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.
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).
- See Conserving Energy and Coping Work in Chronic Fatigue Syndrome Except When They Don’t: Study Suggests Large Group Gets No Help
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
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.
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
- your pain getting worse while other FM/ME/CFS symptoms remain stable
- the appearance of ‘diffuse allodynia'; ie parts of body which become painful to the touch
- 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”
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.
- A ‘neurodynamic sliding technique’ to reposition nerves
- Direct Transcranial Current Stimulation
- Oral Iron Therapy
- Exercise in Women
- Permeaprotect (reducing gastrointestinal permeability)
- TD-9855 (experimental drug)
- Repetitive Transcranial Stimulation
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