Pain Management for the Non-addicted

Hydrocodone (Norco, Lortab, and Vicodin’s main ingredient) has been in the news a lot in the last few months.  People are dying from overdoses.  While that is very sad, it has created mayhem for those who take meds as directed.  Those who follow the rules are being ‘punished’ because of the actions of those who don’t (yes, I believe addiction is a disease, but there is a point in the beginning where using chemicals is a choice; genetics is said to load the gun, circumstance pulls the trigger, and the addict *at first* has their finger on the trigger… addiction doesn’t happen at literal gunpoint).

Hydrocodone has been moved from a schedule III to a schedule II.  That means that any refills must have a paper prescription- no getting phoned in refills.  Those with chronic pain must now go to the MD office and get the piece of paper to take to the pharmacy, then wait for the prescription to be filled, and then go back home.  That is ludicrous when someone hurts so much that leaving home for anything is painful.  My spine is collapsing, my discs are degrading, my thighs are shrinking from neuropathy, and I’ve got fibromyalgia.  I also have chronic headaches.  I’m in a lot of pain, more days than not. I don’t remember ‘pain-free’.   And now, I have to deal with the actions of people I have never met who have emotional issues that they use drugs I need to squelch.  Those people are now dictating my medical care.

Less than %6 of those who are prescribed opiates who TAKE THEM AS PRESCRIBED ever become addicted (Google it).  So, %94+ of those who need pain meds for chronic conditions are now subject to stricter rules because of those who use them for psychological reasons/pain.  I’ve had a prescription for one form of narcotic or another for almost 20 years.  I might take the meds for a few days and then take none for a couple of weeks.   I might take one pill on those days, or I might take two or three across the 24-hour period.  Depending on the type of pain I’m having, an extra gabapentin (seizure med also used in pain control) or even Excedrin will work better than the opiate.  Depending on the headache type, a triptan works much better than an opiate.  But on those days when narcotics are the only thing that will make it worth taking another breath so I can remind myself that it will ease up at some point, I shouldn’t have to pay for what an addict is doing.

Addicts are going to get their opiates (if that’s their drug of choice) no matter what.  I see this change in ‘rules’ driving more people to use herion or other illegally obtained drugs, and anticipate notable jumps in heroin deaths and overdoses over the next few years.  I already know of an entire medical group’s practice (for one entire hospital system here) that no longer allows primary care docs to prescribe pain meds because of this new change in the law (doctors already are monitored for how many prescriptions they write for narcotics, how many pills they give at a time, etc).  So the doc who knows the patient the best isn’t allowed to determine what is best for him/her.

My primary care doc  initially wasn’t comfortable in prescribing stronger  opiates when regular Vicodin (hydrocodone 5mg w/ acetaminophen 500mg) wasn’t working (after the discontinuation of Darvocet, which was effective), so I went to see a board certified pain management doctor.  Once I had a ‘system’ of what med to use when, she was then OK with prescribing, so I could have one doctor prescribing the vast majority of my prescriptions (my neurologist is the only other one), using one local pharmacy, and one mail-order pharmacy.

I have worked as a detox RN in a treatment center.  I ‘get’ that drug addiction is a disease.  I have a great deal of empathy for those who are in treatment and making positive changes in their lives.  But their inability to handle meds should not determine my medical care.  What someone else can’t control shouldn’t create issues for MY doctor when I am able to take meds as prescribed, and have for two decades (for chronic pain).  Acetaminophen (Tylenol) is the leading cause of liver failure in this country…. why isn’t that scheduled (or withdrawn from the market)?  Alcohol-related deaths can take out entire families at a time w/drunk driving- should we have licenses for buying booze?  Why are those with legitimate, documented medical disorders that cause pain made to ‘pay’ for those who don’t use the meds as directed?

My primary care doc and pain management doc (who I only see sporadically at this point) know me better than the DEA does.  My pharmacist can vouch for no hinky requests for refills.  I’ve never shown up in an ER asking for pain meds.  I don’t crave narcotics.  I don’t take larger doses, or more frequent doses than are prescribed.  I follow the rules.  And now, especially with winter approaching, I will have to go pick up a piece of paper (getting in and out of the car is painful in the summer, let alone the cold) which, until October 6,2014, was done by phone between pharmacy and the doc’s office.  I had to go every three months to be re-evaluated (which still stands), which isn’t a bad thing.  I don’t think pain meds should be thrown around as if they are insignificant… but  addiction isn’t my problem.  Pain is.  There is a huge difference.  I don’t even let myself get to the point of physical tolerance (when someone takes something as prescribed, and the body becomes used to it being there… withdrawal symptoms can happen if the med is abruptly stopped- and that is not the same as addiction).  There is a gross lack of awareness between addiction, dependence, abuse, and tolerance- and I think that applies to policy-makers as well.

No law is going to save people from themselves if they either don’t want to be saved, or don’t see that they have a problem.  They might not ‘get it’ on the first run through rehab or 12-step meetings… but those who keep at recovery will eventually get there, and be clean.

 

For those who are now in a position of not having a physician who will prescribe pain meds (whether from fear, ignorance, or restrictions from his/her employer- you may not know why they have changed their policies), here are some tips from an RN of nearly 30 years, who has taken care of addicts, chronic pain patients, and lives with chronic pain:

1.  See ONLY a board certified pain management doctor for pain control.  They often have ‘rules’ such as random drug screens, no dosage change over the phone, limits as to how many months before actually making an in-person appointment (vs. picking up the prescription from the desk), etc. Do NOT see a doc who asks how you will pay, writes a prescription, and has a line around the block…. Do. Not. Go. There.   😮

2.  Use only one pharmacy (two ONLY if you also get meds from a mail-order pharmacy for other chronic conditions).  Let your doctors know which pharmacy you use, and offer to get copies of records if they want them.  Pharmacies are bound by HIPAA (privacy laws), and might not be able to tell the doc asking what other docs have prescribed (if someone from the same practice is on call, they probably can, since they are acting on your regular doc’s behalf for you).

3.  Don’t dramatize pain.  Tell the doctor where the pain is, how bad it is, when it is better, when it is worse, what helps, and what makes it escalate.  You may have pain for the rest of your life- don’t wear out the extreme descriptions when you have 30-65 or more years to describe it.  Sometimes letting your doctor know what the pain keeps you from doing is helpful…. those pain scales are kind of useless for chronic pain.  But, if you tell your doctor that when it’s moderate, you have to postpone laundry, or if it’s moderately severe, you have to cancel appointments, that can give better information for chronic pain.  It’s way different than acute pain.

4.  Agree to get tests done to more clearly identify what is causing pain.  If you refuse to get diagnostic tests done, that can indicate that you know that nothing is going to show up.  Not all disorders show up on tests, but working with your doctor when they want more information via testing will go a long way.

5.  NEVER change doses or frequency without talking to the doctor who prescribed the pain meds (or any meds, for that matter), unless you have been given specific instructions.   There are some pain meds that have a very narrow window between effective dose and the dose that will cause you to stop breathing.

6.   Don’t ever forget the good parts of your life.  You are not defined by your pain or any other medical conditions.  You decide if you are happy or not.  You decide if you focus on nothing else.  I know that there are days (and sometimes weeks) when you really can’t focus on anything else for much of the time… but when you can, take advantage of those days and be thankful for your pets, family, friends, the ability  to still work (I’d give just about anything to still be working as an RN), your interests, etc.  Your attitude is completely in your control, even if nothing else seems to be.   😉  ❤

Frustration with Chronic Health Issues and Pain Control

Yes, I know I write about this often.  It’s my primary way to get stuff out of my head and blow off some steam.  I figure that people can choose if they read this or not; I have no choice living with it.   I’m frustrated.  I’ve had more stuff going on the last few weeks that have added something else to the list of physical problems.  I broke a tooth (doing what, I’m not sure), and when I went to have it fixed, I opened my mouth really wide and felt something pop or pull- something ‘not right’- in my jaw.  I got a bunch of novocaine for the tooth repair, so didn’t think much of the jaw until the next day.  I still thought it was possibly just a muscle strain, so tried to blow it off. That worked for about a week and a half, each day getting a little bit worse.  I went to an urgent care clinic on the weekend when the pain got pretty bad, and the lackluster nurse practitioner said he thought it was TMJ.  I always thought that was a more chronic wear and tear thing, but evidently not.  It can be acute or chronic.  I had the other side of my jaw knocked out of place during a rape/attack in 1987, and while it has never closed right, it never hurt- but I wonder if it set up the other side to be more sensitive to injuries.  I don’t know.  I’m just ticked off.  It wasn’t anybody’s fault when this happened a few weeks ago- I’m just tired of something else going wrong.

I went to see my pain management doc, and he gave me more info about temporo-mandibular joint issues.  He said that my description sounded fairly typical.  He felt the ‘popping’ and ‘crunchy’ stuff when I opened my mouth. He thought an injection into the jaw joint might help (he’s injected my spine several times so getting ‘shot’ didn’t bother me).  Initially, the injection only lasted about 6 hours, but today (2 days after the injection), it does feel better.  I know that sometimes the steroids take some time to kick in.  I’ve since read that injections into the TMJ can cause increased joint destruction if done more than three times a year, or more often than every 3 months. No problem.

The pain doc also increased the frequency of an opiate I take (fairly mild one), and I ‘gave in’ and took it more frequently yesterday, per the new orders.  That may have affected the improvement today as well. I get so tired of dealing with pain management issues.  I’ve worked in the drug and alcohol rehab business as a charge nurse (RN) in detox.  I’ve seen what addiction looks like.  I’m not someone who is likely to take too many meds- if anything I back off.  I’ve asked for weaker meds more than once when stronger meds were offered. I figure I need to have something  in the future since degenerative disc and joint diseases aren’t going to get better.  Fibromyalgia is a bugger on a good day.  The chronic headaches don’t respond to many medications.  And, because of the ‘opiate hype’ from  high profile situations that went bad, I feel I have to defend my right to not live in constant pain because of someone else’s addiction.  I’m not an addict.  I don’t want pain meds to take care of emotional issues- I want to have decreased physical pain, taking meds as they are prescribed.  I just want to be able to stand being in my own body.

My pain management MD is board certified, and has specific rules for remaining his patient.  If people don’t follow HIS rules, they are no longer his patient.  Done.  I like that.  I also like that he doesn’t act as if my complaints of pain are nothing but ‘drug seeking’ behaviors seen with addicts.  He listens- and that alone is helpful.  I know he’s not judging what I tell him about my pain.   I’m sure he does mental assessments to look for red flags, but I go out of my way to not give him any.  I never ask for refills a minute before they are ‘due’.   I never claim I’ve dropped a prescription down the sink.  I don’t adjust dosing on my own (even though I have plenty of nursing drug manuals to find safe dosage limits).  I don’t mess with the plan.  I’m compliant.  He, in turn, isn’t extremely picky about the time interval between the allotted number of pills prescribed in a day.  He IS definite about how many pills/24 hour period he will allow.  That works for me.  If I take a pill and in an hour or two, I’m still not doing well, I can take another.  Chances are, that will get me through 6-8 hours, or longer.  He does allow for non-opiate meds for ‘breakthrough’ pain. The biggest help is knowing that something is available.  I can put off taking something if I know it’s there- I don’t have to ration to the point of living inhumanely. But I don’t have to take the allotted pills every day either.  I prefer not to.

Addiction involves a lot of components, most notably continuing to use the chemical in spite of negative consequences, and using the chemical for something other than its primary indicated use.  Medicating emotions with medications for physical pain is a huge trigger for addicts.  Many  addicts start out with physical injuries needing physical relief, and end up getting more of a positive emotional reaction that keeps them looking for more. No matter what.  I do believe it’s a disease. Nobody starts out hoping to become an addict.  But, it does screw things up a LOT for those of us who are not addicts and simply want to be able to stand being in a body that hurts all the time.  Statistics state that for non-addicts who are prescribed opiates, and use them as directed, only % 2-5 become addicted.  That’s not the same as dependence or tolerance (the body’s adjustment to having the chemical on board on a regular basis).  I purposely don’t take the stronger pain meds I’ve got (still not that strong in the opiate world) on consecutive days UNLESS I’m dealing with an acute situation.  Like my jaw.  But, if I do take the meds as ordered for 2-3 days, the relief is good enough that I can go back to non-narcotic options… anti-inflammatories, topical creams, ice packs, massage, etc.  I don’t expect to be pain free. That isn’t a reasonable expectation.  But an attempt at humane existence is reasonable, I think.

SO (in general), because %2-5 have problems, % 95-98 are treated as if they simply want a buzz.  That doesn’t add up in my book.  But the ‘problem patients’ are often very high profile celebrities, and anything to do with pain management gets lumped with them.  Opiates are a valuable part of being able to tolerate and treat physical pain.  I know that former co-workers (who are in recovery and have a history of addiction) at the drug and alcohol rehab place don’t agree with opiate prescriptions being used much at all.  There’s a big ‘anti-pain medication’ mindset out there.  And, non-recovering MDs take that stance out of fear and misinformation as well, I think.  They run scared.

My primary care doc isn’t comfortable prescribing opiates for a chronic pain scenario.  That’s fine.  We have an agreement that she can contact my pain doc at any time, and I let her know about any changes in my meds after I see him.  Everything is above board.  Total transparency.  And I don’t ask her for narcotics.  I do discuss non-narcotic pain meds with her, since she manages most of my medications for my list of chronic disorders.  Anti-inflammatory meds are in her domain.

My dad asked if the pills I take will make me addicted. I told him that I’m not an addict, so that is extremely  unlikely.  Addicts become addicted.  Non-addicts seldom do.  But, nobody seems to want to hear about the benefits of treating pain with medications.  Since nobody can see or feel other people’s pain, it often gets minimized.  If it doesn’t bother someone else, why should the one in pain be complaining?  Because an addict can’t handle a prescription for narcotics, then nobody should be given pain relief if they experience the level of pain that narcotics are appropriate for.  It sucks!!

I’m fortunate.  My pain management doc has ‘house rules’ that make sense. He can require a urine drug test at any time.  He doesn’t discuss or make dosage changes over the phone.  If he finds out that someone is jacking with the prescription frequency or dosage, that’s it.   I respect that.   I want someone to have those kinds of rules so he can treat people who are there for legitimate physical pain, who are seeking anything that will make existing more tolerable- not to get loaded.  I no longer have a frame of reference for ‘pain free’…. those 1-10 pain scales are a joke.  I’m always at least a 5-6, which sort of resets the whole thing.  Those scales don’t work for chronic pain. I can use them for new pain (like my jaw).

Regardless, I’m still thankful for a lot.  I’ve got a routine down, and know what my limitations are.  I ‘look OK’ so sometimes I feel very misunderstood.  But, I’m still able to live on my own, and enjoy my puppy, computer, and TV.  I don’t require a lot of time with other humans (which is very fortunate).  I have contact with friends on Facebook even if I don’t have much ‘in real life’ time with them.   I have a relationship with God that gets me through a lot.  If I didn’t have some sort of spiritual belief system, I don’t think I’d be able to tolerate a lot of what has simply become ‘normal’.  I also have the promise that in eternity, I’ll have a new body, and no more pain or disease. 🙂