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.   😉  ❤

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Chronic Pain in Its Various Forms…and Dysautonomia

While I’ve lost count of the exact number of days, this current ‘spell’ of severe headaches has gone on for at least 4-5 weeks, with maybe five or six days of no headaches at all in any given day.  Of course, it isn’t ‘just’ a headache.  I get the dreaded nausea along with it.   There have been times during most days when the pain lessens, but most of the time it’s there.  Today has been pretty bad- I’m taking a chance by blogging, since the scrolling on a page can make things worse, but I have to ‘talk’ to someone.

I e-mailed my primary doc about changing the nausea meds. After several years on Compazine, it seems it’s lost its touch. The leftover Zofran (from chemotherapy for leukemia) doesn’t do much anymore, either.  She called in some Phenergan for me.  The pharmacy didn’t have the full 90-day supply available, but my dad brought me the 12 pills they had. They will call when the rest of it is available.  I was just so thankful to get anything that may offer a bit of relief from something.

I’ve been trying various ‘schedules’ of different pain meds, from different over-the-counter pain killers (Excedrin, Aleve) to a weaker  prescription med (tramadol) to a stronger prescription med (Norco 10/325).  None of it is working.   I even did a ‘bad’ thing today before taking any other prescription meds (so no risk of interactions) and took some methadone that I have leftover from a while back. It isn’t working, and I’m not willing to take another dose before talking to my pain management doctor.  He’s a board certified pain management doc, and not a ‘doctor feel-good’.  He has ‘rules’, which I respect.  I don’t want a doc who calls things in over the phone without assessing me.  I don’t want the drugs per se. I want less pain.  I don’t expect to ever be pain free, but I would like a lesser degree of pain.

Pain-free isn’t a realistic expectation with degenerative disc disease, degenerative joint disease, fibromyalgia, bulging discs (neck),  diabetic nerve pain,  and chronic headaches.  I’m just looking for a degree of relief that keeps me able to take care of the basic chores around home, and keeps me able to do some ‘minimal’  fun activities, such as watching a movie on TV, playing some online games, playing with my puppy, or other such forms of distraction and entertainment.  The last time I talked to my pain doc, we talked about the nature of degenerative disorders… they don’t get better by definition.  The fibromyalgia and headaches are just ‘bonus’ disorders 😦

I have to be careful about pain in regards to the dysautonomia, as well.  Pain is one of my major ‘triggers’ for heart rate and blood pressure changes that can land me on the floor, passed out.  Those who have severe menstrual cramps that cause lightheadedness and feeling ‘faint’ go through something that is essentially a result of the same thing- vasovagal nerve stimulation.  Vasovagal syncope (fainting) is fairly common. But any sort of fainting is a risk for injury.  And injury is a risk for further mobility limitations. I can’t risk that.  I want to continue to live on my own, and I can’t afford help (nor do I want someone hovering over me). Side effects of many pain meds also increase the risk of lowered blood pressure.  I have to keep that in mind with any new medication, as the interactions with the other meds I take can be risky.  I ‘ground’ myself to home when I am put on any new meds, just to be sure I’m not caught off guard at the grocery store or pharmacy (about the only places I go) with some drop in blood pressure from a new med not playing nicely with something else I’m on.

I’m going to have to go see my pain management doctor soon, to discuss a different plan.  I’ve been on stronger meds before, but have asked to go back on weaker meds, knowing that this is a lifelong thing, and I need options for the future.  For the degenerative disorders, spine surgery and another knee replacement are likely down the line, as well as hip replacements. I want to postpone those as long as possible. 😮  There is the possibility of having some sort of pain-nerve impulse thingie implanted (I need to read more about that).  I’m not all that gung ho about ‘stuff’ being put into my body that involves hardware.  I’m hoping that the weight loss with Nutrisystem will also help my knees and hips… my spine is a wreck from neck to bum, so weight loss will be good, but not a ‘fix’.

Methadone scares me. And, today, it’s not working.  But, it might be something I have to try more regularly to get a final ‘verdict’ as far as its real efficacy.  I’m also very reluctant to take methadone after working drug/alcohol rehab, and seeing how it is THE worst in terms of withdrawal. Those patients made heroin detox look like a cakewalk – and heroin addicts had it bad enough.  I understand that I wouldn’t be taking it for illegal drug replacement, and that chronic pain patients who take medications as prescribed are highly unlikely to develop true addiction (different than physical tolerance or physical dependence).  Only %3-5 of patients who take pain medications as prescribed go on to become addicted (which includes the strong psychological components of the ‘high’, cravings, etc). Ninety-five to ninety-seven percent of us don’t become addicted.  The ‘tolerance’ and dependence may require dosage adjustments.  That’s not because of addiction, but the physical acclimation of the body to the medication.  It gets used to the drug being there, and requires dosage changes to continue to provide pain relief.  I don’t like that, but I understand it.

I’ve also been on the fentanyl patch.  I don’t remember it being all that great at the dose I was on, but it might be something else that is considered.  The nice thing about ‘the patch’ was a continuous release of medication, so no ups and downs depending on me taking another dose.  It was also not hard to stop taking.  That has huge ‘benefit’ written all over it.  When I wanted to go off of it, I was weaned down to lower dose patches, and then given pain pills to taper off of the narcotics altogether- no withdrawal symptoms, and it didn’t take that long.

For ‘breakthrough pain’ on either methadone or fentanyl (or the current Norco), I’ve taken tramadol.  It’s not as likely to interact with the stronger narcotics or create an increased risk for respiratory depression (which is essentially what causes death in drug overdoses- accidental or otherwise).  It’s not a great pain killer, but it can take the edge off of the joint, muscle, and head pain that is getting worse.  Things like ibuprofen and naproxen sodium have limited use with the headaches and fibromyalgia.  They do help with the joint and disc disease to some degree, with no neurological or cardiovascular effects.  Worth having around  and taking !

I’ve tried physical therapy, chiropracters, Imitrex (which helped somewhat), heat (but that triggers the dysautonomia), cold, TENS unit, various pillows, and stuff to unclog my sinuses.  If I thought chewing on the siding of my house would help, I’d be out there with the woodpeckers.  While I’m not losing time off of work (been disabled since 2004), this pain of various sorts does change what I am able to do here AT home.  Things like laundry, vacuuming, other cleaning, etc are put on hold quite often.  If I’m having one of the ‘bad’ days, there’s no way I’ll get in a car and go to the grocery store, pharmacy, or MD appointments (the only places I go).

All I know is that the past several weeks (that have come in waves for years) are getting really old. I’m going to have to stop being stubborn about the stronger meds if I want any quality of life between ‘waves’.  I’m already limited. I want to have as much ability to function as possible, and this level and duration of pain isn’t OK.  My pain doc has been very good about letting me let him know when I need something stronger, since I’ve been so hard-headed about using the stuff.  He knows when I say I’ve had ‘enough’ that  I’m not looking for drugs- I want to not hurt (as much).  I need to make the appointment, and go see him (he does NO prescribing/refills over the phone past the ones on any written prescription).  He does NO dosage or medication changes over the phone.  So, I have to drag my butt in there.  He’ll probably do some sort of injection (spine, jaw, neck, occipital nerve blocks, facet injections). The ones in my lower spine seem to help the most- I could tell that my legs hurt less when I’m at the store after I got the last shot.  I may ask for my left knee to get zapped.

Now to just find a day to go and see him when I feel well enough to see a doctor.  But even though it’s been pretty unpleasant lately, I realize that I have so much to be thankful for.  I know that God hasn’t deserted me, and that I can get a lot of comfort in knowing that whenever I get to eternity, I’ll get a new body without pain.  That helps. 🙂

Update:   After being on CPAP for more than a year, the daily headaches are pretty much gone !  They were caused by hypoxia from not breathing at night.  The rest of the stuff is still a bummer, and I’m off to see my regular MD today (10-19-2016) to get medical clearance for massages and a chiropractor.