My nephrologist manages my pain but does so in quiet consultation with the pain management clinic in the hospital (alas a clinic that is so overwhelmed they only have staff and time to see active duty service members only).

He does send some of his PKD patients with kidney-only pain (I'm unique with the liver pain) to a local pain management specialist who works with interventional techniques (very specific nerve blocks) that have been quite successful for a couple of patients and utter failures for others (pain management requires multiple modalities and a reasonable expectation on the part of both the patient and the provider that not everything will work for everyone).

Before going to any pain clinic, I would definitely research what modalities they use and ensure they absolutely offer opiod medications as a treatment option. Call yourself and ask and see how they treat you on the phone; that will give you a good idea of how they think about medication versus other treatment options (a large number will hang up on you or say we don't treat drug seekers, without knowing anything about you). Others will say they treat patients with opiods, then have you sign a contract only to find out they use one medication only (e.g. suboxone, which is used for opiod withdrawal, not necessarily visceral/somatic pain, and/or put ludicrous limitations on the amount of medication you can have per month (e.g. 10 Percocet, period)...and don't you dare ask for more or you will be labeled in your medical records and on a billing statement that goes to your insurance company and the big medical database (can't remember the name) as a drug seeker!

There are a plethora of pain clinics springing up across the country, many being set up by chiropractors or physicians with absolutely no training in pain management whatsoever (the only board certifications in pain management are for anestheisologists and pysiatrists, but anyone can hang out a shingle and claim to be a pain management "expert"), but in this era of fear-mongering about addiction (which happens to so very few true pain patients), most of these clinics focus solely on limited physical therapy (usually conducted by rote, self-directed) and injections with everything from saline to steroids (rarely actual pain medication), therapies which are not generally going to be efffective for the pain of PKD, which is not neuropathic, it is visceral, somatic pain (this is real; you can SEE it). Most also require a pain contract up front which prohibits you from getting any pain medication for any reason (most including in an emergency) from any doctor other than Dr. Pain Clinic...and it will turn out that he/she won't prescribe any either.

Bottom line, unless there is something very specific the pain clinic can offer or fine tune as a second opinion that your nephrologist can't, I would stick with your nephrologist and have him manage your pain. A second opinion with a true pain management specialist (anesthesiologist is best) would be a great idea; part of my dual liver/kidney transplant eval included just that very thing. It was done to ensure my pain management program at the time was maximized using the minimum amount of medications, that there would be no problems during surgery or with post-operative pain management and the reminder that they couldn't abruptly stop all pain medication when my post operative pain had resolved...I still will need to taper off my regular dose of pain medication as I've been on them for years, not days in a post-op environment and thus need to taper down slowly to avoid complications (in other words, my steady state dose is my baseline for every day, not a post-operative pain management medication, although it may end up working that way...it will just take longer to reduce the dose than for most paitents). Of course the pain doc told me he really didn't want me on a higher baseline dose of medications; my reply was for him to convince them to transplant me sooner rather than later and then pain wouldn't be as much of an issue...3 years later my baseline medication dose is higher, just a different medication (my liver has grown substantially since then!).

I hope my ramblings have helped. If you want to hear some good, some bad stories about pain clinics in general, wander over to the pain management board and do some reading. It's enlightening; scary, but enlightening.

Hope the Fentanyl is still working and you're feeling more "awake"!
Ruth

Thank you Ruth. I will check the pain mgmt board out. That is scary indeed.

I am off my Fentanyl (25 mcg/hr) right now and back on Hydrocodone. After two weeks, the Fentanyl suddenly became quite sedative. I have some very large important projects going on at work I have to get through. Maybe towards the end of the month I can try Fentanyl again. That was so nice to be pain free.

There is a 12 mcg/h patch that you may want to consider; that's just shy of half the dose you were on. Hopefully the sedative effect would be signficantly less than the 25 mcg/h dose you were on. It's definitely worth considering since you had such a positive reaction in terms of pain relief with the medication.

Good luck with the projects!
Ruth

I tried it for 3 days before stopping it altogether. It wasnt a fair trial. I just didn't have the time to see if it would work. I look forward to try it again.

I get the NKF newsletters and this caught my eye when I thought about your problem.
Coffee House Conversations Developed in 2008, this program provides education and support through free telephone calls. The NKF coordinates these educational sessions that are presented by a patient and professional panel of experts on topics of importance to those coping with issues associated with dialysis, CKD, transplantation and organ and tissue donation. To hear past telephone calls, and to learn about upcoming calls, please go to www.kidney.org/coffeehouse. NKFs Patient Services Director and the PFC are currently planning calls for 2010-2011. If you have an idea for a topic or want to find out more information please email coffeehouse@kidney.org.
If you pose your question on pain management to this "panel of experts", I'd be curious as to what they say.
What does your nephrologist suggest? My husband is an engineer and I can't imagine him having to work on his projects in unbearable pain such as you describe. Let us know what is working now for you. Hydrocodone helps somewhat? You would think a nephrologist could suggest a pain med without the sedation side effects. Have you talked with a pharmacist about this? Sometimes they are most helpful.
My husband and I wish you the best.