Pain Medication Part Three: Withdrawal is Real, but Still No Regrets

When we last left off, I had finally found what I hoped (what I still hope) was the actual answer to my debilitating back pain and had a revision surgery performed (specifically, a posterior lumbar fusion and laminectomy w/ screws and rods to revise to a prior anterior lumbar fusion w/ cages).

• Post-Op Pain, Medication Anxiety

Having been on pain medications for some time and having a tendency towards becoming adjusted to medications quickly, I'll readily admit the first days were torture.  It is harder to control pain when you've already been on pretty high levels of medication and while the press-for-more-meds pump helped a bit, it was rough going.  I had to remind myself repeatedly that the post-op period ends and appreciated my doctor's simple reassurance that "It WILL work" (I'd sworn I was going to scream "YOU did this to me!" when he came in, but he's simply too nice and truly has a stellar bedside manner).

I stayed on the same level of medication for a while, despite being a bit anxious to start decreasing the dosages.  My surgeon, my GP (who continued to write my pain med prescriptions both because he was local and because consistency is key in pain-land), and the clinical pharmacist (who served as an intermediary and really handled the medication management) all told me to give it time before I started to drop my dosages.  I asked about it more than once and they urged me to wait till a couple months had passed and then wait again as I started physical therapy.  They were right.  I couldn't have handled the next part earlier in my recovery.

• A Quick Aside on Pain Medication, the Body, & the Brain 

There are a LOT of traps with serious pain medication, but I'll reiterate that I don't regret the path I took and believe pain medicine helped me survive years of terrible pain by making it awful-but-survivable instead of completely paralyzing (note: I did need to go on disability, a topic for another day...).  I've already mentioned that my body quickly adjusts to new meds and new dosages meaning medication becomes decreasingly effective.

I don't like the word "addicted" as a descriptor for someone using pain medications as medically indicated, but "dependent" is pretty accurate.  Missing a dose of the longer-acting pills leads to pretty awful things...shakes, sweats, chills, and the incessant feeling of ants crawling inside your skin.  I'll get to the process of withdrawal in the next bullet-point, but suffice it to say a sudden stop is not only difficult but dangerous.

One more point on the "science" of pain medications.  I can't tell you the detailed reasons, but pain medications can actually cause pain....a lovely cycle, no?  When you go off pain medicine, you may face increased pain because of the changes in your brain chemistry and it is tough to know what is "real" and what isn't (the folks on House talked about this once and I believe House said something like "The torture is the cure.").

• Withdrawal

It would diminish the reality of this stage to make that heading anything other than the single word.  

Eventually, my team and I agreed it was time to start decreasing my medications.  This was done with a LOT of supervision and advice.  It was done slowly and actually slowed down more than planned because of how difficult the process was for me.  We started with the long-acting meds (oxycontin) and would adjust the dose down every few weeks....at first trying to decrease both AM and PM doses at once and then moving to doing them separately to ease the change.  It wasn't a matter of weeks, it was months.  

There are images we see in the media of withdrawal and dependence.  We see the recreational addict sweating and hallucinating through a complete, sudden withdrawal.  We might see a "Very Special Episode" where grandpa is confronted for using his hip surgery meds for too long and agrees to stop and all is well.  It is a bit different when you decrease properly used, long-term pain meds under medical direction. 

Truthfully, it was a pretty horrendous process.  I suffered night sweats, chills, nausea, and the aforementioned feeling of bugs crawling inside my skin (think severe pins-and-needles that last for hours and hit each limb in turn).  During one of the early stages, I called for help and wound up in line at CVS visibly shaking and feeling like an addict (again, I WAS dependent, but addiction implies a different mental state).  They added in a medication to help with the withdrawal (clonidine), though ironically I had to taper off the withdrawal meds to avoid withdrawal from them...

Simply put, withdrawal sucks.  I got through it by focusing on the goal, including proving to everyone (myself included) that I truly intended the medications as a temporary solution.  I also gave myself permission to wallow at times...sometimes you just need to allow yourself to feel sorry for your lot.  You can't stay there forever, but it is okay to "visit."  If I needed a treat to make myself feel better, I tried to allow it guilt-free.  And I may have had more than my usual share of red wine both as a mental treat and (honestly) to help my muscles relax (note: I'm not telling anyone to drink on meds, but I'd be lying if I said I didn't.  Knowing how the meds effect you on their own and paying careful attention to the impact of alcohol is critical if you choose to drink.  I'd also recommend not using formulas that include acetaminophen if you consume alcohol because it does bad things to your insides.).

• Withdrawal, Part Two

I celebrated the day I was finally off all the long-acting meds and probably announced it way too often.  But, despite the fact that I was still coping with the withdrawal symptoms, I was proud (and rightly so!).  I did continue to use the shorter-acting pain meds (oxycodone) as needed (typically twice a day, though I was permitted up to three per day by the label) for about a month and then we started in on reducing those.  Week-by-week, I went to 1.5 pills, 1 pill, .5 pill, and then none.  

This second stage of medicine reduction was been a bit different.  The physical symptoms did show up, but much less than they did at the height of the prior stage.  What I found hard here was the mental side -- I needed to face some of the pain head-on.  I'd gotten used to knowing I had a weapon when the pain got too high and I only wielded it (i.e. took the oxycodone) when I felt overwhelmed.  On the dreaded pain scale from 1-10, it was usually over a 7 before I'd "give in."  While the meds never erased the pain, they eased it.  I had to, over the weeks of this stage, pull on inner strength as much as I ever had in the years prior (ok, I also wallowed and indulged cravings a bit).

• Me, Drug Free 

I'm writing this a few several weeks before I plan to post it, but the day I'm starting this post is the third day I've been pain-med free in years (Tuesday on the week I went to 0 pills).  I've been urged to use a much lighter prescription medicine for the worst of days, in part because my history of hives puts a lot of OTC stuff of limits...it is another mental challenge to accept the "help."  I'm still pushing hard in physical therapy and we're readying to move and that is NOT going to be easy on my body and my stubborn mind insists I do my share of the packing

The truth: I still have a lot of pain, but I NEED to believe this is "my brain on drugs" (that phrase and the image of a fried egg it provokes totally date me...)....or perhaps more accurately "my brain off drugs."  The hope, expressed and believed in by my entire medical team, is that the pain will start to fade as my brain chemistry evens out.  

Postscript to come....

(Image Credit: Sue Clark)

Pain Medication Part Two: A Long Journey

Expanding on the note to my last post...As I've considered what I want to share (I "write" posts in my head ten times before sitting before the screen), I've known that I want to be extremely honest.  Too much of the reality of chronic pain/illness is hidden away, making thousands feel utterly alone and magnifying the difficulty of our journeys.  So I'm telling it like it is/was and I'm "naming names" when it comes to meds, in part so that someone searching for understanding might stumble on this blog and not just find ads for addiction treatment centers or forums populated by recreational drug users.

There's risk here.  Hopefully, I'm a job-seeker one day and I know that even anonymous blogs are traceable.  But, if they dug enough, then they'd be able to find enough of my story some other way and I'd rather it come from my voice than from a printout of my CVS bills.  Also, and this is key, I DID NOTHING WRONG....and I want others to be able to say the same thing loud and proud.  We are fighters, we are survivors (even if it isn't a life-threatening illness that we battled).  The only way to really fight the stigma associated with certain meds or with spending time on disability is to tell our tales.  

• This Is Your Blogger On (Medically Indicated) Drugs

It was my general practitioner who saw me, really saw me, at my worst and offered help.  I'd used short-acting pain meds on an as-needed basis for a long time for my endometriosis (Demerol, Percocet)  and I'd used some longer acting formulas after my first back surgery.  But Dr. B proposed something I'd never even imagined -- methadone.  Like many, I'd only heard of methadone as an addiction treatment, but it is also a strong pain medication in its own right.  It also has less of an impact on the mind...less of a high so to speak...and that's why it is his first line choice for chronic pain management.  He also prescribed Percocet for more immediate relief (Percocet is oxcydone plus tylenol, I eventually asked to move to just the oxycodone because tylenol has little effect on me and it can be really harmful if taken too much....yes, it can cause even more damage than its bigger siblings).

Speaking of "high"s....I find there isn't much of a "high" from in pain meds when used for long-term pain.  Yes, I get chattier when I've had my meds, but I truly think that's simply because I feel well enough to be more me.  I never got groggy and I don't think I got euphoric, even on crazy dosages of strong meds.  Certainly, those responses can happen in short-term use, but I think it is different with long-term chronic pain management.  I may have seemed a bit more "on" when my meds kicked in, but I think that was simply the "high" of being relieved from a bit of the burden of life in pain.  It was the chance to feel more like everyone else feels naturally.  I've found many other pain patients have had similar experiences.

Also, I never got complete pain relief from pain meds.  When they "worked," they simply brought the pain levels down a few notches, often taking it from "excruciating" to "bearable."  And I truly believe my "bearable" is a pretty intense level of pain.  There's no real way to know what others feel and how they experience pain -- one of the reasons I believe that pain patients need practitioners who really listen -- but I think I have a high pain tolerance.  As PainShrink (who'll star in another post) said, it's hard to say I don't when I didn't get help for the endo until I passed out at work...

I'd spent enough of my life as a patient to know my body and how it responds to medication.  I'm a petite gal, but I typically require higher doses of medications than average in order to get a response.  At the same time, I get adjusted to medicines very fast....as a kid, I'd need a new allergy medicine each year because the old one would stop working.  It's far from an ideal combination, especially when you add in that I withdraw poorly....I'd spent a week dry-heaving after discontinuing an anti-depressant years ago and had a few nasty experiences when I'd miss even "simpler" meds like a single birth control pill (taken continuously to manage the endo pain).  And this certainly all came into play with pain meds. 

• A Long Road

Increasing my dosages was never something I took lightly.  More than once, it was my husband who told my doctors that I needed better pain relief than I was getting.  I'll need to remind myself to do some more posts on pain patients and their partners, but for now I'll say that I highly recommend having the partner be an involved partner in the medical journey.  Sometimes, I just needed another set of ears at an appointment, whether with my GP or one of the many specialists I saw.  Sometimes, I just wanted to know my now-husband had a chance to hear what the doc was saying directly and ask any questions  Other times, I needed an advocate.  It also helped ease my concerns about me looking like too much of a drug-seeker which is why I asked him to tell my doctor directly when he suggested I needed a higher number of the short-acting pills per prescription.  

In time, Dr. B started working with a clinical pharmacist who specifically worked on chronic pain medication management.  PainPharma was (and is) an amazing asset and she helped me over more than one hump.  She reminded me that we were doing everything right and that she'd be there on the other end when one day I was ready to stop the meds.  Eventually, she suggested we move away from the methadone.  After trying another medication that left me feeling very ill, we made what was mentally the most difficult move...to oxycontin.  

Oxycontin is the same medicine as oxycodone in a controlled-release formulation.  Really, it wasn't any more powerful than the other combinations I'd tried, but it carries a huge stigma and I cried when PainPharma suggested it.  She had talked me through other changes, but this one required extra reassurance.  She reminded me that she knew I took my meds for the right reason and that she wouldn't keep recommending them if she didn't believe that.  She helped me see that oxycontin is not an evil in itself even if it makes headlines and some people abuse it.  Oxycontin...yes, I'm repeating it on purpose...may be misused by many, but it is also properly used by plenty.  And (for years) that included me.

• Years of Searching in One Bullet-Point

I spent years on pain meds.  But throughout that time, I was always looking for a way out...a cure instead of a band-aid.  I saw several different doctors.  I tried spinal injections, a nerve-destroying procedure, adjustments, physical therapy, even acupuncture (a big deal for a needle-phobe!).  I rarely went more than a couple weeks without some sort of appointment.  All through this time, I knew in my bones that the first surgery hadn't worked quite right, and years later I had my proof when a discogram (a horrid procedure that essentially involved prodding your spine with needles to see when you scream...) proved the pain was coming from that same segment of spine.  Nearly four years after the first surgery, I had a second and the doc confirmed again that there was instability present that was likely the source of the pain.  

Still to come...a post-op period and then the slow (and, honestly, horrendous despite amazing support from PainPharma, Dr. B., my surgeon, and my PT) process of weaning off the meds...

(Image by .v1ctor Casale.)