I am so sad, disappointed, pissed. I have spent over 4 miserable years with uncontrolled ATN. After trying every single anti-seizure alone and in combination, 2 years of painful monthly nerve injections, 2 radiofrequency ablasions, a nuerostimulator, prescription compounding cream, my pain doctor finally allowed me 2 7.5 vicodin a day this past fall and then when winter hit and I was totally miserable, he upped it to 3 a day for two months. Now I am back to 2 a day and am going to try another nerve injection next week because he is going to take me off the Vicodin completely. I have NEVER abused the Vicodin. In fact, I never was out at the time of my refill. I only took one when I felt the pain was beginning to hit an uncontrollable level. I think it's because he left his old practice and became head of the pain clinic of another hospital. In conversation with one of the office girls, she let it out that the clinic had gotten in trouble and almost shut down and my doctor was hired to clean things up.
I'm afraid if I switch doctors, it will look like I am drug seeking if I leave because he's cutting off my pain med. Plus, I read in my chart one time there is a quote that said "she stated that she LOVES the Vicodin". I was sooooo pissed when I read that. I remember when I said it -- it was after the first month of taking the 2 Vicodin with Lamictal and he asked me how it was working. I said I loved it because it was the first time in 4 years my pain was controlled to the point I could function like a "normal" person! I am a Southern woman (who lives up North). Southern women LOVE everything. I say I LOVE chocolate, I LOVE your oufit, I LOVE to walk, you get it. I even have turned to the nurse and said "I LOVE this man!" with him there so many times I can't count them -- do you think THAT statement is recorded in my file? All this over a damn 7.5 Vicodin 2 x a day. Of COURSE I am freaking out at the thought of NO pain relief day in and day out again!
Sounds to me like it's time to bring an advocate with you in your next appointment with the doctor. The key question that he needs to answer in front of a witness is this: "what is the medically accepted standard of practice for control of otherwise intractable chronic neuropathic pain -- and what recognized roles do opioid medications play in that standard? Quote your literature sources!"
Right now (in my opinion) all of medicine is suffering from the arbitrary persecution that the US Drug Enforcement Authority (DEA) is directing toward pain management doctors. Thousands have outright been driven out of practice. There genuinely is an issue of drug addicts seeking their drugs of choice from medical practitioners. But that issue is manageable without subjecting a doctor to accusations of facilitating addiction.
Even some pain management experts are also unwilling to make the appropriate distinction between "addiction" and "dependency". The latter does not entail either a drug "high" or a spiral of ever-increasing doses of opioids, even when a patient is dependent on medication to be able to function at all. But DEA foolishly refuses to embrace that reality and goes after doctors who do.
Sometimes I idly wonder why more DEA administrators haven't been sued for medical malpractice. That or stood up against a wall and shot.
Hi Mary,
I would definitely bring someone with you to your next appt. Did your doctor have a plan to change your meds to something else because allowing someone to suffer to set a precedent is so low. Asking the questions that Red mentioned should get his attention. I live in Canada and am fortunate to have a great pain doctor but it did take some asking the right people to get the help I needed. Keep us posted on your progress with your doctor and I will be saying a few prayers for you. Stay strong.
Hugs,
Tracy
hmmm does he have any alternatives for you ? I mean any reasonable Dr. is going to realise the gaping hole in your management program this is going to leave.
I'm seeing him on Wednesday to have a steroid nerve injection. I had been having one every 4-6 weeks and then they stopped working. That's when I tried the neurostimulator, so it's been about a 7 month break from the steroids. We'll see.... the steroid certainly did not ever give me anywhere close to the relief that I get from the Vicodin.
Red, you are awesome when you are fired up! (Well, you are awesome anyway.)
Richard A. "Red" Lawhern said:
Sounds to me like it's time to bring an advocate with you in your next appointment with the doctor. The key question that he needs to answer in front of a witness is this: "what is the medically accepted standard of practice for control of otherwise intractable chronic neuropathic pain -- and what recognized roles do opioid medications play in that standard? Quote your literature sources!"
Right now (in my opinion) all of medicine is suffering from the arbitrary persecution that the US Drug Enforcement Authority (DEA) is directing toward pain management doctors. Thousands have outright been driven out of practice. There genuinely is an issue of drug addicts seeking their drugs of choice from medical practitioners. But that issue is manageable without subjecting a doctor to accusations of facilitating addiction.
Even some pain management experts are also unwilling to make the appropriate distinction between "addiction" and "dependency". The latter does not entail either a drug "high" or a spiral of ever-increasing doses of opioids, even when a patient is dependent on medication to be able to function at all. But DEA foolishly refuses to embrace that reality and goes after doctors who do.
Sometimes I idly wonder why more DEA administrators haven't been sued for medical malpractice. That or stood up against a wall and shot.
Mary... you've probably heard the old saw about academic qualifications? BS, MS, PhD can be liberally translated, with the last term signifying "piled higher and deeper". I fear that I am too much a plain speaker to be politically correct when people are being put into agony as some sort of "collateral damage" of the "war on drugs".21 years as a military officer only added to an instinct for kicking tail and taking names where this kind of nonsense is concerned.
As an English playwright wrote in "The Importance of Being Earnest", "life is too important to be taken seriously." So thanks for the awesome adjective... I think... {:-) But pardon me please if I don't take it too deeply to heart. We're all on this journey together and it's about you, not about me.
This has happened to me, too. If you can't find someone to come with you to your appointment, ask a friend to help you plan (in writing) what you want to say.
What really angers me about this is that in order to get the opioids that make my pain manageable, I agree to other treatments that are (in my experience and according to the literature) less effective and actually harmful. I have zero trust in the healthcare system.
I remind myself that I can survive the constant pain for a period of time if I am cut off. Insist on a follow-up appointment to check in. And when things get bad, start calling the doctor's office to ask for their help.
I can really only tolerate the pain without opioids for 3-4 weeks. At that point I am physically and mentally exhausted, my blood pressure is up, I am missing work, and I am referred back to some specialist and the whole cycle starts again. I also try to remain hopeful that some other treatment will work or that there will be less pain some days.
I am only on 7.5 Norco (Vicodin with less acetaminophen) twice daily as well. I went to the ER about 6 months ago for an exacerbation and as soon as they found out I was a patient at a pain clinic they treated me like a drug seeking addict. It was the most horrible and degrading experience of my life. I am now in the system as an addict seeking drugs in the largest health system in my area. I have to drive all the way down to Pittsburgh to get treatment for emergency exacerbation's.
I feel for you because I know how you feel and what you are going through. Red is right you need an advocate to go with you. I was blessed that my Pain Clinic doc and my PCP fought together on my behalf to get the red flag removed but when I go to that ER and if I get a certain doc there I get the same horrible treatment!
How did the neurostimulator work for you? I just had my appt and the doc suggested that because the injections aren't working anymore. I am researching the stimulator now. Thanks!
Mary L said:
I'm seeing him on Wednesday to have a steroid nerve injection. I had been having one every 4-6 weeks and then they stopped working. That's when I tried the neurostimulator, so it's been about a 7 month break from the steroids. We'll see.... the steroid certainly did not ever give me anywhere close to the relief that I get from the Vicodin.
My shrink is doing the same thing. A few months ago I was diagnosed with fibro and my family doctor hummed and hawed about because the specialist recommended I go off dilaudid he decided since it really helps me that I can stay on it. But my shrink read that report and took me off dilaudid. So far I’m weaning off but was absolutely PISSED and terrified. And I’ll be so mad if they take me off it to find nothing else helps and put me back on. Lol but we have each other for support and we can make it through this. Janet
How frustrating!!! Anytime I have gone to the ER I am so worried that they are going to think the same thing about me. I wished everyone, especially those in the health profession, would just get a clue. I am mad for you LaLa!!! I am glad your doc fought for you!
La La said:
I am only on 7.5 Norco (Vicodin with less acetaminophen) twice daily as well. I went to the ER about 6 months ago for an exacerbation and as soon as they found out I was a patient at a pain clinic they treated me like a drug seeking addict. It was the most horrible and degrading experience of my life. I am now in the system as an addict seeking drugs in the largest health system in my area. I have to drive all the way down to Pittsburgh to get treatment for emergency exacerbation's.
I feel for you because I know how you feel and what you are going through. Red is right you need an advocate to go with you. I was blessed that my Pain Clinic doc and my PCP fought together on my behalf to get the red flag removed but when I go to that ER and if I get a certain doc there I get the same horrible treatment!