Pain clinic wants to get rid of narcotics?

[Breezy1218]

My GYN (I have endometriosis also) referred me to a pain clinic, I had an appt last week. He started me on Neurontin and Zanaflex, and gave me my Percocet (I've been taking it chronically for pelvic pain for years, more so lately but my pain has been more constant lately, due to the new dx of IC). His goal is to get rid of the Percocet altogether, as I am the "prime age" for narcotic addiction.

While I understand his reasoning, I can say this much: the combo of the IC (I just had a distention a little over a week ago) and having the endo (I believe my period makes things flare up, due to all the inflammation happening down there!), NOTHING was helping my pain this weekend. The Percocet would at least take the edge off, taking the other two did nothing to help. Wouldn't stopping the Percocet be counter productive? I cannot live with pain like that, I can tell you that right now! I just read in another thread on here that Advil/NSAIDS cause flares in some people, and those meds have never helped my pain much, so I am wondering if that's why. I got my period two days after my appt there and called to ask if I could possibly take the Percocet every four hours rather than every six, during that time, and got a big fat NO. I am supposed to call them instead of my GYN when I have pain, and I am trying to do things by the book, but...then they don't help me! It's bad enough that I felt like a total criminal after my appt!

Are all pain clinics like this? What I thought would be helpful/good for me is turning out not to be, so far...

[Berkshire Road]

No, not all pain clinics are like that; some will prescribe narcotics (usually with a contract ensuring the patient does not abuse or sell them) where appropriate. Others seem to have a bias against them. The fact is that less than 2% of pain patients taking narcotics ever become addicted. I know that I, and a lot of us here, would be unable to get out of bed in the morning if I didn't have my pain meds.

But some clinics are like that; they want to encourage patients to find other ways of coping with pain. Which is fine, but there should be a balance between immediate need, and the goal of finding opiate-free solutions.

I know I've been in that position, although I am grateful that I now have a very understanding doctor to manage my pain meds. You think, "Now, why is it medically better for me to be curled up in pain and completely unable to function?"

There is no prime age for addiction. It happens to all ages, races, and socio-economic groups; it happens in cities and small towns and large suburbs; it happens to both sexes. But in our circumstances, it doesn't happen much at all.

I'm so sorry you are hurting. If you can find a different pain clinic, I would advise you to try again. Leaving you in pain is just wrong.

[Breezy1218]

That is good to know. I certainly would like to limit them as much as possible, but Percocet has been all that's worked for me over the years. I know I have built up a "tolerance," but that is not the same as "dependence," I know that much! I get my TENS unit later this week and hope that helps some, too. So far, all the neurontin and zanaflex seem to do is make me TIRED. I had to stop amitriptyline for that reason, as well. I know he is just going to titrate up the doses of those others, but will they even help? I don't have a lot of hope for it, since so far they do nothing.

[littlemyrn]

I had severe endo and had multiple surgeries to get rid of it, that was before I had official IC dx. Advil/Motrin or even Naproxn did nothing to cut the pain from my period. I ended up having complete hysto in 2005. But, I know one gyno I went to knew I couldn't tolerate advil, etc. because of stomach upset and prescibed Soma, that was the only pain med that did anything for the period pain. Good Luck.

[ihurttoo]

I am so sorry that they are doing this to you (and their other patients). Why on earth do Drs. give pts something that finally helps some and then try to take it away. Like you said, it isnt even taking away ALL of the pain now! I agree that it sounds like it's time to find a new pain clinic. I hate that they are doing this to you. My advice is to start looking now while they are still giving you the meds. It is alot easier to get another Dr. to give you meds when you are already on them, than it is to get one to give them to you when you arent taking any...(even if you JUST got off them.) Dont ask me why, but I have had this happen myself and have heard many others say the same thing.

It would also be a good idea to start getting everthing lined up now before you get to a new pain clinic. By that I mean to start keeping a pain diary, (if you arent already.) Your pain diary can double as your food diary (to help you find trigger beverages and foods.) You can also chart your pain after sex, cleaning, work, excersize, and other activities that set it off. Also, chart it after pain meds (and other meds) and after rest/sleep. You can also use this as a voiding diary. The pain/food/voiding diary will help you not only with your pain clinic, but it will also help you find your triggers, and it will help your Uro. Lastly, if you havent filed for SSD yet, and ever have to, it will help prove your case for Disability.

While you are getting things in order, print off all the info you can about IC, endo, (plus any other conditions you have) and pain meds. Take it with you to your new Dr. in case he/she doesnt know about IC. (If you havent given anything like this to your current pain Dr. it might be worth it to take it to them too, as a last ditch effort before you switch.) You never know, it just might persuade them.

If you havent tried a TENS unit yet, (or anything else that helps with pain that is non-narcotic related), it would be a good time to ask for one now, since they are trying to use other things.) Alot of ICers swear by them, and you never know, it might help. (That is, of course unless you already use one.)

As for the exhaustion and general drowsiness that often accompanies our meds, my pain clinic gave me a r/x of Provigil. It is like the reverse of a sleeping pill. You take it in the a.m., as soon as you wake up. It keeps you from being so sleepy. It is non-addictive. I hardly ever have to take it, (unless I am starting a new med), but it definately helps when you need it. IT also helps to take it after you have had a rough nite's sleep and only were able to sleep 4-5 hours. Ordinarily, if you could, you'd sleep in the daytime to catch up and then, you'd end up getting your days and nites mixed up. Well, when you take the Provigil, it keeps you awake, so that doesnt happen.

Again, I am so sorry that they are doing this to you. I hope that you can change their minds or that you find a new pain clinic where they are compassionate and have the primary goal of getting you out of pain, (instead of the primary goal of reducing the # of narcotic r/xes they write each month!)

Sending big hugs from Ky,
Amy

[Kara Isabel]

This recently happened to me! I really feel for you because I know how it feels to have the rug pulled out from underneath you and have meds taken away that are actually HELPING you! I really fought my pain clinic tooth and nail on this one and they ended up giving my meds back. Apparently, in my case, it was an "experiment" with several patients to pull them off pain meds and put us all on benzos but they got SEVERAL calls and complaints and decided that the "experiment" didn't work. Now, is this just an isolated thing with you? Or is it something the clinic is trying with several of their patients?

Amy gave you some great advice on how you can handle this, but I would just have a heart to heart with your doctor and tell them that you are IN PAIN, and if they want you off the percocet than ask if there is another alternative (one that will work).

I hope you get this resolved soon. It took me about 2-3 months to get my situation turned around. I hate that pain clinics do this to people.

Love,
Kara

[Breezy1218]

Thanks for all of your advice, ladies! I guess I was so surprised because I thought that's what pain clinics are FOR. Now, I didn't necessarily EXPECT narcotics, but docs in the past have talked to me about long-acting meds along with breakthrough meds, so I thought perhaps starting on something like Oxycontin as a long acting with percocet or oxycodone for breakthrough would be reasonable. I think I need to give it time to see how it plays out, since I JUST started there, and this is my first pain clinic. The problem of being a nurse is kind of knowing what they think of as "seeking," so it's hard to know WHAT to say, you know?

I get a TENS unit this Thursday, so hopefully that will help!

I will also definitely start keeping a diary. I don't know if it will help once they get to know me. He was going to cut my percocet dose in half, from 2 ES to one, and I asked for 10mg instead of 7.5 and he had a cow (but did give them to me after all). It makes me sad that I am so tolerant of it that sometimes that doesn't even seem to touch it! I wish there was a way to turn back the clock, and make those things work again.

I will keep you all updated!

[Sarojini]

Just wanted to let you know, yet again, that all pain clinics are not like yours -- I am really sorry you ran into one of the creepier ones.

My pain clinic is quite willing to let me take a long-acting narcotic (methadone) with a breakthrough med (Percocet). We worked together to find that combination; I had been on another long-acting medication, but found that it was not relieving my pain the way my doc and I wanted it to, so we played around with some things and settled on this.

While my pain clinic does have a few quirks (they are terrible at returning phone calls, they are sometimes sexist and respond better to my husband, and they can be a little like a fast-food drive-thru when getting people in and out of appointments some days) it is, overall, a good place to go for pain relief. They have several IC patients, so they know all about that... and they really stay on top of the latest research in pain management. They are also "full-service" in that they do medication management, injections, nerve blocks, physical therapy, the works. They also have a clinical psychologist on staff who deals with the emotional aspects of chronic pain, and they will send you to him if you wish.

The others are right... perhaps it is time to look into another pain clinic while you see what happens here. That way, if this one doesn't pan out you will have another option set to go.

As for what to say, I guess the rule of thumb is NEVER ask for a specific medication during the first three to five months (depending on how often your visits are). After that length of time, usually they learn to trust you a bit more, and you can have a more open dialogue with your doctor which includes mention of specific medications. Some doctors are very trusting right away, but many are not, even at the "good" clinics... so it's a good rule to use. Just use your judgement and your gut.

In that vein, yes, I do think the diary will help now, in the beginning, and later when they get to know you. I keep a pain diary routinely and I have been seeing my pain clinic for, oh, a year and a half now? I have a notebook in which I record pain levels throughout the day, and include information like what I'm doing physically, what I ate, what my mood is, what I'm doing to ease the pain if it is bad (taking meds, using heat, whatever).

I also keep a second diary -- my husband's brain His recollections and observations of me as an outsider are sometimes invaluable in dealing with pain doctors, especially when a medication change has been required.

As for Zanaflex, it knocks me out. I can only take that stuff at night because I absolutely can't function on it. Interesting that I can function on my narcotics, but not that!!

Neurontin.... never tried it, because my pain doctor refuses to prescribe it. She had several patient complaints. One patient who was taking it went to the store and then forgot how to get home!! Instead, she prescribes Lyrica (which I do take) -- it's another, brand-new med in the same class as Neurontin, but it doesn't seem to have the horrible "brain-fog" side effect. At least I have not noticed it. It's been a great addition to my pain care regimen, especially for my fibromyalgia -- but it does help IC pain too in my case.

Ok.... hope you're doing okay....