my doctor warned me up front that once you go on this meds it is usually for life. I agreed back then and now I have to have them in order to function day by day. I am always afraid that my doctor would decide he is ready to retire. He is getting to the age where he can retire and I have been seeing him for basically the past twenty five years or long before I became a CP patient. I just hate the thought of having to find another doctor. It would be so nice if our government would put us in a special system of CP patients and we are able to get our monthly meds when it is time for them. They could keep track of our criminal records and other records and they would be able to see when we get meds each month and allow us to get our meds without having to go thru anyone to get them. I realize I am dreaming but I hate having my life in someone else's hands especially another humans. Good luck and please keep us updated on your situation. Brian