Lessons I’ve Learned from Taking Prescription Painkillers (Part 2)

**Note- these are my personal experiences and should not be taken as medical advice. All prescription medications that I refer to are drugs that I was prescribed by a doctor for orthopedic and neuropathic knee pain following two different surgeries within a three-year period. **

Okay, so you’ve been talked into the idea that it might be worthwhile to take medication for the illness or pain that you are experiencing. What drug will you take? The guiding factors will likely be: your health diagnosis and your doctor’s recommendation.

I think it is important to mention the weaknesses of each of these influences. Within the framework of Western medicine, diagnosis rules treatment decisions. For a multitude of reasons, you cannot get treatment until there is a name or a label for the constellation of symptoms you are experiencing. There seems to be an unquestioned assumption that this is necessary and also immutable. It might be worth thinking about the idea that the majority of this pressure may come from the insurance reimbursement system currently in place. The problem here is that as a patient it often feels like a sort of stifling procrustean fundamentalism. In other words, the process of diagnosis fits you and your symptoms into the box of an easily accessible, trendy, and often fast-acting treatment instead of fitting a treatment to you as an individual.

The idea of placing a diagnosis/label on your symptoms also may make it harder to treat or view flexibly as Dr. Seth Oberst describes here: Labeling, Experience, and Self-Regulation.

One doctor, speaking about brain disorders, says this, “All patients progress differently, and there is a spectrum of disorders. We cannot therefore say that all patients need x medication for x condition.”¹ When was the last time that you were treated like an individual when you went to the doctor and not just, “a diagnosis?” I hate to be cynical, but I can’t think of a single time that I did not receive a diagnosis-first, patient-second recommendation or treatment plan from a doctor. Please let me know if I am wrong about this.

Not only may the diagnosis that you are given be problematic, but your doctor’s recommendation may be problematic as well (or at least biased). For a brief discussion on this, see: Lessons from Rx Painkillers Part 1.

So, if you must operate (ha!) under this model, how do you negotiate it? Well, if your experience is anything like mine (and I hope that some day I can help more people so it isn’t!) there will be A LOT of trial and error. Even though I am not thrilled with the diagnostic framework as it stands, I will save that battle for another day and use the diagnostic labels that I was given in order to better organize my decision making process for taking these drugs.

What follows was my journey of rehabilitating my knee and use of prescription painkillers along the way:

0-10 months post-ACL reconstructive surgery

• Diagnosis: acute surgery recovery, patellar tendinitis/tendinosis, depression.
• Medications: Hydrocodone, Sertraline

I was experiencing intense post-surgical pain that did not ease up and so was on a course of Hydrocodone as well as over the counter (OTC) pain killers and Non-Steroidal Anti Inflammatory drugs (NSAIDs). For a review on the difference between general painkillers and NSAIDS, see: Advil vs. Tylenol. I experienced some pain relief with the hydrocodone, but also had to put up with the drowsiness and nausea that I experienced from taking it.

I was going to physical therapy full time and also tried Autologous Blood Injection (ABI) (similar to Platelet Rich Plasma (PRP)) treatment. These treatments are becoming more common for tendinopathy and also knee cartilage degeneration.² An attractive feature of these treatments is that you are not introducing foreign chemicals into your body, but reintroducing your body’s own blood or platelets in order to stimulate a healing effect.

I think it also noteworthy to mention that I took Sertraline (classified as a Selective-serotonin reuptake inhibitor (SSRI)) for the depression that I was experiencing from dealing with the chronic pain and injury. Sertraline also has been shown to have anti-inflammatory effects (kind of a bonus for me, right?)³

10-22 months post-ACL reconstructive surgery

• Diagnosis: Patellofemoral Pain Syndrome (PFPS), synovitis
• Medications: Naproxen, Diclofenac, Lidocaine

During this period I was going to physical therapy and seeing a new doctor who was prescribing new medications: Naproxen, Diclofenac, Lidocaine patches. I showed some signs of improvement (i.e., reduced inflammation) with the Naproxen and a little bit from the Diclofenac (topical Voltaren gel). However, my knee seemed to respond most to load restriction, consistent with the treatment paradigm described by Dr. Scott Dye: The Pathophysiology of Patellofemoral Pain. The Lidocaine patches were a bust for me as they only numbed my skin superficially and didn’t touch the deep joint pain I was experiencing.

0-5 months post-synovectomy/chondroplasty surgery

• Diagnosis: acute surgery recovery, synovitis, Complex Regional Pain Syndrome (CRPS)
• Medications: Piroxicam

During this time period, I was trying to heal from the acute arthroscopic surgery and treat the pain and inflammation that I was experiencing. My reaction to this surgery was not good and I developed what seemed at the time to be the recurrence of synovitis- experiencing pain and inflammation with any weight bearing. The Piroxicam did not allow me to weight bear on my leg, but maybe kept my inflammation from getting worse? It was hard to tell if I experienced any benefit from this drug.

6-12 months post-synovectomy/chondroplasty surgery

• Diagnosis: synovitis, PFPS, CRPS
• Medications: Tramadol, Pregabalin, Duloxetine

At this point it was clear that I was having a very negative reaction to surgery with severe continuing pain and inflammation in my knee. I still was using crutches because I could not weight bear on my leg without exacerbating these symptoms. In my mind, it was time for ANY treatment that held promise for possibly reducing the pain and inflammation. Enter my next drug cocktail: Tramadol, Pregabalin, and Duloxetine. Why these three drugs?

I was using Tramadol for short-term pain relief (it is an opioid, but some claim a less addictive opiate). For me, as well as other patients, a downside to this drug was having some pretty serious and troubling withdrawal symptoms from it. As stated succinctly: “Some people swear that this is the toughest drug that they have ever withdrawn from.”⁴

Pregabalin and Duloxetine act on the central and peripheral nervous systems (Pregabalin is classified as an anti-convulsant and Duloxetine is classified as a serotonin-norepinephrine reuptake inhibitor (SNRI)). I was taking these drugs for the chronic pain that I was experiencing with the idea that most (all?) of it at this point was neuropathic. After all of the drug trials that I have/had tried, the combination of these three drugs (in addition to a long period of very strict non-weight bearing) were truly what helped me turn the corner on healing my knee.

A Happy Ending…of Drug Taking

Luckily, I have been able to see progress and healing with my knee to the point that I am currently prescription drug-free! I am so thankful for this and I sincerely hope that these experiences will enable me to help others navigate their own medication needs for successful rehabilitation and pain management.

**Note- these are my personal experiences and should not be taken as medical advice. All prescription medications that I refer to are drugs that I was prescribed by a doctor for orthopedic and neuropathic knee pain following two different surgeries within a three-year period. **

References

1. Doidge, N. (2015). The Brain’s Way of Healing: Remarkable Discoveries and Recoveries from Frontiers of Neuroplasticity. New York: Penguin Books.
2. Colberg, R. E., and Mautner, K. (2013): http://lermagazine.com/article/platelet-rich-plasma-an-option-for-tendinopathy
3. Sutcigil, et al. (2015): http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2248234/
4. http://mentalhealthdaily.com/2014/06/25/tramadol-ultram-withdrawal-symptoms-duration/

Lessons I’ve Learned from Taking Prescription Painkillers (Part 1)

**Note- these are my personal experiences and should not be taken as medical advice. All prescription medications that I refer to are drugs that I was prescribed by a doctor for orthopedic and neuropathic knee pain following two different surgeries within a three-year period. **

My Personal Drug Story

Isn’t it funny how our society polarizes drugs into “good” and “bad” categories as if they possess purely benevolent or malicious intentions? I remember taking D.A.R.E. (Drug Abuse Resistance Education) classes when I was in middle school and we learned about all of the illegal drugs not to take: heroin, marijuana, methamphetamine, MDMA…I knew that these illegal drugs were bad (sarcasm, sarcasm, cynicism, cynicism…) but I was also raised in a family that eschewed the use of drugs in almost all cases. I don’t think I took cough syrup or cold medicine until I was in my late 20’s. Even then, I felt guilty every time I did!

So, I learned at an early age, drugs = bad. This brief context of my socialization surrounding drugs, will hopefully set the stage for the following account of my experiments with a long list of analgesic (i.e., pain relieving) drugs to treat knee pain. I do not view drug taking (no matter the legality or purported “safety” of the drug) lightly. I tried all of these different drugs as a very serious attempt to alleviate pain and, believe me, drugs were not the first thing that I tried! That being said, I hope to also communicate some of my newfound appreciation for drugs when used as one tool in a broader treatment plan and not a be-all-end-all-cure-for-what-ails-you.

Keeping in mind that before three years ago, I rarely used drugs: I’d take Advil or cough medicine maybe twice a year for a bad headache or cold. Since the injury to my knee three years ago, I’ve tried all of the following prescription drugs for pain relief or anti-inflammatory properties and some for months at a time! Seems crazy, right?!: Diclofenac (topical gel) (Brand Name: Voltaren), Duloxetine (Brand Name: Cymbalta, among others), Hydrocodone, Lidocaine (topical patches) (aka: xylocaine or lignocaine), Naproxen (Brand Names: Aleve, Naprosyn, among others), Piroxicam (Brand Name: Feldene, among others), Pregabalin (Brand Name: Lyrica, among others), Sertraline (Brand Name: Zoloft, among others), Tramadol (Brand Name: Ultram, among others).

Top 5 Lessons I’ve Learned from Taking Prescription Painkillers:

1-Drugs do not have just one effect (and thus, no drug is “safe”)

I don’t believe that any drug is “safe,” though some are clearly worse than others. All drugs have “side effects,” or additional effects to the desired one. The most common side effects that I experienced were: head aches, insomnia/nightmares/sleep disturbances, foggy headedness/inability to concentrate, constipation, and skin issues (irritation, rashes). It is common to experience gastrointestinal (GI) symptoms from ingested drugs and skin irritation from topical drugs¹. For some of these drugs, the list of side effects is probably scarier than what they claim to treat!

*Please note, though I believe that drugs are not, “Safe,” sometimes drug taking is a calculated risk that makes sense (see #5)*

2- Doctors (MDs) have a limited understanding of the drugs that they prescribe

First of all, let’s get this elephant out in the open right away: randomized controlled trials (RCTs) are only as good as the sample size that they include, which is….drumroll please…predominately Caucasian males. So, in a system that idolizes the RCT for medication use and effectiveness, this should be a HUGE red flag if you are NOT a Caucasian male. For a good discussion of this issue as it pertains to women specifically, see: Alyson McGregor TED Talk.

This just reinforces the idea that each person reacts differently to drugs and is one reason why people get frustrated: clinical symptoms and disease presentation are often very different from the information gathered in RCTs. Also, there is still much we don’t know or that hasn’t been studied. But, that being said, this great unknown is also part of the hope that seems to buoy you as a patient, who has not experienced relief: maybe there is a drug (or something) that I haven’t tried that can help me!

Furthermore, doctors are human and so their recommendations are based on many factors OTHER THAN the patient’s well-being (e.g., personal preferences/biases, drug company lobbies, political pressures, reimbursement rules, bias against herbal/alternative remedies, bias towards RCT knowledge and away from experiential knowledge, fear about litigation, ignorance of alternative effective treatments, pressure to prescribe, etc.). Not all doctors are up to date on their knowledge of the biology of pain and effective approaches to treating pain (even those who claim to be pain “specialists”!)².

3- Drug taking behavior is NOT rational

When you are in pain that is severe in magnitude or duration, the mindset is often, “I will take (or do) anything to get out of pain.” This includes swallowing whatever pill the newest specialist or doctor prescribes no matter how long the side effect list is or how much it will cost after your insurance pays their portion. The coercion and seduction of a pill, a drug, a “silver-bullet” is very strong in itself, but becomes near impossible to resist when you are experiencing the raw desperation of sustained pain (i.e., chronic pain states: Making A Difference in Chronic Pain).

Drug taking can be as much about fear of symptoms as prevention of symptoms. It is a tricky psychological situation when you are in the midst of experiencing raw pain. Any pain you already, “know” is better than a feared, “unknown,” pain. Maybe, this is our inherent negativity bias speaking: I know I can put up with what I’ve already been able to tolerate, but not if it got worse…

At one point, I was experimenting with different doses of Tylenol, Advil, and Tramadol to help with my bouts of intermittent nerve pain. I finally settled on taking one Advil in the morning and one Tramadol and two Tylenol at night to help me sleep. The only reasoning that I had for this particular number of pills, combination of drugs, and timing is that I had what I thought was a, “better” day and night of sleep one day that I did this so this became my routine. I didn’t want to change it for fear of making my pain worse, and indeed I continued this regimen for the better part of three months! I won’t pretend that there was much logic to these drug taking decisions of mine.

4- It is often hard to tell whether a drug is helping

This was especially true when I was taking multiple medications concurrently (should be obvious, I know). But, even without that complication, it is often difficult to assess if a drug is helping. There are so many factors that play into one’s experience of pain or any other symptom that is the target of a drug: strength of stimulus, sensitization of nervous system, context or environment of stimulus, diet, exercise, sleep, perceived self-efficacy to cope, perceived social support, work/disability/compensation issues, comorbidities with psychological illness (e.g., depression, anxiety), etc.

It is almost impossible to be a good scientist when it comes to yourself.

5- Drugs are useful in treating pain (…in some cases)

Complete avoidance of drugs is just as dangerous a position as over-reliance on drugs. There is some evidence that appropriate use of analgesics post-surgically or even prophylactically can potentially prevent the development of chronic pain³. As the author of this study notes, “…the one factor that’s most often been shown to predict chronic pain is pain itself — pain predicts pain. At the present time we don’t know whether acute pain causes chronic pain, or if acute pain is simply correlated with long-term pain, and this is really important, because if it is causal, aggressively managing acute post-surgical pain may reduce the risk that it becomes chronic.”³. Once you’ve had pain for a while, you’re brain gets sensitized, and it’s harder to get rid of (your brain learns how to be in pain)⁴.

Drugs should be used in certain situations. I repeat: drugs were helpful to me. Despite all that I’ve written here about the negatives of drug treatment for pain, I do believe a few of them served a key place in helping with my recovery. However, they were only one component to many that it took to help me get on the path to recovery. Over-reliance on drugs is just as dangerous as under-reliance.

Just because you have tried a drug for your pain, doesn’t mean you have tried the right drug. Now, I know I just spent a lot of time talking you out of taking drugs, but let me be clear that my main objection is that these drugs are not necessarily prescribed intelligently and there is much misinformation out there. For example, the orthopedist who gave me the diagnosis of CRPS would not prescribe me a neuropathic pain drug. CRPS and other neuropathic conditions can respond to certain drugs (neuropathic drugs) and the drugs that I was asking for were the ones that research trials supported using as first line treatments⁵.

There are many different drugs designed to treat pain and there are different types of pain. This topic is a Pandora’s box of information, but suffice it to say that finding an effective treatment for your pain probably depends on if it is orthopedic/structurally related, neuropathic, intermittent/constant…you get the idea. Pain is not just pain.

So, that begs the question: when are drugs necessary? I am going to harken back to a psychology definition that I tend to like: To answer the question of whether behavior falls into the realm of psychopathology (i.e., mental illness), you must answer the next set of questions: Do the behaviors negatively impact your quality of life to a great degree? Do these behaviors/thoughts negatively affect your ability to do your job or fulfill your responsibilities? Likewise, do the problems that you are experiencing (e.g., pain) impact your life to this great of a degree and have you tried safer alternatives? If the answers to these questions are: YES, then taking drugs might make sense. Ultimately, this was the decision that I came to for myself.

I hope that my experiences as someone suffering from chronic pain as well as a student within the healthcare field may help you or someone that you know to at least be mindful of the decisions that you are making regarding taking drugs (mostly applicable to analgesics). Also, check out PART 2 where I discuss the specific medications that I tried and what I personally experienced with each.

**Note- these are my personal experiences and should not be taken as medical advice. All prescription medications that I refer to are drugs that I was prescribed by a doctor for orthopedic and neuropathic knee pain following two different surgeries within a three-year period. **

References

1. Ratini, M. (2014): http://www.webmd.com/a-to-z-guides/drug-side-effects-explained
2. Moseley, G.L., Butler, D.S., Beames, T.B., and Giles, T.J. (2012). The graded motor imagery handbook. Adelaide, Australia: NoiGroup Publications.
3. Katz, J. (2016): http://www.bodyinmind.org/managing-pain-after-surgery/
4. Butler, D.S. & Moseley, G. L. (2003). Explain pain. Adelaide, Australia: Noigroup Publications.
5. Finnerup, N.B., et al. (2015). Pharmacotherapy for neuropathic pain in adults: a systematic review and meta-analysis. Lancet Neurology, 14 (2), pgs. 162-173.