New Here And Need Suggestions...

[RSDB]

Hello Everyone. I was extremely upset, so I waited until I calmed down to start composing this message. Here goes! I was diagnosed with Fibro and CFS and living with it for over 30 years. I've gone through all of the recommended therapies, doctors, specialists, medications, etc. Approximately ten years ago I needed a PCP and waited six months for this new PCP to start in this established practice, as the doctor there was not taking new patients, but brought on this new doctor who will be seeing patients when she arrives in about six months. While waiting, I had been seeing a pain doctor (every month for three/four years) who prescribed oxycodone, which worked for me. I had no side effects, the medication made me feel "normal" and I was able to go about my day normally. However, going about a "normal" day always made me think I could do more, which I did, but paid for it the next day and sometimes the next FEW days. Even taking the oxycodone did not help, but knew from past experience that I just had to go with it and wait for everything to calm down.

After the months long wait, I saw my new PCP. She understood the Fibro/CFS symptoms I'd been living with. She told me that she would prescribe my pain medication and other medications, as I explained to her that I've been through every possible doctor/specialist and very tired of seeing doctors. If she would take over all my medications after all these years I would be extremely happy.

Three weeks ago, I called for an appt with my doctor and was told that I had to see another doctor. No reason given, but my doctor was no longer there and if I wanted to continue as I had been for ten years, I had to see this new doctor.

This new doctor told me that Fibro/CFS does not cause the pain I've had and I had to find a pain doctor. I had several discussions with my previous doctor re addiction, of which I was fearful. She explained the difference between being necessary and being addicted... this new dr obviously does not agree.

Needless to say, I was confused and shocked. She spent less then 20 minutes with me and before ending my appt, she retook my BP. My BP spiked 20 points. I felt like a criminal walking out of that office. It's been almost two weeks since that appt and that "criminal" feeling is still lingering.

She called in my oxycodone prescription... she gave me ONE week. That's another story, but will say that after calling my insurance, the doctor revised her prescription.

I was forced to find a pain doctor and have an appt next week. I pray that this pain dr does not make me go through everything I've already gone through for years, but I have a feeling that will be the case. I'm so tired of this. I found a doctor ten yrs ago and waited six months to see her who tried every new pain option, including medical marijuana, landed on what works for me (agreeing with previous pain doctor), which is the oxycodone. The prescription has not changed (increased) for years.

After doing some research to find my doctor, she now teaches and is not seeing patients. I don't understand anything which has gone on in that practice, but I will never return.

I now have to find a new PCP, too.

Thanks for listening. I feel like I'm out and on my own. Has anyone else had a similar experience? Does anyone have some advice for me?

 

[sunkacola]

@RSDB ...........I have had similar experience. And I would be willing to bet that others here on this forum, and elsewhere, have also had similar experience. You are not alone.

The truth is, you have been incredibly fortunate to have had a doctor for so long who truly understood your situation and was willing to continue to prescribe for you the one thing that works for you, despite it being an opiate. Many people in your situation who were taking opiates for chronic pain found themselves suddenly cut off completely between one day and the next when all the hype about opiate addiction started up a few years ago. Despite the fact that the opiate addiction problem was not started by people who were taking a measured and prescribed dosage for severe chronic pain, those are the people who have suffered the most from the crack-down on prescribing opiates.

Your good doctor simply decided to change their career.....as of course they had the right to do. It's very un fortunate and, in my way of thinking kind of unfair or even irresponsible of that doctor not to have thought of you and maybe other patients in your position and taken steps to ensure that care would be continued with another doctor. But this is not a new story....I have unfortunately heard of such things before, and something similar has also happened to me.

At this point in the US most doctors, unless they are qualified Pain Specialists working within a pain clinic setting, won't prescribe opiates at all for anyone, no matter what. They are too afraid of what might happen to them, their practice, and their careers if one of their patients became addicted or claimed to be and sued them. So most likely your only option is to go through a pain clinic and jump through their various hoops and hope for the best. They usually require a lot of answers to questions, filling out of forms, urine testing to find out exactly what you have had in your system for the past month, and so on. And then, of course, you are as always at the mercy of who you get and how they look at things, what mood they are in and whether or not they feel like believing you or helping you. Sometimes they treat you badly and you just have to take it if you want to get the medication that makes it possible for you to have a life. I have had to deal with someone who I would swear only worked at that clinic so that she could be rude and patronizing and dismissive and say horrible things to the patients with impunity because those people had nowhere else to go.

So yes, I understand, as do others here, and I am here to support you any way that I can. I hope very much that you get someone understanding and get the help you need. I know for a fact that opiates can be taken responsibly and that there's a huge difference between necessity and addiction. I am in a similar situation to you, having to go once again to a pain center for medication and I only hope I get a good doctor this time.

As for advice? Only what I tend to suggest to people seeing a new doctor:
Don't say that something they suggest won't work. Say you tried it, say when, and say how it went for you.
Don't ask specifically for an opiate medication or they may think you are a "drug seeker". Instead, tell them -if they ask -everything that you have tried, including the opiate, and tell them how those various things affected you.
Make sure you do not get emotional, no matter what happens. It will not help, and may greatly harm your chances of getting out of there without being referred to a shrink.
If they ask, try to give an accurate, succinct, brief description of your life, the level of pain you have, and how your life is affected by the pain. If you think there's any chance you might veer off onto a tangent, lose a train of thought, or repeat yourself, write it down in advance and read it to them. This will keep you from annoying them by going on too long, and also will make sure you don't forget something important.
No matter how they treat you, you have to remain calm and polite and respectful.
Don't argue with them. You will never win and it will only create an antagonistic relationship meaning they won't want to help you.

Sorry. I know that all sounds as if you don't deserve respect or to have your say, and you do deserve all of that. Those are only the things I have learned, and your experience could be different, so it's not cut in stone, and you should only take what you wish from it.
Best of luck to you, and please let us know how it goes.

 

[RSDB]

Thank you so much for the response.
As I said, the replacement doctor who told me I must see a pain doctor made me feel like a criminal. I made an appt with a pain dr who was the first available and saw her yesterday, Dec 23. She sat down and said, "I know you're not going to like what I have to say..." and continued to tell me that I'm taking too much of the oxycodone and she will not prescribe. I just sat there and listened. I had no idea what she was going to say and was puzzled re her first sentence. She then talked about suboxone and to make a long story short, handed me an exit paper with the name of a rehab person on it.
I have nothing against stopping the oxycodone, but in two days I will have nothing to taper off from! From what I've read, stopping abruptly will not be fun and it scares me.
I don't know what to do.
I don't know how to go about finding doctors, as my previous doctor of nine/ten years prescribed everything for me, including Synthroid for my Hashimoto's disease!!
After thinking about this situation, I am just getting more and more pissed off.
I don't know what the dr who took over from my long-time doctor wrote about me, but it seems to me that she didn't write anything positive.
After thinking about this entire situation, why am I being made to feel like the criminal???? I did not write prescriptions. I did everything required of me. Signed contracts, used ONE pharmacy, never saw another doctor, gave urine samples, etc. But, I'm being looked at like a criminal drug addict!!!
I just don't get it. And would love to find a doctor who would help and not judge.
If there's anyone in the Pittsburgh area who can recommend a doctor or has any information/suggestions please let me know. I feel totally abandoned at this point.

 

[sunkacola]

@RSDB .....I am so sorry!
Many of us here understand what you are going through, your frustration, anger, and emotional pain at being treated in such an off-hand manner.

I know this is incredibly hard, seems impossible...but if you can possibly keep yourself from getting too worked up about this, it will help you. Great emotional stress makes our pain far worse, for most of us, so if you can do deep breathing or a guided meditation or even have a glass of wine....whatever might help you to be calm....that will be to your benefit.

I sounds to me as if you really don't have much choice here except to call the rehab person. You are going to need some help, because cutting off suddenly from the oxy is potentially dangerous. I think that the doctor, in not letting you taper off gradually, was very wrong. But of course, I don't know because I am not medically trained. The very worst of it is the time of year, when many places will be closed! I recommend you call the rehab person today and tell them, or leave a message, explaining the dosage you have been on and how many doses you have left, and asking for immediate help.

I don't think someone necessarily wrote bad things about you. The doctor you saw may have their own attitudes and opinions about this and simply think that cutting you off from the oxy is the thing to do. They may not even have read anything from your previous doctor(s). This is what I mean when I say it all depends on who you see and what kind of day that person is having. It's incredibly capricious, and it puts us at risk, and that is just how it is.

They probably don't think you are a criminal....they just have an attitude and probably treat everyone like that. This is the current state of health care in general, and most especially pain management, in our country, and in my opinion it is very, very bad. We are totally at their mercy.
(Unless, of course, a person is very rich, in which case they can get anything they want at any time.)

Please take care of yourself. If you start to have bad withdrawal symptoms and cannot see the rehab person right away, go to Urgent Care, tell them the whole story, and see if you can get in to see someone who can help you. You likely will not get oxycodone any more, but you should have access to help getting weaned safely off it.

 

[RSDB]

Thank you so much. You are right in everything you described. I'm still in the disbelief mode. Wondering how I was made the "bad person" in this! And now I have to think about rehab, something I've never in a million years I would have to do. I appreciate every word you took the time to write and will take your advice. But, my head is still spinning from all of this.

Merry Christmas!

 

[sunkacola]

Just one more word.....which I hope in some small way can help you.

You have not been made the "bad person", because even if that doctor thinks that (and we don't know if they do or not), nobody can make you the bad person if that is not what you are.

Someone very wise once said to me: You know what you know.
To me, this means that no matter what anyone else says about you, or about what you did or thought or any other thing, you know the truth about yourself, your experience, and what has happened in your life. You know.
If you know that you have done nothing wrong, it matters not what anyone else says or thinks...you know the truth.

Every day, people are not believed when they tell the truth. Some are sentenced to prison for things they've not done. All you can do is hold on to yourself, and know that you know what is true in your life and experience. You have absolutely nothing to feel bad about.

I hope very much that you can get whatever help is the best for you to get through this time of your life that is so difficult.
Please keep us updated on how you are.