Feeling Desperado Here....In need of some quick insight/opinions.....

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SailorCaroline
New Member


Date Joined Apr 2011
Total Posts : 2
   Posted 4/11/2011 8:45 AM (GMT -6)   
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 ;)

MsBunky
Veteran Member


Date Joined Jan 2010
Total Posts : 1097
   Posted 4/11/2011 9:01 AM (GMT -6)   
It sounds to me like the tensions in the office are causing some irrational actions in the staff. By all means, call the office and have them review the treatment plan - it's ludicrous to expect someone to get relief on a lower dose of medication.

I'm sorry you're having a rough time, but I think you really do need to assert yourself (calmly and rationally mind you!) to explain what you need and why. Good luck...I hope the Office Manager can help you.

hugs,
Pam
DX: Fibromyalgia, Severe Myofascial Pain, Osteoarthritis in Hips and Lower Back, Chronic Pelvic Pain, Surgical Adhesions, IBS, IC-PBS, Carpal Tunnel (both wrists), FAI, Type 2 Diabetes, Reynauds, Visual Migraines, Drug Related Hot Flashes, Hard Start for IV's, Unable to vomit due to surgery.

Meds: Oxycontin, Tramadol, Tramacet, Cymbalta, Cesamet, Flexeril

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 4/11/2011 12:37 PM (GMT -6)   
SailorCaroline,

I'm sorry for all of this "unnecessary" stress!! I have lots to say (as usual) but I just hit a wall of exhaustion....but I will write more in a little bit.

Until then - try not to stress. If you do call in to your doctor's - let us know what happens. But I'll write more in a bit.... Take good care - Tina
Many, many health and pain issues.
Many meds - including Atenolol, Effexor, MS Contin, Dilaudid, Actiq (oral Fentanyl), Soma, Vitamin D, Iron (for anemia), Synthroid...and on the list goes.
Personal: I'm a Christian wife and mother; I have six sons and identical twin daughters.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16787
   Posted 4/11/2011 1:37 PM (GMT -6)   
Hello Sailor and welcome to Healing Well's chronic pain forum. Wow, what a mess, and it does sound like the stress in that place was off the scale. I cannot imagine them double booking a NP or even a dr like that. That is how huge mistakes happen. I am quite sure the NP was probably beside herself and had good reason to be so. Had they say called the afternoon patients and rescheduled them for another day things may have gone better for you. I do hope by now that you have called and spoken with the office mgr about your concerns over the medication changes.

I do not know of anyone that has been successful in getting off of Methadone. Some of our members here take it and one in particular has tried two different times to to switch to another pain medication with absolutely no luck at all. You know it is just like you say, for some it can be a wonderful source of pain control, however, it is next to impossible to get off of once you start it. Methadone should be a last resort type of pain medication. There are far too many other pain medications on the market to get caught up in that trap. I am so sorry that you have been one of them. Another problem is switching from Methadone to another pain medication, most drs do not know how to convert from Methadone something else, leaving the patient under medicated. It is a viscous circle from what I have seen and heard.

Personally speaking, I would be on the hunt for a new PM dr and yes, I would be willing to travel some distance. One of my biggest fears if I were in your shoes is showing up for an appt one day only to find a padlock on the door. I would get on the internet and start searching there and see what I could come up with. The situation you are in is far from what I would consider stable. I have seen this type of set up with an orthopedic one time and it did not last long, It ended up he could not find anyone wanting to be associated with his name. Drs have an incredible grapevine, lol.

I would like to point out that if you will look in CP101 there is information in there about ways of getting medication at a reduced rate. So many of the company's now offer prescription assistance programs so please check this out it could possibly save you a lot money.

I do hope you have got this situation resolved and I am betting the office mgr has probably been swamped with many calls much like yours. Anyway, I wanted to pop on and tell you welcome aboard.
Moderator Chronic Pain Forum

Hound-Dog
Regular Member


Date Joined Oct 2005
Total Posts : 183
   Posted 4/12/2011 1:16 AM (GMT -6)   
I turned on the t.v. today,watched it for 1/2 an hour and felt like throwing a hammer through the screen.What was on was a poorly done documentary (?) that screamed "Pill-Mills" in your community.The whole show implied that anyone on narcotics is a fraud at best and a criminal at worst.Nowhere was legitimate prescriptions for pain patients even talked about.about the only thing one can do is to write to their politicians and push for them to design a proper system so that "certified pain patients", of which 99.9% of the members of this board would qualify for, should NEVER have to worry about getting our NEEDED pain medications.It shouldn't be any harder to get our pain medications as it is to get our heart or insulin prescriptions.Sorry,just my rant for today..............Rod

flower123
Veteran Member


Date Joined Apr 2009
Total Posts : 856
   Posted 4/12/2011 5:14 AM (GMT -6)   
Caroline,

Wow. Yes. I would call back to discuss your treatment plan. The office really sounds like everything is a mess there. I would also look for another doctor!

Will write more later when I have more time.
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