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.