This commentary was initially published on Pain News Network and is being reprinted here with permission from the editor.
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 recommendations for fibromyalgia and other forms of non-cancer pain recently released by the European Pain Federation and the United Kingdom’s (U.K) National Institute for Health and Care Excellence. Both sets of recommendations are on trend with opioid prescribing guidelines adopted by the U.S.-based Centers for Disease Control and Prevention (CDC) in 2016.
The federation’s guidelines recommend against using opioids to treat fibromyalgia, low back pain, irritable bowel syndrome and other forms of non-cancer pain. Opioids should only be used for certain types of non-cancer pain in instances where other treatment options such as exercise, meditation and non-opioid medications have failed.
The U.K.’s guidelines are even stricter, advising physicians not to prescribe any kind of painkiller to those with fibromyalgia, chronic headache, chronic musculoskeletal pain and other conditions for which there is no known cause. That includes non-opioid painkillers like paracetamol (i.e. acetaminophen), non-steroidal anti-inflammatory drugs (i.e. ibuprofen, naproxen, diclofenac), gabapentinoids (i.e. gabapentin, pregabalin), corticosteroids (i.e. prednisone, prednisolone) and benzodiazepines (i.e. valium, xanex).
As someone who lives with fibromyalgia, chronic lower back pain and chronic daily headaches, I thank God I don’t live across the pond, as they say. 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 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 prescribing guidelines. 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 few weeks ago, one of my readers at Fed Up With Fatigue 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?
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 the board members of these medical organizations 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 doing some deep breathing or talking with a counselor is going to help that level of pain is completely asinine.
But I think what pisses me off the most is that these government agencies and 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 larger studies out of 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 more likely those patients were on opioids because their symptoms were already more severe, which would also explain why those particular patients were also 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.
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 patient? 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.
Now it’s your turn: Has your physician stopped or reduced your opioid prescription? Share your story in the comments below.