The Trouble With Pain Treatment Guidelines

By Donna Gregory Burch

I'm trying to figure out why certain medical organizations think they know more about treating my chronic pain than my actual doctors. It seems every single one of these groups shares the same opinion: Opioids are bad. Antidepressants, exercise and meditation are good.

That's the takeaway from new treatment guidelines for fibromyalgia and other forms of “chronic primary pain” released by the European Pain Federation and the UK’s National Institute for Health and Care Excellence (NICE). Both sets of recommendations are on trend with the opioid prescribing guideline adopted by the U.S. Centers for Disease Control and Prevention (CDC) in 2016.

The European Pain Federation recommends against using opioids to treat fibromyalgia, low back pain, irritable bowel syndrome and other forms of chronic primary pain for which there is no known cause. Opioids can be used for certain types of “secondary” pain caused by surgery, trauma, disease or nerve damage, according to the federation, but only when other treatments such as exercise, meditation and non-opioid medications have failed.

The NICE guidelines are even stricter, advising physicians not to prescribe any kind of painkiller to those with fibromyalgia, chronic headache, chronic musculoskeletal pain and other chronic primary conditions. That includes non-opioid painkillers like paracetamol (acetaminophen), non-steroidal anti-inflammatory drugs (NSAIDs), gabapentinoids (gabapentin, pregabalin), corticosteroids (prednisone, prednisolone) and benzodiazepines (Valium, Xanax).

As someone who lives with fibromyalgia, chronic lower back pain and chronic daily headaches, I thank God that I don't live across the pond, as they say. Frankly, I'd probably throw myself off a bridge if my doctors adhered to either of these guidelines.

And no, I'm not being overdramatic. I'm sure I speak for many of the readers here at Pain News Network and my own website, Fed Up With Fatigue, when I express alarm over how authoritarian and inhumane these guidelines aimed at chronic pain patients are becoming.

Of course, things aren't much better on U.S. soil. Physicians here are still running scared due to the CDC's opioid guideline. It's becoming increasingly difficult to find doctors who will prescribe opioids or even accept a patient who is already on opioids. It matters little if the patient has been using them responsibly for years or even decades.

A ‘Little Bit of Life’ Gone

A couple of weeks ago, one of my readers shared that she used to be able to work and manage her home when her opioid dosage was at a certain level. But then the CDC decided to stick its nose into her personal health journey by recommending that general practitioners should not prescribe opioids to patients with fibromyalgia.

Her doctor saw those recommendations and cut her dosage. Now, she's basically homebound. The little bit of life that she had as a chronic pain patient is no longer.

How is this fair? Or humane?

It isn't.

And why is she being punished because a small number of opioid users were irresponsible and became addicted? That is not the fault of the millions of opioid users who do use them responsibly!

It's easy for “experts” and regulators to condemn opioids when they're not the ones in pain. And it's a slap in the face to have them tell me I should take ibuprofen for a migraine, or worse yet, to go take a walk.

Obviously, they haven't experienced the headaches that I have - one of which was so bad that I curled up in a ball on the sofa and whispered to my husband through tears, "I just want to die."

And yes, it really was that bad! To suggest that doing some deep breathing or talking with a counselor is going to help that level of pain is completely asinine.

Opioids and Fibromyalgia

But I think what pisses me off the most is that these government agencies and medical organizations constantly say over and over and over again that opioids don't work for fibromyalgia. There's no way they actually took the time to review the existing research, because if they had they would know that statement is based on opinion, not fact.

The truth is very few research trials have actually studied if opioids are an effective treatment for fibromyalgia. In 2016, I took a deep dive into the research on using opioids for fibromyalgia and was stunned by just how little data there really is.

In 2011 and 2013, there were a couple of large studies at McGill University in Montreal, Canada, involving around 300 fibromyalgia patients who were being treated with opioids. The researchers concluded "opioid-treated patients were more symptomatic and were more likely to be unemployed and to be receiving disability benefits."

The inference from that statement is that somehow the opioids increased the patients' symptoms when there's no way to know for sure if that's what really happened. It's entirely possible those patients were on opioids because their symptoms were more severe, which would also explain why those particular patients were more likely to be unemployed and on disability.

You'd think these researchers would remember a simple principle that many of us learned in college: Correlation doesn't equal causation.

Then, there have been at least three studies (2000, 2003 and 2011) that looked at the effectiveness of tramadol, a weaker synthetic opioid, at reducing fibromyalgia pain. All of these studies confirmed tramadol improved fibro-related pain.

A small Swedish study from 1995 found intravenous morphine did not improve fibromyalgia pain, and a 2003 study from the University of Cincinnati College of Medicine concluded opioids were not effective.

I might have missed a small trial here and there, but that's basically the gist of the research that has studied the use of opioids for fibromyalgia. Little has changed since I reviewed the research five years ago. There still haven't been any large trials testing the efficacy of opioids in fibro patients.

So looking at the scant research that's available, how can the people who develop these treatment guidelines honestly say opioids don't work for fibromyalgia patients? They can't.

As the saying goes, "absence of evidence is not evidence of absence." In other words, you can't say opioids don't work when you've never even taken the time to study whether opioids help fibromyalgia pain or not.

And it is disingenuous to suggest otherwise.

Donna Gregory Burch was diagnosed with fibromyalgia in 2014 after several years of unexplained pain, fatigue and other symptoms. She was later diagnosed with chronic Lyme disease. Donna covers news, treatments, research and practical tips for living better with fibromyalgia and Lyme on her blog, FedUpWithFatigue.com. You can also find her on Facebook, Twitter and Pinterest. Donna is an award-winning journalist whose work has appeared online and in newspapers and magazines throughout Virginia, Delaware and Pennsylvania.

UK Guidelines Recommend Exercise and Antidepressants for Chronic Pain

By Pat Anson, PNN Editor

Doctors in the United Kingdom are being advised not to prescribe any type of painkiller to patients suffering from fibromyalgia, chronic headache, Complex Regional Pain Syndrome (CRPS), chronic musculoskeletal pain and other types of “primary chronic pain” for which there is no known cause.   

Those conditions should be treated with exercise, cognitive behavioral therapy (CBT), acupuncture and antidepressants, according to new guidelines released by the UK’s National Institute for Health and Care Excellence (NICE). The NICE guideline is far more strict on the use of analgesics than current treatment guidelines in the U.S. and Canada.

The recommendation against using painkillers goes beyond just opioids, and includes many widely used pain relievers such as paracetamol (acetaminophen), non-steroidal anti-inflammatory drugs (NSAIDs), gabapentinoids and corticosteroids, as well as benzodiazepines such as Valium and Xanax.

“There is little or no evidence that they make any difference to people’s quality of life, pain or psychological distress, but they can cause harm, including possible addiction,” NICE said in a statement.

The guideline says antidepressants such as duloxetine (Cymbalta) and fluoxetine (Prozac) “can be considered” for adults 18 and over with chronic primary pain, even when there is no diagnosis of depression. NICE said antidepressants may help with quality of life, pain, sleep and psychological distress.

“This guideline is very clear in highlighting that, based on the evidence, for most people it’s unlikely that any drug treatments for chronic primary pain, other than antidepressants, provide an adequate balance between any benefits they might provide and the risks associated with them,” Dr. Paul Chrisp, director of NICE’s Centre for Guidelines, said in a statement.

“People who are taking medicines to treat their chronic primary pain which aren’t recommended in the guideline should ask their doctor to review their prescribing as part of shared decision making. This could involve agreeing a plan to carry on taking their medicines if they provide benefit at a safe dose and few harms, or support for them to reduce and stop the medicine if possible.”

The NICE guideline sticks to more traditional recommendations for treating “chronic secondary pain” for which there is a known underlying cause, such as osteoarthritis, rheumatoid arthritis, ulcerative colitis and endometriosis. Pain management for palliative care is not covered in the guideline.

‘Patently Ridiculous’

Although a draft version of the NICE guideline was released last August, pain sufferers were startled by some of the final recommendations, especially those for acupuncture, CBT and exercise.

“The idea that a run around the block will zap the torment of people in chronic pain is patently ridiculous. It doesn’t do a damned thing for my hip,” said James Moore, a UK disability activist who uses a wheelchair. “Did none of the people who contributed to this not read it through this guidance and spot any of the gaping holes in its logic? How is it that I can see them and they can’t?”

“I fear the consequences for those with unsympathetic GPs who suddenly find themselves without medication that may work for them,” Moore wrote in the Independent. “This guidance urgently needs a rethink. Sadly, there may be torture looming for those in torment before we get one.”

The NICE guideline is at odds with recent studies that found antidepressants are minimally effective as pain relievers and often have adverse side effects. A common complaint of pain patients who take duloxetine, for example, is how quickly they became dependent on the drug and have severe withdrawal symptoms when they stop taking it.

The UK guideline also differs from treatment recommendations made by U.S. health agencies. The FDA and CDC recommend gabapentinoids for fibromyalgia, and acetaminophen and NSAIDs for low back pain and migraine.   

The CDC is currently in the process of updating and possibly expanding its opioid guideline to include recommendations for opioid tapering, short-term acute pain, migraine and other pain conditions.