Pain management program - What is normal?
June 26, 2013 10:33 AM   Subscribe

Are my expectations of my pain management program unrealistic? I feel like my pain doctor is more than happy to leave me in pain for extended periods of time, and I just don't know what is normal in a pain management program.

[Note: Posted on behalf of my wife who is looking for an urgent answer before her next askme is available]

I am part of a pain management program to help manage fibromyalgia pain. This is all fairly new to me, I've only been part of the program since September. But the one thing I'm experiencing and I'm NOT liking is the pain specialist (MD) I'm seeing seems more than happy to let me be in pain and without sufficient treatment. Early on, I figured it was because the medications I was trying needed time to work. But lately, after those drugs haven't worked, I'm feeling less confident that is why I have these gaps where she's not doing anything. At a some what recent appointment, I was explaining that I still was getting inadequate pain relief, especially at night, making it difficult to sleep. It didn't help that the pain med I was on gave me insomnia (Tylenol 3) so I often had to choose between being awake from pain and hoping it would pass and I could fall asleep or just being wired and then but pain free, yet also guarantee not to sleep, making pain the next day worse. At that appointment she wanted me to wait until I saw a different doctor to do anything even though that was 6 weeks away.

Now, that has come and gone, and I was just recently back to see her again, and she seemed more than content to leave me in a state where I was still feeling that the treatment I was getting was not doing enough to control the pain. On top of that, I was building a tolerance and that really worried me. I experience pain nearly every day, but only took the tylenol 3 some of the days because I'm worried about the addiction side of it. But lately, my fortitude for dealing with pain has been at an all time low, and I wasn't prescribed enough to take every day anyway. After pressing her to do something more, she prescribed a butrans patch**. That was two weeks ago. I didn't try the patch until a week and a half ago though (I wanted my husband to be home when I tried it in case there were problems). I've gotten no relief from the pain, though the side effects have been minimal. Early Nausea, but it's mostly passed, and some insomnia, but that has seemed to have passed too. But I've been sitting here with no pain relief and am just tired out from being in pain every day.

I called and said it wasn't working, and the answer I got was that I what until all the patches are gone and then they'll decide the next step. Now, she initially advised me it could take a few days to start working, and my own internet searches on the drug have suggested the same thing. But nothing like a month or even a full week. Frankly, I think that waiting another 2.5 weeks without any pain relief or any attempts to change that from my doctor is unacceptable, in light of the fact that my understanding is that it should be working by now. I've gone from limited functioning to severely limited functioning, and as the days have worn on I'm just getting more tired out from being in pain every day.

This is what I don't know, are my expectations unrealistic? I've never been in a pain management program before, so maybe this is normal. It isn't life threatening. It just feels really shitty. On top of that, the doctor I see for sleep trouble has more or less said he's at a dead end until the pain is better controlled (which, makes perfect sense to me; I can't sleep because I'm in pain).

Relevant information; I'm not seeing a rheumatologist. The first one that diagnosed me left the practice and I didn't want to follow him because he was frankly kind of an ass, and would argue with me over things other doctors advised or diagnosed. Second rheumatologist for second opinion was a much nicer guy, but bounced me back to the pain management program after running a battery of tests the first didn't, saying that the pain management program handles fibro cases once diagnosed. I've also been to a neurologist among many other doctors to try and figure this out.

*I'm not particularly fond of another type of opiate either, but was willing to give it a go to at least see if I'd get some relief and then start talking to her about non-opiate options. In case anyone at home is playing along.
posted by quin to Health & Fitness (16 answers total) 3 users marked this as a favorite
Best answer: It is absolutely not good medical care to leave you in pain. You are entitled to be as comfortable as possible. The patches should have worked within 12 hours, unless you are very small. Patch medications need body fat to be absorbed.

Other meds used for pain do take longer. But traditional pain meds (narcotics) should bring relief quickly.

Find a different doctor.
posted by Jandasmo at 11:01 AM on June 26, 2013 [4 favorites]

Yes, find a different doctor! For severe, debilitating pain, your doctor should have a process in place to increase or change your meds swiftly and reliably. See who else is covered by your insurance and try to get in to see them ASAP.

Also, have you considered "alternative" treatments? I'm not talking about supplements or other woo - I'm firmly against things that can't be scientifically studied and shown to be effective. I'm thinking more along the lines of therapy or hypnosis.

The mind is a very powerful thing - just as some forms of pain or other symptoms (rashes, etc) can be psychosomatic**, finding the right mental tools and learning to use them can also help you minimize or possibly eliminate pain that has a real physical cause as well.

** I'm not trying to imply that your pain is psychosomatic in any way. Just drawing the comparison that where the mind can cause problems, it can also help reduce them.
posted by trivia genius at 11:36 AM on June 26, 2013

2nd the different doc, or a different pain management program.

I'm relatively new to my chronic pain from a major trauma 2 years ago. I've been to a pain management clinic, and gotten pain meds through primary care and via back and other ortho docs. Overall -- it really impressed me that despite everything you hear about "those drugzzzz!!!", every doc I've seen has made it very clear that they'd give me whatever I felt I needed.

You do not sound like you're (anywhere close to) getting what you need. You need to sleep, first of all, then get on top of the pain (maybe short-term opiates), then figure out how to come back down to something that will work on a daily basis.

I'm kind of shocked that they're leaving you like this -- it sounds inhumane. I know how tiring it is, and I'm sorry to hear you're in this state.
posted by Dashy at 11:39 AM on June 26, 2013

I'm very sorry for what you're going through. I've been fighting constant neurologic pain for years, and trying to find a balance between pain relief and basic functionality (especially sleep) has been a real challenge. You really do need to champion yourself aggressively, which I think, in your case, may mean finding a new doctor. Lack of sleep is a true health risk, as is the exhaustion from constant pain and the stress of being made to feel as if you are somehow immoral or at fault when all you are asking for is to feel semi-normal and get a decent night’s rest. I also have to choose nightly between pain-induced insomnia and medication-induced insomnia, and yeah: not a good choice. I do sometimes find that a dose of Benadryl (diphenhydramine) taken before the pain meds will help me fall asleep (only sometimes, though). The Benadryl also sometimes makes me a bit drowsy the next day, but not as much as it used to.

The lack of sleep was ultimately my key to getting my doctor to work with me. I have a long commute, and I was having a lot of trouble staying awake for the drive. So I flat out told him that we had to find a solution, at least for the insomnia, before someone got seriously hurt. Maybe if you try a new doctor and just start from that position: You’re looking for a new doctor because the sleep problem is becoming a major health issue and the current doctors are not working closely enough with you to find a solution within a reasonable timeframe. Then, once you find a better life balance with that issue, it should be easier to approach the question of how to get some relief during the daytime while still maintaining.

Good luck.
posted by It's Raining Florence Henderson at 12:07 PM on June 26, 2013 [1 favorite]

Thanks everyone. You reaffirmed what I was feeling, but I wasn't sure if I just wasn't familiar with how the whole thing works.

I have actually tried hypnosis. It worked for a while (not perfect, but seemed to help reduce the urgency of the pain), then it didn't, so I'm taking a "break" (therapist suggested it) before going back to it. The problem seemed to be that I got to the point where I had some really bad pain over the winter, and that ended up with me arguing with the hypnosis recording in my head. I knew it was counter productive, but it didn't stop me.
posted by [insert clever name here] at 12:08 PM on June 26, 2013

This isn't acceptible, find a new doctor.
posted by Ruthless Bunny at 12:53 PM on June 26, 2013 [1 favorite]

Fibromyalgia is a weird duck. The medical profession and related literature are pretty unanimous in the opinion that there is at least some somatic component, meaning it's a very idiosyncratic disease. This makes it extraordinarily difficult to treat. There isn't even a standard list of diagnostic criteria. This means that you're dealing with a tough nut to crack, and you may well get as many opinions as you have doctors. Short version: no one knows what the hell is going on here. You're just going to need to keep trying, including changing doctors if needed, to find something that works for you.

But "works" is going to be an interesting term in this context. Pain management programs--and I've been in one--are not pain "elimination" programs. They're pain management programs. If the care providers involved can get you pain free, hey, that's great. But it's not necessarily the goal. The goal is to help you manage and mitigate pain through a variety of strategies, including but not limited to medication, with the ultimate goal of enabling you to live as normal and comfortable a life as possible. Particularly for conditions like this one, where they're basically just throwing stuff at the wall to see what sticks.

The thing to remember is that every option at a pain management specialist's disposal comes with both potential upsides and potential downsides. Take medication. Opiates tend to work pretty well for most people, but not at all for some, and what works wonderfully for person A may not work as well, or at all, for person B. And there are definite side effects to them, which based on your comments here suggests that you're aware of that. Dependence is clearly one danger, and some degree of impairment is a given. But nausea itching, depression, and other psych effects are well known. Opiates aren't the only thing with downsides either. Even NSAIDs and acetaminophen have side effects. The former aren't great for your kidneys, especially over the long term, and the latter can nuke your liver in a matter of hours. And if we were talking about a condition for which surgery was a potential option, it would probably be a last resort, as conservative treatment is uniformly preferred to invasive treatment.

But from your description, compliance is actually a problem. Your doctors have already prescribed two medications--codeine and butrans--that you have seemingly decided aren't working for you without actually following their directions. You may have good reasons for doing so--or you may not--but I can guarantee you that unless you explain that to your physician, they're necessarily going to be less pro-active about trying different things under the not-unreasonable assumption that there's a decent chance that you won't do what they tell you to anyway. Physicians are generally unwilling to move from conservative to more aggressive treatments unless the conservative treatments have actually been tried and found wanting. Difficult and left untried will not encourage them to be inventive. If you really want them to be responsive, do what they tell you to do, deal with the results, and then come back and say "Look, I really did try this and it isn't working." It'll be a lot harder to write you off that way.

All of which to say that you should definitely work with your doctors to see if there are better options out there, as the fact that you're having trouble sleeping suggests that things aren't working as well as they might. As to expections? The fact that you are not pain free is unfortunate, but it might be something you'll just have to deal with. Lots of people do. I'm one of them. I've had pain-related trouble sleeping for the better part of the last fifteen years. So I feel for you, but you do need to understand that pain management specialists don't necessarily consider "pain free" as their final goal. Getting you there might well be impossible. By all means, keep at it to see if you can't improve your situation, but don't have your heart set on something which isn't likely to happen. You may just have to be content with a reduction, particularly if you want to avoid things like opiates.
posted by valkyryn at 1:07 PM on June 26, 2013 [4 favorites]

Reconsider opiates. Seriously.

And I don't think that pain free is realistic all the time, but that doesn't mean they shouldn't try to aim for that as a goal.

With a disease as challenging to treat effectively as fibromyalgia, you have to advocate for yourself; frankly, you know your body way better than your doctors do, and if they aren't listening to you, then you need to bring someone with you who can substantiate the veracity of your complaints.

If they won't respond to your needs, then you should look into changing to another pain management centre/doctor. Good luck. It sucks to be sick and in pain, especially when your doctor seem to care less than a bunch of strangers on the internet.
posted by guster4lovers at 1:27 PM on June 26, 2013

Thanks everyone. I think the answer is its time for a new doctor. Valkyryn, your answer was helpful in a way I doubt you meant it. I've never been given a clear answer on how I should be using the tylenol 3. It was and still is prescribed as a stop gap by my PCP until I got into the pain program. When I talked to my pain management doc about it, I've gotten very noncommittal answers about how I'm doing it sounds fine, but no answer to when I told her it was inadequate, or that my sleep doctor specifically said I need the pain doctors to be more aggressive about managing the pain at night.

Oh, my pain doc agreed with the latter part when brought up during my visits, but she always wanted to wait for something (a 2nd rheumatologist, starting to see a integrative med doc, or just, randomly, the next appointment.) She was trying to wrap up the last appointment without doing or changing anything when I pressed her and said it's been 7 months, I need better pain control, especially at night and that's what my sleep doctor has been pushing me to get from pain management from the very beginning (I really do wish doctors would just talk directly to one another). So she agreed and prescribed the butrans. I realize her hands are somewhat tied based on bad or no reactions to various fibro drugs.. But she's not done much by way of managing anything.

The problem is I feel like I'm going backwards on the butrans. I made a little bit of progress this spring thanks to a graded exercise program from an integrative medicine doctor. But the lack of relief and sleep has taken me 10 steps back. And I was following the butrans instructions, she just changed the rules when I called to say it wasn't working (which was part of what she told me to do.) Now, more waiting for no particular reason. Her, the booklet I was given and the internet all say a few days for full effect, not a month. I think I don't advocate strongly enough at the doctors office. But I can't see any reason to be in pain for two more weeks.

As for why I want to avoid opiates... There are a few reasons. One, they seem to send me to vomit town. I realize both butrans and tylenol 3 are opiates, but tylenol 3 seems weak enough to not bother my stomach. Butrans made me nauseous at first, but that mostly passed with the help of Benedryl. And I don't know what it will be like at the dose that is effective for me. But other times I've needed opiates, I've had to be on antiemetics or I vomit.

The other two reasons, probably more surmountable are the social stigma and I don't like how loopy I get. A forth reason is that butrans definitely gave me insomnia and I hardly slept the first 2 days I was on it, so I am sort of expecting I might have that reaction to all opiates. I haven't noticed it on the timed I've taken others (surgery, wisdom teeth out) but I was trying hard to balance pain and nausea, sometimes losing at both so sleep was th least thing on my mind...
posted by [insert clever name here] at 5:29 PM on June 26, 2013

Oh, and in the meantime I called and asked about what I can do while waiting on the patch since I'm not getting relief and it's taken a significant toll on my already reduced ability to function.
posted by [insert clever name here] at 6:01 PM on June 26, 2013

This may not make sense depending on what your actual conversation with them has been, but I offer you my opinion.

When you deal with pain management docs, you have to remember, you're talking to someone who deals with drug addicts, ALL DAY. I am not a pain management doc, but I am a doc who deals with drug addicts a lot. And from my perspective, and I know from many other doctors' perspectives, it is incredibly emotionally draining to deal with drug addicts all day. They lie. They manipulate. They shout. They guilt trip. They curse and fulminate. They plead and cajole. It is just so hard.

When you are the non-drug-addict dealing with the pain management doc, you are in the minority, and you have to be very aware that everything you say is being heard through the filter of someone who is expecting you to try to manipulate, lie, shout, curse, and so forth in order to get the largest amounts of the strongest pain medications they can wangle. In fact, because you don't hang out with drug seekers all day, you may not even realize that some of the things you are saying are so typical of drug seekers, that you're setting off all kinds of red flags in your doctor's head when you word your requests in a certain way.

So if you say "I need you to be more aggressive with my medication regimen" they may be hearing "I want more narcotics!"
And if you say "This Butrans patch isn't working for me. I need something stronger." they may hear "I want more narcotics!"

And every time they think they hear you asking for more narcotics, they are going to be less inclined to take you seriously or move quickly to change your meds, because they don't know if it's your addiction talking or a real indicator that you need a different med.

In fact, I'd encourage people with chronic pain conditions to NEVER use the qualifier "stronger" about medications. Because really, if you're not looking for narcotics, what does "stronger" mean? Strong medications aren't really what you want, unless you want narcotics - you just want medications that work. You want different medications, not stronger ones, not more aggressive ones. Because there really aren't pain medications that are "stronger" or "better" or "more aggressive" for every patient with pain, there are only ones that work better for that particular person's pain, or less well.

Now, if you specified to your doc that you want to get off narcotics and you want to stop the Butrans patch and get on some non-narcotic pain regimen, and you want to keep trying non-narcotic medications and treatments until you find one that works or exhaust the possibilities.... well, then you definitely need a new doctor, because that would be just about any pain management doctor's dream.
posted by treehorn+bunny at 7:11 PM on June 26, 2013 [3 favorites]

With the worry of the DEA and all that comes with being a pain management doctor they very often start you out very slowly on medications, and will not change meds in the middle of a prescription period. They typically will wait until your next appointment and until you are almost out of the previous medication.

With fibro, and the drugs typically used (gabapentin and lyrica) not helping you and you pushing back on not really wanting narcotics, they have to be careful. NSAIDs are hard on your body. They are tough on your stomach and kidneys. Acetaminophen is tough on your liver.

Narcotics, when used correctly, are easier on the body. If you truly need them, try them, give it some time, the loopiness will go away, as often will the nausea.

Ask your doctor why they are doing things they way you stated. There maybe a logical reason. If there is not, try another pain management doctor.

The one biggest thing is that they were noncommittal about the T3. Typically, when on a pain contract, you are only allowed to take pain medications prescribed by your pain doctor.
posted by SuzySmith at 8:15 PM on June 26, 2013

Best answer: Trust me when I tell you that chronic pain sufferers know all too fucking well that we are suspects for life. It is always, always made clear. From the doctors. The nurses. The pharmacists. Family members. Coworkers and bosses. Ourselves. Trust me when I tell you that nobody with chronic pain ever needs reminding that asking for help makes us look like addicts. We know, we know, we know. We know.
posted by It's Raining Florence Henderson at 8:32 PM on June 26, 2013 [4 favorites]

Treehorn+Bunny, I had a long response written back, but it was just spinning my wheels and expressing my exasperation. The short version is that I know it's an issue, and I understand why doctors are cautious, and every time someone says anything about opiates I get nervous as well as why I don't want to be taking any, even tylenol 3. Butrans was her suggestion after a long and terrible winter and only small improvements this spring. I'm just emotionally drained from being in pain even with some relief from the tylenol 3.

Opiates make me extremely sick, I even got a special tag for undergoing surgery a few years back to make sure the anesthesiologist knew I am prone to vomiting when I am given opiates. (Up until that point, I didn't know they used opiates during the actual surgery.) Tylenol 3 seems to be the exception, probably because it's so weak compared to others. Butran too, but that's likely because it's not doing much of anything. But she suggested it, saying it's mode of administration and the type of opiate it is makes it less likely to make me throwing up sick from it.

I don't want to be on opiates in general, even if I could tolerate them; it's a conversation I've had with pretty much every doctor, and a big part of that motivation is exactly what you, SuzySmith and It's Raining Florence Henderson have said from different angles - there is a huge stigma and lots of suspicion around opiate use. I'd rather avoid it all together. Six months ago I would have said no all together with the butrans, but now I am just weary from it all and want something to help, especially at night.

SuzySmith, trying to talk to my doctor outside appointments is very difficult. Only the nurses call back, and it's a game of "relay the question." and it makes complex questions difficult. But you're right, I'll try tomorrow when the nurse calls back. I suspect the answer will be something vague like "Well sometimes Dr. X wants to make sure that something something something blah non-answer." without consulting the doctor. That's usually how it goes, with the nurse speculating on what she thinks the doctor's motivation is.

I have no idea why my doctor has me still using the tylenol 3 prescribed by my Primary Care Physician. To be honest, I thought it was weird she didn't take over the prescription, but I have a lot of scripts like that. One doc prescribed it, another said take it this way more often, but kept it with the other doc. So yeah, I thought it was weird too. And this isn't a small, off the beaten path clinic. It's the big one associated with and in the local hospital. Maybe that's the problem though, too big, too little time to deal with a "simple" case of fibromyalgia. I often feel like the doctor doesn't know what to do about me.

The good news is I have an appointment with a pain specialist next week who specializes in fibromyalgia. I set up the appointment 2+ months ago. I really just wanted to see him as a consult if he agreed with the treatment I was getting, but also if he thought I really have fibro. I have doubts about my diagnosis, and even though pain doctors don't do a lot of diagnosing, I thought if he's very familiar with it, he can probably rule it out if it's not. And if nothing else, offer some guidance if I'm on the right track since most, if not all the doctors I've seen have admitted some level of not knowing what to do for me next. He's the only doctor in the area I've found that focuses on fibromyalgia, other than the kind of wackadoo docs that want to sell you supplements and wave crystals over you to make your wallet pain disappear. And it just so happens that it falls right at time I'm getting fed up with this doctor, so I may have a new doc lined up right away rather than waiting weeks/months to get in with someplace new.
posted by [insert clever name here] at 11:07 PM on June 26, 2013

Listen, as a doctor who has seen all too many patients with fibromyalgia, I can't help but think that most responders are pointing you in the wrong direction (perhaps save valkyryn). Sure, unresponsive doctors should be reconsidered and replaced. Yes, worries over drug-seeking and such stand in the way of appropriate pain management for all too many patients.

But the real issue is that fibromyalgia pain is very, very difficult to treat. And while I don't want to sound uncharitable, in this context I do believe that an expectation that your pain will be controlled pharmacologically is somewhat unrealistic. There is no proven analgesic drug therapy for fibro, and some of the data suggests that opioids in patients with fibro usually do more harm than good, as your experience and intuition are suggesting. This has been my experience after seeing tons of fibromyalgia sufferers on opioids -- in my opinion (and I say this anecdotally as someone who treats other problems, and not as a pain management expert), the best way to describe this would be a road to hell paved with good intentions. The doses go up, the pain doesn't get better, dependence develops, and the constipation and other side-effects get exponentially worse (and again anecdotally, fibro patients seem to be much more sensitive to drug side effects).

I have seen a number of fibromyalgia success stories, and not one of them involved escalating drug treatments, tons of medications, or any opioids. What do they all have in common? Usually a combination of lifestyle modification, a focus on exercise including yoga and tai chi, a form or multiple forms of therapy (biofeedback/mindfulness, CBT, support groups, etc.), improved diet, stress reduction, optimized sleep hygeine, and in most cases, limited pharmacotherapy with tri-cyclic antidepressants or SNRIs. The target is the mind-body connection; I firmly believe that.

You need to find a multi-disciplinary team/center that focuses on fibromyalgia, and can attack it on all fronts (not just analgesic bandaid management). And again, if you ask me, coming at this with the expectation that a pill will solve your problem is going to do more harm than good in the long run.
posted by drpynchon at 9:32 AM on June 28, 2013 [3 favorites]

I just wanted to jump in and put an update in for future readers. I saw the pain doctor that I was frustrated with at my regularly scheduled appointment and she said there was a miscommunication over the butrans, and that A) it was okay to take tylenol 3 for the breakthrough pain as long as I wasn't taking a lot and B) the next course of action was to go up to the next higher dose, and she wasn't sure why that wasn't communicated to me. So this is what happens when you play telephone with the doctors office. I called the nurses line, left a message (my only option), nurse tells doctor, doctor tells nurse, nurse talks to me, I have follow up questions, nurse takes it back to doctor, doctor talks to nurse, blah blah blah.

It was a mess, and I'm not entirely sure it was a communication problem because I have one of the voicemail messages where the nurse was very clear that I had to stay on the dose I was on, I had to just "deal" with the pain, and that they wouldn't do anything until my appointment in one month.

Drpychon, I don't think you're wrong in a general sense, but I was in an extremely bad spot and the lack of responsiveness from that doctor was incredible frustrating, and I think the telephone tag of not speaking to the doctor or not being able to get in when there is a problem is something I am not comfortable with. Every other doctor I have I can expect to speak with them within 24-48 hours and get an appointment within the week. Maybe pain clinics are different because of the nature of the practice, but if that is true, then someone has failed somewhere in explaining this to me.

As an aside, the other pain specialist who is the fibromyalgia doctor saw me twice now, and he is unconvinced it is fibromyalgia. He doesn't know what it is (I see him again in 3 weeks after he's dug into my medical history more in depth) and he said he's not willing to say for sure that it's not fibromyalgia, but he doesn't think it presents like fibromyalgia he typically sees. Which is ironic because when I told the other pain doc (the one that I'm having trouble with) , she said she's doubted that diagnosis and has that in her notes. I'm still seeing her because Fibromyalgia doctor said I should stay with them until he feels he's evaluated my case fully, and until he's seen the pain clinic's records. They were supposed to be sent to him a month ago. I don't know who screwed up, but given the supposed "miscommunication" about my medication, I'm leaning towards my clinic being the problem.

Thanks everyone for your thoughts; you helped me confirm I wasn't crazy when I thought I wasn't getting the help I needed. As well as think about other issues that might have played into problems with pain medication and the difficulty unique to that area of medicine.
posted by [insert clever name here] at 11:03 PM on August 7, 2013

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