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.)