Reprinted with the kind permission of Cort Johnson and Health Rising
With 200 publications reaching back over twenty years, Daniel Clauw is perhaps the most prolific fibromyalgia researcher of our time. He’s fought for many years to validate fibromyalgia as a real and serious illness. (For years, the Rheumatological Association held a vote on whether fibromyalgia is a real disease.) His second publication in 1995 “Fibromyalgia: more than just a musculoskeletal disease,” was years ahead of its time in its recognition of the headaches, gut and urinary symptoms and problems with stimuli that make up the FM symptom package.
In his research, Clauw has explored many different aspects of FM including the HPA axis, sympathetic nervous system, catastrophizing, and mindfulness while focusing heavily on brain research and treatments. He played a major role in the definitional changes that have occurred in FM over the past ten years.
Clauw is committed to the idea that central sensitization is the main driver of FM and has pooh-poohed the idea that small fiber neuropathies might play a significant role. A doctor as well as a researcher, Clauw regularly gives broad overviews of fibromyalgia. His almost two hour 2017 You Tube overview “Chronic Pain – Is it All in Their Head?” is summarized below.
We’re not hitting home runs in chronic pain. It’s all about hitting singles and doubles. Daniel Clauw
After pointing to a slide showing his numerous connections to drug companies, Clauw said that all of the FM drugs suck! It’s not that they don’t work- they do work well for some people, but compared to the effectiveness of drugs used in other conditions, they pretty much suck. We still don’t have any really effective drugs for chronic pain.
The takeaway from that sad state of affairs is that if drugs are not effectively relieving your pain – and they probably aren’t – you’re going to have to use non-drug therapies to get real relief. Clauw believes in using drugs in FM and other chronic pain conditions, but he also believes that non-drug approaches should be the bedrock of any chronic pain treatment regimen. He’s not alone. Several books have been written by pain doctors espousing similar ideas.
One of the most striking aspects of chronic pain is the inability of x-rays or MRI’s to determine how much pain a person is experiencing. Clauw pointed to two x-rays: one of a perfectly healthy knee and one of a knee with no cartilage left where the bone was rubbing on bone – a painful looking situation.
But not necessarily. In fact, about 40% of people in the U.S. with no cartilage left in their knees experience no pain at all, while ten to fifteen percent of people with apparently normal knees experience significant amounts of pain. Similarly, thirty percent of people with knee replacements do not experience relief. Why? Because, Clauw asserted, their pain was mostly not coming from their knee, it was coming from their brain.
It turns out that if the pain amplification circuits in the brain are turned up, you’re going to feel pain where there’s no injury. Even a light touch can cause you pain. It doesn’t stop there. You’re going to have trouble sleeping because there’s literally no place in your body which doesn’t register pain. You’ll probably also have increased sensitivity to noises, lights, odors…The same part of the brain that is over-reacting to pain signals is also over-reacting to outside stimuli.
The Big Eight
Fibromyalgia, irritable bowel syndrome, vulvodynia, interstitial cystitis, headache, etc. are all in the same boat. In fact, Clauw believes, the same process is happening in all of them. In 2015, an NIH panel identified eight “Chronic Overlapping Pain Conditions” which primarily affect women and which the panel believes are manifestations of the same general problem. Those conditions include fibromyalgia, myalgic encephalomyelitis/chronic fatigue syndrome, vulvodynia, temporomandibular disorders, irritable bowel syndrome, interstitial cystitis / painful bladder syndrome, endometriosis, chronic tension-type and migraine headache and chronic low back pain.
The 2010 ACR criteria for fibromyalgia suggest it is very much like ME/CFS. It requires the presence of widespread chronic pain – which is common but not always found in ME/CFS – and assesses whether you have fatigue, problems thinking, abdominal pain, mood problems or headaches. (Post exertional malaise is not part of the criteria.)
These diseases are similar in another way. They affect a large number of Americans and all get crappy funding. Calling the need for treatments “urgent,” the report asserted that:
“the federal investment in researching these disorders is woefully inadequate – averaging just $1.06 per affected individual … Research and clinical efforts to date have lacked coordination, efficiency and efficacy. As a result, evidence-based treatment options are not only few, but inadequate.”
Three years later nothing has happened to change that assessment.
Clauw believes that if you have TMJ, the problem is not primarily in your jaw; if you have IBS, the problem is not primarily in your gut; if you have interstitial cystitis, the problem is not in your bladder; in each case, the problem is in the pain volume controls in your brain. The problem is also not psychological. It’s a pathophysiological problem involving the pain and sensory circuits in your brain. One way to tell if you fit into this category of brain-based pain disorders is if you fail to respond to opioids or anti-inflammatories.
Fibromyalgia is the first pain disorder in which it was understood that pain amplification problems are the main problem, but it’s now clear that every pain condition (arthritis etc.) has a subset of patients with fibromyalgia-like symptoms.
Clauw, as he has for years, broke pain into three kinds of pain – nociceptive, neuropathic and centralized. Nociceptive pain is caused by damage and/or inflammation; neuropathic pain is caused by nerve pain from pinched or damaged nerves, and centralized pain is caused by upregulated pain sensing pathways in the brain and produces problems with fatigue, sleep, cognition and sensory issues.
Another way to tell if you have fibromyalgia type pain is to take the point test. An FM patient with knee pain would probably point to the whole knee rather than a specific part of it. Plus, the pain would probably move around. Plus, they will have pain all over the place. In fact, Clauw asserts that the best way to determine if someone has brain derived pain is to have them mark on a pain map all the areas they’ve experienced chronic pain.
Clauw argued that operating on a person with arthritis in their knee when they have fibromyalgia – and pain across the rest of the body – could be somewhat helpful, but they’re still going to be in pain. What that person also needs is a way to tone down their pain response system.
“These are massive differences in treatment responsiveness.” Daniel Clauw
Studies suggest that people with FM, not surprisingly, experience more pain, depression and anxiety and lower physical functioning after surgery that do people without FM. In fact, a large study shows that even people who have a degree of fibromyalgianess; i.e. who have some increased pain, fatigue, etc. – but don’t meet the criteria for FM – have a poorer response to knee surgery (i.e. they still feel pain afterwards).
Clauw noted that depression and a tendency to catatastrophizing can also result in poorer surgery outcomes, but nothing on the scale of “fibromyalgianess.”
The findings are incredible. Just a 1 point increase in the FM score (from 30 to 31) resulted in significantly more opioids being needed in the first 24 hours and a 20% greater chance of not having a satisfactory reduction in pain. A person with a 10 on the fibromyalgia score (who still does not meet the FM criteria) had a 5x less chance of having a satisfactory surgical outcome than someone with an FM score of 1.
This suggests that FM is not an either/or condition but is found in a kind of continuum across the population. Clauw asserted that if doctors were to assess the “fibromyalgianess” of their patients (using the 2011 fibromyalgia survey criteria) before recommending things like knee replacement surgery, their patients might have better results. People with higher FM indexes who took centrally acting pain drugs (serotonin and norepinephrine reuptake inhibitors, gabapentinoid) and employed exercise and cognitive behavioral therapy either before or perhaps in conjunction with surgery will probably do much better.
Get Your Fibromyalgianess Score – From The Fibromyalgia Network
If you can’t read the above instructions, use these instructions. Your Fibromyalgia score is a product of two scores – your Widespread Pain Index score and you Symptom Severity Score.
Widespread Pain Index – Widespread Pain Index (WPI) score: to get your WPI score give yourself one point for each of the areas (eg upper arm, chest) in which you have felt pain for the last week (total possible points – 19)
- left side of the body: shoulder girdle, upper arm, lower arm, hip (buttock), upper leg, lower leg, left jaw
- right side of the body: shoulder girdle, upper arm, lower arm, hip (buttock), upper leg, lower
- chest, abdomen, neck, upper back, lower back
Symptom Severity Score – Then assess your levels of Fatigue, Unrefreshing Sleep and Cognition using the following criteria
- 0 = no problem
- 1 = slight or mild problems, generally mild or intermittent
- 2 = moderate considerable problems, often present and/or at a moderate level
- 3 = severe, pervasive, continuous, life-altering problem
Total your three scores (fatigue, unrefreshing sleep and cognition) up to get your Symptom Severity Score
Add the WPI and SS score together to get your fibromyalgianess score. If your WPI is > or = to 7 and your SS is > or = to 5 OR if your WPI is from 3-6 and your SS is > or = to 9, you are considered to have fibromyalgia. Note that with the second criteria, you don’t need to have much widespread pain to meet the criteria for FM if you have very high amounts of fatigue, unrefreshing sleep and cognitive problems.
Clauw noted that Cymbalta (duloxetine) has been FDA approved for use in low back pain and arthritis precisely because it works on people with these conditions who have higher degrees of “fibromyalgianess.” Studies indicate that people with low back pain who also have pain in other areas respond better to Cymbalta than people who just have low back pain.
The proof is in the MRIs. Clauw’s MRI studies show that applying a small amount of pressure – too little pressure to evoke pain in a healthy person – causes the pain pathways of FM patients’ brains to light up. That increased activity actually tends to make different parts of FM patients’ brains – with the notable exception of one part (the somatosensory cortex) – shrink. That shrinkage is seen in virtually all chronic pain conditions…
The Best Drug for Fibromyalgia
Clauw’s favorite drug for fibromyalgia pain is Flexeril – a muscle relaxant. Clauw likes Flexeril because it’s incredibly cheap, it’s been around for about 40 years, it doesn’t interact with a lot of other drugs, and if it works, it also helps with sleep. If you have FM and you haven’t tried a low night-time dose of Flexeril (cyclobenzaprine), Clauw thinks you may be really missing something.
Clauw uses Flexeril differently than most doctors. While most doctors prescribe 10 mgs of Flexeril every six hours, but Clauw finds that taking 5-10 mgs before bedtime and slowly increasing the dose is much more effective in FM.
The same applies to antidepressants like Cymbalta (duloxetine) and Savella (milnacipran) which also work with pain. Lots of people stop these drugs because they get nauseated, start vomiting, etc., but many could have avoided those side effects by starting at a very low dose and going up slowly (and taking them with food). Nausea with these drugs typically goes away after ten days.
The same is true with Lyrica and Neurontin. Both drugs typically require high doses (Lyrica – ?; Neurontin – 1800 mgs) for them to work, higher than many doctors prescribe. Plus, both drugs are much better tolerated at bedtime than during the day. Lyrica, he noted, actually induces deep sleep….
Clauw does not like opioids, but Tramadol was next on his list of drugs to try. He said that older SSRIs like Prozac, Zoloft and Paxil can be helpful, but you have to use higher doses than are used in depression. (If you’re taking them for depression and have pain, try upping your dose for the pain.) Gamma hydroxybutyrate (GHB, the date rape drug) worked really well in FM trials but was not approved because of the date rape issues. It is available for sleep disorders. If you can find a sleep specialist who will supply it, it may help.
Low dose naltrexone (LDN) – Clauw’s brain studies show that the opioid producing system is upregulated in FM. In fact, it is so amped up that Clauw believes the brain is being flooded with opioids, leaving no place for opioid drugs to work on. But LDN works by blocking the body’s own internal opioid system. (Naloxone – which LDN is derived from – is used in opioid overdoses.)
Surveys suggest that opioids (probably mostly Tramadol) are amongst the most commonly used drugs in FM, but Clauw has long been opposed to their use. He’s one of the few pain doctors who has not prescribed opioids in decades. In fact, Clauw believes that not only are opioids not very effective in FM, but they can actually make the pain worse.
Calling the pharmaceutical companies “evil,” Clauw outlined how the U.S. came to use over 80% of the world’s opioids while having 3% of the world’s population. Then he made a direct plea to FM patients using opioids. If you’re using opioids on an ad hoc basis to help with FM flares, that’s fine, but if you started out on a low dose of opioids and have slowly upped your dose, Clauw asked you to do a mental exercise.
Look back and think what your pain level (0-10) and your functional status was when you first started taking opioids and what it is now. If your pain level and functional status is better now, then fine – keep taking the opioids. Clauw acknowledged that a few people do get relief from chronic pain but in his experience, that’s rare. Most of the people who Clauw sees who have been on regular doses of opioids are in high pain and have very low functionality.
This is partly because of how opioids work; they have a dissociative characteristic which, while it numbs the unpleasantness of pain, it also dissociates people from everything else; it basically numbs you to life.
Clauw rather remarkably finds that slowly reducing his patients’ opioid dose either has no effect on their pain levels or their pain levels drop, their side effects disappear and their functionality increases. (Clauw noted that if you’re taking high enough levels of opioids and then add just a little bit of alcohol, you can die in your sleep.)
The weight of the evidence supports the idea that medical marijuana / cannabis can help with chronic pain, but there is a dark side. Very little guidance is available on how to best use these products and most people are flying blind.
That lack of guidance causes Clauw to push cannabinoids from the first tier of treatments into the second tier. Clauw has said many times that if we could start over today and look objectively at the evidence, the FDA would not approve opioids for chronic pain and would approve cannabis. Studies indicate that cannabis can help people reduce their opioid usage.
He had a few basic tips:
- Take cannabis orally rather than smoking it in order to keep an even keel of the substance in your system. Smoking marijuana causes brain levels of cannabis to explode, leaving you high. Ingesting small amounts of it generally do not.
- Start with a low THC/CBD ratio and start at a low dose and go up slowly. If you haven’t used cannabis and you eat a cannabis cookie, you will hallucinate. (Read Maureen Dowd’s column on her nightmare night with cannabanoid candy.)
- Start a single night-time dose to help with sleep.
Management and “Maladaptive Illness Behaviors”
Clauw noted that pain, poor sleep, reduced exercise and other problems can over time push FM patients into a bad spot which ends up reinforcing and exacerbating their illness. In fact, over a long period of time – say 20 years – Clauw believes the downstream results of FM can account for as much as 70% of an FM patient’s pain and functional problems.
Reduced activity, reduced exercise, and poor sleep can result in weight gain and what researchers call (Clauw does not like the term) “maladaptive illness behaviors.” Maladaptive illness behaviors actually help you survive an illness, but in the long run they make you worse. The end result is a person doing less and less – a big mistake, as Clauw stated that the two most important analgesic or pain reducing activities a person can engage in are good sleep and activity. Studies show that the better people sleep and the more active people are, the more reduced the brain’s pain “volume control” setting is. Exercise and activity won’t make the pain go away, but a drug management program reduces pain of FM the most in his experience.
With that he pointed out a management program his group developed called FibroGuide, which has proved to be as effective in lowering pain as any drug approved for FM. This comprehensive website contains multiple modulesincluding pacing, being active, sleep, relaxation, setting goals, fibro-fog, time for you and communicating. Again, Clauw strongly recommends that FM patients use drugs and management therapies to best control their pain.
A maladaptive illness behavior is a bad habit you develop to survive chronic pain which actually makes the pain worse. Take fibro flares or ME/CFS crashes. Each can seem to come out of nowhere. What, Clauw asks, do you do after three or four bad days when you finally have a good day? You try get a lot done and overdo it – pushing you into a flare/crash – and the cycle continues. The pacing activity module suggests that you pull back on your good days so that you can do more on your bad days. Over time, as you feel better, you can start to add old activities back in and slowly move upwards.