Opiates for Fibromyalgia and Chronic Fatigue Syndrome

What You Need to Know About Narcotics

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People with fibromyalgia (FMS) and chronic fatigue syndrome (ME/CFS) can have dozens of symptoms, including severe pain that's treatment resistant. It often takes a combination of several medications to make us feel substantially better. Because each medication carries its own risk, and those risks can increase when taken with other drugs, it pays to know your medications well.

Opiate drugs, also known as opioids or narcotics, are designed to treat pain. They're often prescribed for chronic pain conditions, including FMS and ME/CFS.

Opiates work by mimicking a pain-relieving chemical your body makes naturally, called an opioid peptide. Like their natural counterparts, opiate drugs bind to specific receptors in your brain and spinal cord and activate your pain-relief system.

Common Opiates

Several opiates have been on the market for a long time, are generally inexpensive, and are available in generic form. Common opiates include:

Additionally, some commonly prescribed opiates are combination drugs that also include acetaminophen, which is in Tylenol and many other over-the-counter medications. They include:

  • Percocet (oxycodone/acetaminophen)
  • Ultracet (tramadol/acetaminophen)
  • Vicodin (hydrocodone/acetaminophen)

If you're taking a combination drug, you should make sure to learn the risks of both components. 

How Effective are Opiates?

Against the unique pain-types of FMS, the medical community generally believes that opiates aren't terribly effective. Most of the research backs that up. However, a lot of people with FMS say they do get considerably relief from these drugs.

We don't have research on opiates for the pain of ME/CFS. However, the disease's two identified pain types are hyperalgesia (pain amplification) and allodynia (pain from normally non-painful stimuli), which are both part of FMS, and we have a growing body of evidence there.

And the evidence isn't favorable. A study published in Cochrane Database of Systematic Reviews failed to find any published, high-quality trials of oxycodone for fibromyalgia or non-diabetic neuropathic pain.

Clinical Journal of Pain in 2015 published a study of long-term opioid treatment in FMS found that people using opiates showed less improvement in symptoms than those taking other medications. Researchers stated there was little support for long-term use of this drug in FMS.

A Pain Research and Treatment study states:

"We have no evidence that [opioids] improved status beyond standard care and [they] may even have contributed to a less favorable outcome."

When you ask people with these conditions about opiates, though, you get a different story. A lot of them say their pain levels are too high to function without these drugs. A lot of doctors do prescribe them, in spite of the negative evidence.

In fact, an 11-year study ending in 2010 showed that the opiate rate in FMS had risen from 40 percent to 46 percent. Other studies also note an upswing in the use of opiates for treating long-term pain.

So what's behind this disagreement? We don't have research ferreting out why some people with FMS think opioids are more effective than research shows, but some possible reasons are:

  • The placebo effect: It's a well-documented phenomenon—people's belief that something will work can actually lead to improvements that the drug or other treatment isn't responsible for.
  • Overlapping pain conditions: FMS is known to overlap with numerous other conditions, and it may be that people who get relief from opiates are seeing a reduction in pain from something else, which also helps quiet FMS pain.

Whatever the reason(s), the consistent "they don't work" message from the medical community, along with ever-increasing regulations and oversight of opiate use, have led to a lot of anger and resentment in the patient community—especially from those who've been refused a drug they say helps them function.

Opiate Risks: Overdose, Addiction, Victimization

Opiates come with multiple risks, some medical, some not.

Overdose can be fatal. It's sometimes the result of people taking an extra dose because the first one didn't relieve their pain satisfactorily. The cognitive dysfunction (fibro fog) associated with FMS and ME/CFS may also make it hard for you to keep track of when you took medication and lead you to take more too soon.

Drug tolerance also contributes to your overdose risk. Many people who take opiates long term develop a tolerance, meaning the drug is not as effective for them as it once was. However, just because it takes more for you to feel the effect doesn't mean your body can actually handle more. It's important to always take opiates as directed.

Symptoms of opiate overdose include:

  • Depressed level of consciousness (e.g., confusion, drowsiness, coma)
  • Slow and/or shallow breathing
  • Slow heart rate
  • Convulsions
  • Dizziness and/or fainting
  • Nausea
  • Vomiting
  • Constricted pupils
  • Cold, clammy skin

If you suspect you or someone else has overdosed on opiates, it's important to get emergency medical help right away.

Addiction is also a risk with opiates. This has gotten a lot of attention from law enforcement and media in recent years, which has made some doctors reluctant to prescribe opiates and makes some people worry about taking them.

However, some studies show that the risk of addiction is lower than commonly thought, and the greatest risk appears to be in people with a history of drug abuse and addiction.

To address doctors' fears over prescribing potentially addictive drugs, the American Pain Society in 2009 published this paper: Guideline for the Use of Chronic Opioid Therapy in Chronic Noncancer Pain

With opiate abuse, overdose, and death rising across the country, the CDC in 2016 issued Guidelines for Prescribing Opioids for Chronic Pain to address the problems.

It's also possible that, over time, opiates may heighten pain. Some research suggests that opioid medications may lead to an increased sensitivity of some types of pain, similar to the way FMS amplifies pain signals. This effect is called opioid-induced hyperalgesia.

Because some people take opiates recreationally, possessing these drugs can make you the target of thieves. The more people who are aware that you possess these drugs, the more you may be at risk for victimization. You may want to use a drug safe, avoid throwing away pill bottles in garbage that's accessible by public, and, if you get refills by mail, replace your mailbox with a locking one.

Opiate Side Effects & Interactions

You can have side effects to opiates (or other drugs) even while taking them as directed. Some side effects are the same as overdose symptoms. Common opiate side effects include:

  • Nausea and/or vomiting
  • Drowsiness
  • Dry mouth
  • Dizziness upon standing (due to drops in blood pressure)
  • Problems urinating
  • Constipation

Side effects can vary by drug, so look for lists specific to your medication. You can usually find these on manufacturers' websites or at your pharmacy.

Taking opiates with certain types of drugs can cause negative interactions, including death. Drugs that can be dangerous when combined with opiates include:

  • Other pain medications
  • Sleep medications
  • Antihistamines (allergy medicine)
  • Muscle relaxants
  • Medications for depression, anxiety or other mental-health problems
  • Alcohol

Again, these may vary by drug. It's important for you to notify your doctor and pharmacist about all drugs you're taking, including over-the-counter ones, so they can help you avoid dangerous interactions.

Reducing Your Risk

The best way to take these drugs safely is to follow the instructions to the letter and double check to make sure the things you combine are safe together. You may want to keep a list of medications in your phone or wallet so they're available to emergency personnel in case of an overdose.

It can also help to have a family member or friend monitor your medications, or to keep a log of the times you take them to help you avoid taking more too early. Pill sorters can help, as well.

Are Opiates Right for You?

Only you and your doctor can decide whether opiates are a good choice for you, based on your diagnoses, symptoms, overall health, and lifestyle factors.

If you don't feel that opiates are effective at relieving your pain, talk to your doctor about possible alternatives.

When making treatment decisions, be sure you consider legal regulations that may make it difficult for you to refill your prescription, such as having to hand-deliver a paper prescription to your pharmacy each month.

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