advice on dr/patient communication

Hi Everyone!
This is my first time posting here on the forums, as I just found this site a few days ago while doing internet search after search in hopes of finding some insight/opinions/advice about my predicament. I was impressed by the knowledge and real sense of community amongst your members.

Anywho..here's my situation. Its more or less a question on how to handle different confrontations that may araise in a pain mgnt office, or in particular between dr. and patient--- especially now days, with the recent "war on pain" and what not that has doc's everywhere apprehensive about writing scripts for pain meds.

I'll start with a brief background and then explain what happened this month. ANY opinions, thoughts, advice, anything(!!) is GREATLY appreciated....

So, First of all it's worth mentioning that here in my city, there is only 2 pain mgnt. doc's left. The office I go to is owned by Dr. R who used to specialize in psychology/pain mgnt, but recently Dr. R went under investigation and "lost" his privileges to write narcotic rx's for a few years....so he has retreated to just practicing psychology himself, but hires other dr's to work with his existing clientele of pain mgt patients.
The turnover rate with these new "fill in" doc's is extremely high. I'm assuming of course, one reason is because of the obvious risk that dr's are taking to specialize in pain treatment, but I also theorize that the stress must be tremendous seeing as there are only 2 practices in all of tucson that will see pain patients now. The workload is presumably overwhelming, and you can feel the tension everytime you enter the office.

So I have been going to this same dr's office now for almost two years. Before I started at this office, I was perscribed methadone, and was eager to transition to another narcotic like oxycodone. I hated the methadone side effects, and I was only on it because my last dr had told me it was the safest pain med for pregnancy, and I had just given birth to my daughter, so I was eager to move on. My transitioning plan to did not go without hitch as planned, and I ended up unable to go cold turkey from the methadone, even when substituting with oxycontin. I was still feeling withdrawals and major depression, which my dr called "Psychological m.done w/d's" that are apparently "common" after stoppping methadone(?) So after my first 2 months on only oxycontin /and oxycodone, we switched to a regamine of 30mgs/methadone/day along with 90mgs/oxycodone/day for breakthrough pain.

I have been wanting to wean down on my m.done and switch to oxycodone or on any alternative for that matter....but until a few months ago I hadn't brought it up because I was constantly seeing a new dr each month. I did, however write down my "concerns" each month on a paper that we fill out for our charts. So basicly, even though I hadn't mentioned it, there is months of records in my charts of my desperation to find a balance between pain control and medicine tolerability.

My main concern with the methadone was the debilitating fatigue that it caused me. And as someone who is already a diagnosed narcoleptic, this is the last thing I need.
So, fastforward to a couple months ago....while reading forums , I had stumbled upon a new drug called Nucynta. I didn't know anything about it, except for the fact that it was getting rave reviews from patients, many claiming a new found sense of energy. At my next appointment I asked about it, and was surprised to hear that my doctor responded with "Really? You *want* to try that? I can't even give those away!" and proceeded to explain to me that it is a new type of drug that is supposed to provide the pain relief of a narcotic, without the "high". And that scared most people away. Anywho, I ended up trying it, and it worked decently for pain, but the price was astronomical. (I am uninsured)

So next month.....I inquire about Fetanyl patches. I explain that the thing that I do love about my methadone is it's longevity and wonderful pain controlling abilites, but that the side effects were just too much to handle. I thought fetanyl might be a logical alternative since the patch is worn for a few days, so longevity would be comparable to that of methadone, and as for pain control, from what I had read online fetanyl had a great reputation.
The Nurse Practioner who I was seeing that month discussed the pros and cons with me, and I left with a script for 10 100mcg/hr fetanyl patches (to be changed every 3 days), along with 15mgs of methadone/day (1/2 of my usual dose, so that It would be more of a "weaning" off than abruptly stoping, like I had tried and failed in the past. Just an FYI...the rumors are true....methadone is absolute HELL to get off of, even with the option of other narcs!) and 90 10mg/oxycodone for breakthrough pain.

I left feeling optimistic, but got myfirst disapointment with fetanyl the second I got the the pharmacy and was told that a months supply would b e costing just under $1000. Something I can totally not afford, Luckily My dad helped out this month, but with the cost alone I knew I could not take this again next month. As it turned out, the fetanyl was a total bust in more ways then one, and I even (surprisingly) felt w/d from my higher methadone dose. The fetanyl just did not work out.

So this moth, I go in to see the Nurse Practitioner (same as last month), and after waiting 5 long hours (apparently another dr called in that day so she was taking double the patients) ...and I don't know if it was her stress or what but she was being totally unreasonable. I explained how expensive the fetanyl patches were, and that I'd like to just go back to the methadone/oxycodone that I had been on previousl, *however* I explained how I had felt mild w/d's from the methadone throughout the past month, so since I had gone that far, I wanted to stay on a lower dose of methadone and just substitute with oxycontin.

Now, in months past, It has always been understood that I was working on an unltimate goal of finding a balance between getting the pain control that methadone offered me without the side effects, and that the "Docs and I would work together" to find a happy medium.

But, no. The NP was totally in her own little world or something. When I explained about the fetnyl patches not working out, she just took them off and refused to substituete anything.Then she procedeed to cut my methadone dose down to 20mgs/day and myoxycodone down to 20/mgs a day.

I was dumbfounded, and was telling her that not only was this absured for my pain plan, but that I was psychilally dependant on opiates, and going from my scripts last month, to the drasticly reduced scripts this month would not only hurt me pain wise, but would certainly cause withdrawal, too.

She literally was like "I know you can do it this will be fine". I was dumbfounded. Not only was she apparently not all there, she obviously was oblivious to my chart, to me, or to her job of helping patients find relief. (Another thing, she was so spacy this day that the scripts she did write me, she ended up having to re write 3 times! She just kept making mistakes?)

So myquestion is this. I plan on calling and speaking with the office manager today and explaining my situation to see what I can do. If I can maybe see another doctor, or if maybe she can review my chart to see how irrational the rx shift was? Ugh...it's hard to articulate exactly what I should say. Basicly, I need imput. Does this sound crazy to you? Have you been in this position before? What should I do?

Also, just as a note, I have always drug tested perfectly, never had any problems, and the Nucynta and the fetanyl are the only 2 times I had asked about trying something new. What is your take on the whole situation? I appreciate any responses ;)

Hi,

I am so sorry you are going through this.

Before I was diagnosed I was going to a pain management physician who was horrible, and I saw my fair share of bad ones before that. Mine wanted to do injections (at 2k a pop) that were contradictory to my diagnosis. And when I didn't want to do them because of the risk of paralysis he told me no more meds for me and cut me off cold turkey. I was suicidal when I got in my car. My new doctor is stunned at my medication list. he would give me 20 Norco and have me come back every week! Or call in 2 Ambien. My pharmacy called me a few times asking if this was a mistake.

Now I have been on Nucynta, and it is very much like Ultram, so if that works for you then it may be a good choice. It did nothing for me, there is a huge debate as to why this is a Class 2 medication.

Personally I researched pain clinics- not pain management physicians, but clinics. I looked around on chronic pain and paralysis forums and found a clinic right in my backyard that was rated one of the best places to go to in the USA. It has worked really well for me. I go in, have my pain checked, I wait 3 months and repeat. They even send my medications to my house/work so I don't have to worry about a script.

It may be worth to find something like that, is there a major hospital near by? They usually have more comprehensive pain programs.
I don't know what you can say to the office manager, ad unfortunately we live in a society that does not understand that chronic pain is different that addiction. You need to be calm and tell them you don't have insurance, and it was your mistake not to check on the patches.

I am a bit worried that they put you on the methadone right away. From my understanding it's only a good idea IF your physician regularly prescribes it. It's not exactly a first line drug that's for sure.

I would wait and look into other options before you ruffle any feathers- as sad as it is.

I have been exactly where you have been. The story is almost alike. I go to a pain clinic that I use to get high doses of narcotics from. I became dependent or addicted to them ( what ever you want to call it) The narcotics caused me so much problems especially depression. I hated that I had to take them or I would feel the withdrawls. I finalaly got tired of them controlling my life and I went through a program that taught me how to work through my pain. It really did help. The narcotics were causing me more pain after several years on them. I have tried them all. My doctors at the pain clinic began to get scard about writing me anymore scirpts on narcotics because of the deep depression. They said their licence was at stake. I even tried to changed Dr's in the clinic and they said I couln't they all work together on this. I am glad it turned out this way because they probably have saved my life and given a beter quality life. I am now on a medication called subutex. It helps my pain, less addictive, very litle side effects. It started out to be a drug to get off of narcotics, but they found out that it works well with people that have chronic pain. I take one a day. It life span is 24-72 hrs. I too dont have insurance and I get so frustrated when I have to pay my dr. each month. I found the medication a lot cheaper at costco. At other stores it's very expensive. one month supply is $117. I thought about going back on methodone, but I remember how nasty that drug was. When I took the regular narcotics I would get in pain after 3- 4 hrs and now I dont have that problem anymore. I think because the pill honestly last 24- 72 hrs. I love it. I would probably go back to my main dr and talk with them if you dont get help at the pain clinic. I would talk with my main dr. and ask for another consult to a new pain clinic. I know what you are thinking more money with no insurance. If you dont get anywhere, you might want to try it. The medication I am on is no more expensive then a big bottle of narctocis when you are paying cash. I know alot of people out there can tolerate narcotics and handle them with care and you might be one of them. I myself have to be very cautious when using narcotics or sleeping medications. My dr. has red flag me on his computer to not give me narcotics due to my deep depression problems. He can see how much I have changed with my new medication and that class..