Fibromyalgia may be the quintessential pain disease but level of pain found in chronic fatigue syndrome is no joke, either.  An ongoing CDC study indicated that people with ME/CFS  experience the same level of pain as  people with chronic pelvic pain and more pain than people with  multiple sclerosis  and muscular dystrophy.  Eighty percent of ME/CFS patients suffered from pain in the past week.

Chronic fatigue syndrome is as painful as chronic pelvic pain syndrome

Chronic fatigue syndrome is as painful as chronic pelvic pain syndrome

In fact, a recent study suggesting  ME/CFS patients in high levels of pain tend benefit much  less from pacing and coping strategies that help other patients, suggested the  pain in ME/CFS may be significant than we realize.  All the better, then, that researchers are looking at what really works with pain in FM(ME/CFS).

This study, long overdue, looked at whether the traditional way of treating pain – opioids – is effective in fibromyalgia.   About 30% of people with FM use opioids to reduce their pain (a ratio similar to other pain disorders)  and earlier surveys have suggested patients considered them more effective  than other pain drugs.

Some factors, suggest, however, that  opioids might not be a good fit for FM; one study found that the opioid receptors in the brains of FM patients were already be  ‘filled, suggesting that adding opioids wouldn’t help much, and that paradoxically, going off them might help relieve pain.    Opioids also target pathways in the brain  (opioid pathways) that don’t appear to play a major role in Fibromyalgia.

Take the Opioid Effectiveness Survey at the bottom of the page

The Study

This study assessed pain,  functional status, quality of life (Fibromyalgia Impact Questionnaire), mood and catastrophizing  and opioid effectiveness in fibromyalgia patients attending a  Canadian pain clinic over two years.


Most FM patients were taking moderate doses of opioids with about 2/3rds of patients  on stronger  (eg oxycodone) and 1/3rd on less strong (tramadol, codeine) opioids.

That all the FM patients in the study, whether on opioids or not, tended to have less pain, improved mood and better functionality over time, spoke to the benefits of getting treatment at a good clinic.  The only significant  effect opioids, by themselves had, however, was a  small increase in  physical functioning.  Patients on opioids, on the other hand, were  in more severe pain, were more functionally impaired,  more likely to be on disability and were twice as likely not to be employed….They were not a happy group.

The authors stated

The findings of this open observational study raise questions and concerns regarding the rational use of opioid  treatments in FM patients.

pain figure

The FM patients on opioids were worse off in many ways than those not on them but it wasn’t possible to say why.

This is not to say that opioids don’t have their place; 44% of FM patients rated Tramadol  ‘helpful’, 75% rated  hydrocodone ‘helpful’ and  67% oxycodone in a 2007 internet survey.  The authors noted that opioids are the best available treatment for short-term pain of any kind but raised questions about long term use.  In chronic disorders, prescription drug use, of course, tends to be ‘chronic’ ; ie long lasting  and that’s a different ballgame entirely.

Not surprisingly, the FM patients on opioids tended to be in worse shape when they entered the clinic; they were in more pain,  less functional and more depressed when the study started. More depression and less functionality is expected with higher pain levels but the  opioids didn’t appear to help them that much; despite taking opioids the FM patients on  opioids still had higher pain levels and were less functional that FM patients who weren’t taking them.

The high level of pain experienced by FM patients even after opioid treatment raised  the question whether  opioids could be increasing instead of decreasing pain rather  through a process called ‘opioid-induced hyperalgesia’.

Push-Back: Opioid Induced Pain

Opioid-induced hyperalgesia or  increased pain sensitivity due to opioids  is a well-known  phenomena. Believed to be caused by  neural remodeling of the pain producing pathways, it leads to the same state, ironically  – central sensitization –  believed to play a role in FM and perhaps chronic fatigue syndrome (ME/CFS).  Intriguingly, the glutamergic system, which Marco has been blogging about in ME/CFS,  appears to be the chief culprit in opioid induced pain sensitization.

Warning signs of opioid induced hyperalgesia  include

  1. your pain getting worse while other FM/ME/CFS symptoms remain stable
  1. the appearance of ‘diffuse allodynia'; ie parts of body which become painful to the touch
  1. Pain that increase instead of decrease  as you increase your dosage of opioid drugs

Other Potential Side Effects

A 2011 study by the same authors found  that opioid use in fibromyalgia patients was more commonly associated with a raft of negative outcomes including higher levels of  unemployment, more disability,  unstable psychiatric status, a history of substance abuse, and previous suicide attempts. Since patients taking opioids tend to be in more pain, it’s not clear what role if any, opioids playing in the these more negative outcomes. It is clear, though, that opioids were not  particularly effective in relieving their symptoms.

Long term Use of Opioids Effective for a Minority

It’s pretty, clear, though, that opioids work much better when used for shorter periods of time.

More people are taking opioids for chronic pain than ever but study evidence suggests they’re simply not very effective at reducing chronic pain.   A 2013 review

 “the recent increase in the number of patients taking opioids chronically for pain has not yielded the expected benefits in reduction of symptoms and improved function. Chronic pain patients typically respond well initially to opioid medications, but regular use is associated with adverse psychological and physical effects”



For many people there are no easy answers for chronic pain

A 2011 Cochrane review of opioid use in osteoarthritis (4 weeks) concluded that the small to moderate beneficial effects of opioid  use were outweighed by the high risk of adverse events. Long term opioid use in back injury did result in  increased functioning  or pain but  only in 16 and 27% of patients.  Another study finding  that patients taken  off opioids and given other pain treatments had  higher improvements in pain than  patients not originally on opioids, suggested that the best thing some patients might do is just get off them.

A Cochrane overview of opioid use in rheumatoid arthritis found no difference between opioids and placebo.  My reading of one review suggested the authors believed that opioids were often  functioning as a placebo when used chronically.

Take the Opioid Effectiveness Survey at the bottom of the page

Chronic opioid therapy may be more usefully regarded as a form of comfort care, reserved for those patients who have exhausted other treatments and prospects of recovery. Krashin et. al. 2013

Chronic opioid use can also pack a wallop. A literature review indicated chronic opioid use is  associated  with constipation, sleep-disordered breathing, fractures, hypothalamic-pituitary-adrenal dysregulation, and overdose and that gaps remain in our knowledge.

This is not to say that there are better alternatives or that that chronic opioid use is not helpful for some but the studies indicate opioids are not effective for many.  After noting that opioid use was associated with  moderate severe/severe pain, poor health, low employment, and low quality of life,  the authors of one population study stated

“It is remarkable that opioid treatment of  long-term chronic non-cancer pain does not seem to fulfill any of the key outcome treatment goals: pain relief, improved quality of life and improved functional capacity”

Much More Work on Pain Relief Needed

An ME/CFS patient, Jennie Spotila, speaking at the FDA Stakeholders Meeting for Chronic Fatigue Syndrome, noted that her ongoing problems attempting to find relief from unremitting pain included had taking what sounded like  dozens of medications some  of which worked for a time and then didn’t.

The truth is that most pain treatments are effective for a relatively small number of patients.  The National Pain Summit in Australia  asserted that with  90% of Australians with chronic pain suffering from  under treatment of pain, relieving pain was  ‘the developed world’s largest “undiscovered” health priority’. They noted that most pain management advocacy has been funded by opioid manufacturers and, not surprisingly, tends to focus on better access to opioids.

Fibromyalgia Clinical Trials Currently or Soon  Underway

If long term opioid use is not the answer many people with FM/ME/CFS are looking for what might be? The clinical trials underway on fibromyalgia indicate a variety of approaches – from relaxation/mind/body to experimental drugs – are being studied. Bear in mind that fibromyalgia doesn’t get alot of funding and the ‘breakthrough’ in FM pain may come from studies done elsewhere.

The ME/CFS/FM Opioid Effectiveness Survey



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