Controlling Your Opioids So They Don’t Control You


Illustration by Mark Weber
Illustration by Mark Weber

Taking opioids such as hydrocodone or Oxycontin (oxycodone) for SCI/D-related neuropathic pain is like owning a humongous pit bull. With the right care and training, that big ol’ pooch is a well-behaved sweetie, more likely to lick you to death than maul you. But without the proper discipline … well … the dog may end up taking you for a walk rather than the other way around.

Many think that any opioid use will lead to addiction — just as many think pit bulls ought to be illegal since they can be dangerous. But contemporary expert opinion is that unless a person is already predisposed to addiction, even long-term use of opioids will not result in permanent physical addiction.

In fact, says Dr. Jon Arnow, a T12 incomplete para, “I would be careful with the use of the word ‘addiction.’ The majority of people who don’t have addictive personalities will not get addicted.” According to Wikipedia, someone with an addictive personality engages in the “excessive, repetitive use of pleasurable activities to cope with unmanageable internal conflict, pressure, and stress.” Compare this to someone who can’t function unless they have pain relief — they’re not interested in getting high, they just want the pain to subside so they can get about their day.

Arnow says there are distinct differences between dependence, tolerance and addiction. If you have severe chronic neuropathic pain, chances are you truly cannot function without pain medication, so of course you need it. This leads to “dependence” and it is nothing to be ashamed of, it’s just a medical fact. But our brains love opium-derived medicines so much that they will actually create pain just to get us to take more, which causes us to need increasingly larger amounts — this is tolerance. And a few of us will use these meds to avoid life, even isolating ourselves from our families.  We may doctor-shop or buy from multiple pharmacies and use the drugs to dull our emotional as well as physical pain. This could lead to addiction. If this describes you, it’s time to talk to your doctor about it. There is help available.

When abused, opioids can cut us off from everyone and everything we love. But when used properly, they can improve our quality of life, allowing us to engage more with our family and friends.

That Euphoric Feeling

Early on after her injury, Mary Lee, a T11-L1 para from California, used opioids exactly the way an addict does — she isolated, doctor-shopped and didn’t want to feel anything anymore … no physical pain and no emotional pain. She went to drug rehab, became “clean,” got on with her life, but then years later her neuropathic pain wore her down, so she started using again. But this time around, she wasn’t trying to escape her life — she just wanted to take the edge off her pain.

Her story shows the difference between the unhealthy abuse of opioids common among people with new injuries and the sometimes necessary use of them in order to function.

“Pain is pain, that’s my theory on it. Physical or emotional, it all hurts,” says Lee. “When I was first injured I was in a lot of physical and emotional pain. I’d never even seen anyone in a wheelchair before. It was 1975, I was 21 years old. Emotionally I was crushed by the whole thing and I had neuropathic pain in my right leg.” Plus, there was that early paralysis disorientation … how can she not feel her leg, but at the same time have it hurt so bad? (see below on neuropathic pain).

Lee couldn’t cope with any of it, and decided she didn’t want to feel anything at all. “It was just too much all at once,” she says. Compound this with a severe lack of role models who use wheelchairs — this was the ’70s, remember — and Lee says she fell into a dangerous cycle of drug abuse.

“I felt like I was nothing, I was broken, there was no life for me. I didn’t have a lot of good coping skills for anything that was super-challenging, so I used Valium until it changed my personality so much that I stopped using it,” says Lee. Her doctor prescribed opiate-based pain meds instead. “Dilaudid really stands out for me because that one really made things go away. My legs didn’t hurt and it also gave me that euphoric feeling — everything’s going to be OK. I fell down the rabbit hole of denial. I was convinced I was going to wake up from my dream and I was going to be fine.”

Soon, Lee began to show all the signs of drug abuse: She doctor-shopped, isolated from friends and family, and took opioids to escape the emotional trauma of sustaining an SCI. “Most of my friends didn’t know I was a drug addict who was drifting. I was emotionally addicted to the feeling of not feeling,” she says.

This went on for about a year, and then Lee reached out to her mother. Her mom helped her find a drug rehab and heavy-duty counseling. “Now that I admitted I needed help, I went in the opposite direction. I started learning how to deal with my pain — my emotional and physical pain at the same time. Once I felt strong enough I left the facility and started to go to school at Long Beach State and met other people with disabilities. That was my first encounter with other people who are like me.”

Soon Lee was hiking, water skiing, downhill skiing and even racing. “When I was doing sports my leg didn’t hurt. Stretching my leg helped a lot, biofeedback … it was the art of distraction that helped me for a very long time.”

So far this story appears to be a classic case study of a drug addict in recovery. But there are a few twists. By the ’90s, Lee’s tolerance for the neuropathic pain in her leg was wearing thin, so she began taking a hydrocodone product. “I didn’t like taking it at all because I was still active as an athlete and felt it compromised my performance,” she says. So she took them sparingly, as few as possible, and when she discovered she was a good candidate for DREZ surgery (see glossary below), she took a chance and went under the knife in 2001.

“My life went from black-and-white to color because I didn’t realize how much the pain dimmed the light of life,” says Lee. “I don’t think I understood what real joy was until I’d been out of the pain.” She still has a script for hydrocodone for neuropathic pain in her back, but says she may only take one every year or so.

Lee’s story is common among people with SCI — after the initial trauma, many find themselves abusing prescription opiate-based meds. And it’s also typical for most to come out of their drug-fueled haze ready to engage their new reality.

What’s also typical of Lee’s story is that, later in life when she used opioids again, she was able to do so safely. When she abused them, she isolated herself from her family and friends. When she used them for pain relief, they allowed her to remain engaged, active. Since her surgery in 2001, she hardly ever takes opioids at all — something no addict would be able to pull off.

The Tolerance Dance

What is addiction? “Obsessive behavior to obtain the drug or too much time spent thinking about procurement, getting it when you’re not in pain, using it to self-medicate for emotional problems, or engaging in risky behavior to obtain the drug,” says Arnow, who was injured in 2002. “That is what addiction is. And again, the majority of people who don’t have addictive personalities will not get addicted.” This may even include those who, like Lee, go through a sustained period of drug abuse. Instead of addiction, usually what people are dealing with is “tolerance.”

“Everyone who takes opioids will develop tolerance,” says Arnow, a medical doctor who specializes in ear, nose and throat. “It is a physiological imperative that will occur.” Our brain likes the feeling so much that it will actually create the sensation of pain so that we give it more. And yet, the pain is real and the medicine is needed. People with neuropathic pain depend on opioids to stay active and involved, despite the side-effects of dependence and tolerance, and this is just the way it is for many.

“It’s very hard for the newly-injured,” says Arnow, who lives in Reno, Nev. “Here you are, between 18 and 30, and here comes neuropathic pain!? Let’s say there’s a guy on the CareCure forum, he’s taking methadone, and so on, and still has the pain, none of that works, he’s still searching. But you can’t get to ‘no pain.’ That’s a hard thing for a person with a new injury to hear, but they have to learn to deal with it.”

Arnow understands — he lives with chronic pain himself. “I struggled very hard the first few years trying to eliminate it. Eastern medicine, acupuncture, blah blah blah, trying to eradicate something that’s just not going to go away. It takes years to accept that.”

Arnow suggests handling the tolerance cycle of opioids by laying off of them for a while. “I will take a drug holiday, which sucks because it’s miserable, but it allows our opiate receptors to return closer to normal so the lower dosing will block pain. And I still struggle.”

Jack Shepherd agrees with much of what Arnow says. Injured at the T10 level while performing a skiing stunt almost 30 years ago, Shepherd is dependent on opioids to control his neuropathic pain and works closely with his primary care doctor to manage his meds. He’s sensitive about how much he needs in order to function. “I’ll take a max of 15 mg oxycodone a day, 5 mg every four to six hours, and my doctor says he has people who take five to 10 times that,” says Shepherd. “I purposefully never increase my dosage. I’ll take it for a while then stop for a month to let my brain reset.  Otherwise I need more and more and more.”

The cycle is frustrating. “At first the meds help so much that it’s amazing, but then after a while the brain says, ‘I want more of this drug!’ And then creates more of the pain that I’ve had in the first place just to get that drug. I’ve been doing that dance for a long time.”

Is Shepherd a drug addict because he depends upon oxycodone to get through his day? Absolutely not, but he worries about becoming one. “My thought is if you’re honest with your physician and letting him know what you’re taking and sharing your concerns, you’re fine,” he says. “It’s when you take more than you’re supposed to and going off the rails that you may be in trouble. That’s been my experience and my family’s experience, too. I don’t want to become a drug addict, I’m really concerned about that.”

Control is the Key

HealthCentral has a great article on opioids by Karen Lee Richards that includes a chart highlighting the differences between addiction and tolerance. Some of these include:

• Addicts take drugs to get high and avoid life, while non-addicts with chronic pain take drugs to function normally and get on with life.

• Addicts isolate themselves and become lost to their families, but when non-addicts with chronic pain get adequate relief, they become more active members of their families.

• Addicts are unable to interact appropriately with society, and non-addicts with chronic pain who get adequate relief interact and make positive contributions to society.

• The life of an addict is a continuous downward spiral, whereas a non-addict with chronic pain who gets adequate relief can find their life progresses in a positive, upward direction.

If you are using opioids for pain relief and find yourself identifying more with the addicts who isolate themselves, perhaps you want to do what Lee did all those years ago and seek out help. If, on the other hand, you’re concerned about the amounts of opioids you need to function, but identify more with the non-addicts, then relax — you’re not a drug addict. But you may wish to speak with your physician about “drug holidays” as Arnow and Shepherd do, or find ways to distract yourself as Lee did.

Your life does not have to be controlled by your need for pain medication, even if you have a very high tolerance and even if you are helplessly dependent. With coping skills and a strategy, you can keep your drug regimen on a tight leash.

Mary Lee and Jack Shepherd are pseudonyms to protect the privacy of people who generously shared their sensitive experiences with opioids.

Resources


• “Opioids: Addiction vs. Dependence,” HealthCentral: www.healthcentral.com/chronic-pain/coping-279488-5.html
• Narcotics Anonymous: www.na.org
• “The Pain Falls Mainly on the Brain,” NEW MOBILITY: www.newmobility.com/2006/08/the-pain-falls-mainly-on-the-brain/
• “Strategies for Managing Pain,” NEW MOBILITY: www.newmobility.com/2013/07/strategies-for-managing-disability-related-pain/


What is Neuropathic Pain?

By Tim Gilmer
Neuropathic (neurogenic) pain results from injury to the spinal cord or peripheral nerves. Unlike acute pain, which accompanies an injury or current inflammation, neuropathic pain sets in after an injury has healed. It is caused by abnormal communication between damaged nerves and the brain, and can be bothersome, moderate or severe, and takes many different forms.

This type of pain is difficult to treat because it does not behave like normal pain. The pain felt can be “magnified” — out of proportion to the stimulus — or it can even result from an unknown or nonexistent stimulus (like “phantom pain”) because the damaged central nervous system itself is involved in generating the pain.

Neuropathic pain is often experienced as a burning, prickling or tingling sensation below the level of injury (for instance, all over the legs), or it can be a stabbing sensation in a specific area, sometimes near the intersection of where sensation gives way to numbness. It may also be experienced as “referred pain” — seemingly being transferred from one area that lacks sensation (e.g., a decubitis or infected area) to another area where there is no obvious problem.

Pain medicine can help, but sometimes it can only take the edge off the pain or temporarily provide relief. Often this is all that is needed. Each individual experiences neuropathic pain in a way that is unique to the person or injury. Sometimes a combination of treatments may be necessary, always under the care of a physician.

It is important to understand that complete relief may not come with pain medications, so special caution must be exercised in taking more medicine, upping the strength of a prescription, or mixing it with alcohol intake in order to eradicate the pain. This can be a dangerous pathway to abuse and addiction, can result in damage to your health, or in extreme cases, death, especially when using the most powerful of painkillers.


Opioid Types

Weak Opioids
Weak opioids are used to treat mild to moderate pain. Codeine and tramadol (Ultram, Ultracet) are weak opioids and are about twice as potent as non-opioids (acetaminophen, aspirin, ibuprofen, etc.). They work well for pain in muscles and joints, such as sprains and osteoarthritis.

Strong Opioids
Strong opioids are used for severe pain associated with trauma, major surgery and cancer. Morphine — the gold standard of opioids — is one of the oldest and most versatile of strong opioids. It can be given by mouth, under the tongue, intravenously, by injection and even rectally. Quick-acting oral preparations help relieve breakthrough cancer pain in as little as 15 minutes. Long-acting preparations, such as MS Contin and Duramorph, help provide continuous relief from severe pain from cancer and other serious conditions.

Synthetic Strong Opioids
Synthetic strong opioids include hydromorphone (Dilaudid) and fentanyl (Duragesic). Hydromorphone can be given orally or by injection for quick relief of acute pain. Fentanyl is worn as a transdermal patch for protracted pain relief. In recent years, methadone (Dolophine, Methadose) has been used more often for chronic pain because people do not require increased doses over time (unlike with other strong opioids).

Mixed Opioids
Low-dose, strong opioids are commonly combined with acetaminophen, ibuprofen or aspirin, to treat moderate pain. Hydrocodone (Vicodin, Lortab, Norco) and oxycodone* (Percocet, Percodan, Combunox) are examples of these mixed opioids.

*Oxycontin is oxycodone that is formulated as a slow-release (12 hour) pain medicine. It is a brand name drug and is not a mixed opioid, since it is not combined with a non-opioid. It is usually prescribed when something stronger than a mixed opioid is needed.
www.livestrong.com


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Lucian
Lucian
9 years ago

That was a fantastic article. Thanks!

J.B. Abajian
9 years ago

I suggest straight, (non-toxic), codeine sulfate to eliminate toxic acetaminophen, (Tylenol), found in most pain pills. Just request more, to make up for codeine’s weakness. For me, prescriptions of 180 mg total daily amount of Codeine and 12 mg daily of Cannabidiol has replaced strong and toxic meds like Norco and Tylenol 4. It’s always a balancing act. Too much pain relief gives a false sense of ability which can lead to over-doing, which can cause long lasting discomfort, or potential damage, depending on the circumstances. “Whatever doesn’t kill you, only makes you stronger”, is a load of crap. There are plenty of choices in movement and weight bearing that will not kill you, but can certainly F you up. Don’t be afraid of pain, and don’t be afraid to use painkillers responsibly