When I saw that the video “Fibromyalgia: It’s Real It’s Manageable What You Can Do” had been viewed almost 85,000 times I had to check it out. In it, Dr. Andrew Gross, the head of the Rheumatology Clinic at the University of California at San Francisco presents a a birds-eye view of fibromyalgia.
The grace in this video – which has been viewed over 100,000 times – is Gross’s engaging presentation style. If you want enroll somebody in your life in the idea is that fibromyalgia is a real and serious disorder – this might be the video to do it.
At the same time the video is by no means comprehensive; Gross’s treatment approach to FM is decidedly conservative and it’s getting a bit dated. Still, for an easy to understand lecture on the basics of FM, it may be the best out there.
Fibromyalgia or Chronic Fatigue Syndrome? – You Choose
Gross didn’t talk about chronic fatigue syndrome but as someone who was diagnosed with it decades ago, it was interesting to see how well Dr. Gross’s description of fibromyalgia fit me. Most people with fibromyalgia, he stated, wake up in the morning feeling unrested, stiff, and in pain. As the day wears on they feel better around mid-afternoon, and then feel worse in the evening, particularly following prior busy days (PEM). That pretty much fits me to a T.
Widespread pain, fatigue, and unrefreshing sleep are the three hallmarks of FM. [That’s a bit different from the post-exertional malaise, cognitive dysfunction, and unrefreshing sleep believed to be hallmarks of ME/CFS]. Difficulty concentrating, headaches, jaw and chest pain, bowel problems, frequent urination, pelvic pain, numbness and tingling, itchy skin, and chemical sensitivities round out the short list of common symptoms.
As Dr. Gross explains how he diagnoses FM, it’s clear that I fit the list pretty well: widespread pain, often focused in the upper body, fatigue, poor sleep, and difficulty thinking. With the sleep issue it’s not that FM patients are up all night necessarily (although some are), but that when they wake up they feel unrested, tired, and “out of it”.
He doesn’t use tender points – the standard of FM diagnosis for years – because he has found that they’re not all that tender in some people with FM.
His FM model fits chronic fatigue syndrome fairly well, which brings up the question whether what most of us get diagnosed with depends on which kind of doctor we see first. If you were extremely fatigued and had no pain symptoms – no muscle or chest or head or gut pain – but had problems with sleep and concentration you would have ME/CFS… but how many people with ME/CFS are like that?
Take the poll and let’s find out.
Infection? Gross Says No To Infection
The ME/CFS connection gets another twist when Gross states that the one thing people always ask him about is an infection – do I have an infection? That’s an interesting question given how little infection has been assessed in fibromyalgia research. Although Gross doesn’t mention it, many cases of fibromyalgia do begin with a flu-like illness. Gross does not feel that some underlying infection is likely. [This talk was given well before the Pridgen antiviral studies began and the small nerve findings and cytokine studies popped up in FM.]
Stating that most infections (including EBV) are self-limiting, he quickly moves on. If his approach is emblematic of that taken by most FM doctors, a dividing line between FM and ME/CFS practitioners may be the idea that a significant chronic infection may be present.
A Common Syndrome
The five million people with fibromyalgia in the U.S. is more than rheumatoid arthritis and lupus combined. He noted that hypermobility, thyroid, sometimes diabetes, cancer, autoimmune disorders, lupus, multiple sclerosis, and Parkinson’s can all look similar to FM.[Fibromyalgia gets considerably more research funding from the NIH than does ME/CFS, but per patient funding is actually considerably lower. Neither disease gets more than a modicum of support from the NIH.]
Nervous System Disorder
When Dr. Gross states there is no reproducible evidence of inflammation in the muscles or joints or damage to the nerves as seen in diabetes, he’s clearly a few years behind the times.
If the body is not the problem – and apparently it wasn’t then – then up we move to the central nervous system. It turns out that in times of danger our body can move faster than our brain. If you touch a hot surface, a pain reflex will jerk your hand away before the signal gets to your brain. This reaction occurs between the site of the stimulus (heat on your hand) and your spinal cord. Studies using an electrical current to measure this reaction (twitch reflex) found that it occurred at a lower level of stimulus in people with fibromyalgia than in healthy controls.
Again, note that the brain is not involved at all; this is all taking place between nerves in your body and the spinal cord. This finding helped cement the idea that oversensitive dorsal root ganglia (a collection of nerve bodies just outside the spinal cord) and/or an oversensitive section of the spinal cord called the dorsal horn – both of which process pain signals from the body – are making people with FM more sensitive to pain than normal.
This suggests an improperly set central pain control improperly interprets normal sensations as pain. That is, if you have neck pain the problem is probably not in your neck. If you have gut pain the problem is probably not in your gut. If you have muscle pain, it’s not in your muscles. The problem, Gross believes, is an improperly set sensory system that’s telling your brain to produce the sensation of pain where there’s no real injury.[It’s no longer as clear that FM is simply a nervous system disorder. The nervous system, however, is clearly involved.)
Not Just Fibromyalgia
One bit of good news about this central sensitization problem is how prevalent it is. Dr. Gross noted that many people without fibromyalgia who don’t have widespread pain still have difficult-to-explain pain, sleep, and fatigue issues. That means there are more researchers working on these problems perhaps resulting in a better chance of getting at the cause.[A concept called the ‘fibromyalgianess’ of disease, refers to back or knee pain or fill-in-the-blank pain patients who end up, over time, meeting the criteria for fibromyalgia. For them their pain began with a specific injury which appears to sensitize the nervous system, eventually turning them into fibromyalgia patients. It’s likely that this process occurs in a significant percentage of all pain conditions.
This is good news for fibromyalgia patients, because it should mean more attention to the processes that cause FM. The bad news is that, despite the huge economic burden and suffering that pain produces in the U.S., the NIH still spends a negligible amount of money on understanding and treating it. Because there is no research institute at the NIH, for instance, focused on pain, pain research is underfunded and scattered. We’ll get more into that in another blog.]
“Fibromyalgia: It’s Real It’s Manageable -What You Can Do” by Dr. Andrew Gross
Triggering Factors – Chronic Lyme Disease… err, Fibromyalgia (err, Chronic Fatigue Syndrome?)
Gross’s explanation of what happens with Lyme disease is fascinating. People infected with the Lyme spirochete (helical bacteria), he noted, feel terrible and the infection can take a while to get over. But if you came down with Lyme disease and took your medication, and tests indicate the bacteria is gone and you’re still sick, Gross doesn’t believe you have Lyme disease anymore – you have fibromyalgia.
Gross also suggested that severe traumas deep in a person’s past can set some people up for FM. [That turns out to be true for many disorders including autoimmune ones.
Why get diagnosed with fibromyalgia? Besides the obvious reason – to find appropriate treatments –there’s the less obvious reason – getting diagnosed with FM helps you not to get diagnosed with something you don’t have. [Both Clauw and Martinez-Lavin have noted how hard physicians try (particularly with men) to find something they can pin a diagnosis on. Multiple MRIs later they may finally find a little something that might account for the pain. A failed surgery later the patient is in more pain than ever.]
Do people with fibromyalgia tend to get better over time? Yes, they do. Gross showed a slide indicating about an average 25% reduction in pain for most people over about a dozen years. Do they get cured? The short answer is, at this point, probably not.
The big question about that 25% drop in pain is why it happens. Is it happening naturally? Are they managing their illness better? Are treatments helping? Or have they just gotten used to the pain? No one knows.
The theme regarding treatment is that it takes a village — a multidisciplinary approach that includes a variety of treatments – to really make a difference in Fibromyalgia. This is not a take a pill and get better kind of illness.
The first drugs Gross talked about were aimed at reducing the amount of central sensitization produced at the dorsal horn of the spinal cord. Noting that during fight/flight situations pain sensitization is usually decreased, one approach is to ramp up the fight/flight response using antidepressants such as Elavil, Cymbalta, Savella, and Effexor prescribed at doses lower than used for depression. [Studies have indicated that people without depression, but with pain can benefit from some of these drugs.] Studies suggest they may reduce pain by 25% in about half of FM patients.
Dr. Gross described them as “reasonably effective” in a “limited” number of people. He was not clear, however, how long the effects would last.
Lyrica (pregabalin) and Neurontin (gabapentin) attempt to block the release of neurotransmitters in the nerves sending pain signals to the spinal cord. These two similar drugs (Lyrica is an updated version of Neurontin) “can” he said, “be helpful.” They seem to work best at inhibiting burning and tingling type pain. They often, however, make people sleepy and foggy, and he’s not particularly fond of either drug.
Flexeril (muscle relaxant) – helps some people.
Tramadol – a codeine-like drug that can be helpful for some people. It can cause constipation, though.
NSAIDS (e.g., ibuprofen, naproxen) – have been studied quite a bit but no one has been able to show they’re very effective over a long period of time in fibromyalgia. He generally uses them for people with specific pains such as arthritis.
Corticosteroids (prednisone) – noting that anyone given prednisone will probably feel better for a short time, Gross reported that the effects tend to be short-lived and, if you take it for very long, the side effects are extensive and severe.
Benzodiazepines – Gross is not a big fan of benzodiazepines. They can help people sleep at first, but over time people may require them to get any sleep at all.
Opioids (Vicodin, Oxycontin) – Gross noted that some rheumatologists do prescribe narcotic pain relievers and that they do provide pain relief, but that FM patients often need more narcotic pain relievers than usual to get the same level of relief.
He’s fan of methadone, calling it a fantastic narcotic with long lasting effect, but his experience is that people with FM often need to take higher and higher doses to get the same relief. Methadone and other narcotic pain relievers can be effective, however, for short-term relief.
Gross reported that many, many studies have shown exercise to be helpful with reducing pain and helping with sleep in FM. Gore recommends walking, bicycling, swimming, stretching and Tai Chi and Qi Gong.
People with FM aren’t being asked to run marathons. The ‘workouts’ that work tend to be very mild indeed. Starting exercise programs can consist of 5-10 minute walks that slowly build up over a period of months to 30-60 minute walks. Gross loves water aerobics and swimming, and doing them a couple times a week can be very helpful.
It is at exercise fibromyalgia parts ways with chronic fatigue syndrome to some extent. Some studies suggest exercise is helpful in ME/CFS, but reports of negative effects from mild exercise are legion. Surveys of ME/CFS patients indicate exercise produces more negative side effects than just about any other therapeutic approach to ME/CFS.
It is clear, on the other hand, that the right kind of exercise can help some. Some physicians, using very carefully prescribed exercise programs involving heart rate monitors, report considerable increases in fitness, functioning, and quality of life with some ME/CFS patients, but the ME/CFS population as a whole appears to be more fragile with respect to exercise than people with fibromyalgia.
Stretching and Body Movement Therapies
A stretching program every morning and perhaps twice a day can be very helpful at relieving the stiffness that is so common in FM, but finding a physical therapist familiar with FM that will devise a mild stretching program is important. Finding stretches that attack tight spots in the neck or back or wherever the stiffness occurs can be very helpful at reducing the level of pain signals hitting the spinal cord (and setting off the central sensitization).
The poses in Tai Chia and QiGong that have an isometric, stretching, and meditative components can be very effective.
At the end of this section, Gore noted how difficult these approaches can be. He said he often has FM patients come back and say that after 15 minutes of walking a day for three days they couldn’t move for a week. Starting at something that is ‘ridiculously easy’ and very gradually building up is important, he reported, but he also suggested that it’s important to make a plan (say 10 minutes of walking a day) that keeps you within “reasonable pain boundaries” and that you can stick with even if you feel lousy at first.
Nothing convincing has shown up in the studies indicating diet is important BUT studies have shown obesity does increase the risk of getting fibromyalgia and, if you are obese, losing weight can help.[Since this presentation one study suggested celiac disease is present in about 10% of FM patients with IBS. Another found that a gluten-free diet resulted in a “slight but significant” improvement in symptoms in people with fibromyalgia and IBS. Personally, I have found that eliminating dairy, gluten, eggs and reducing beans was very helpful for what was an ever-increasing and worrisome problem with IBS. Surprisingly, getting rid of tomatoes reduced my knee pain as well.]
The Sleep – Pain Connection
Gross related a fascinating study where it took just three days of knocking healthy people out of deep sleep for them to develop what appeared to be fibromyalgia. It took just three days of interrupted deep sleep to turn them, with their widespread pain, headaches, and abdominal discomfort, into “a mess.” With the periodic arousals and difficulty attaining deep sleep found in FM, people with FM are in much the same boat. It’s clear that increasing restorative sleep results in reduced pain, but how does one do that?
Gross presented a list of good sleep hygiene practices familiar to many with FM and/or ME/CFS. That was it for sleep! He gave no recommendations for drugs, although earlier he noted that Trazodone can be helpful.
The Mind – Training Your Brain
The mind often gets discounted, Gross said, because most people with FM see medical doctors who don’t have any expertise in this area, and because of a backlash from patients who have been told too many times that FM is all in their head.
Chronic pain, he asserted, is such a distressing symptom that it almost inevitably leads to increased anxiety – which interferes with sleep – which causes more pain. Neurologically this process starts at a key pain processing center – the dorsal horn of the spinal cord. The dorsal horn can either increase pain signals or inhibit them, and the brain can either increase or decrease the dorsal horn activity as well. Studies indicate that negative thoughts from depression, anxiety or catastrophizing activate the neural pathways the brain uses to increase pain signals at the dorsal horn of the spinal cord.
This process is getting clearer and clearer for me as I slow my thoughts down. Negative thoughts – coming from the subconscious – really do, at least in my case, directly translate into increased heart and breathing rates and increased pain and stiffness.
Gross then asked, “What would life be like if you could influence the way you think and feel?” There are many ways – from meditation to mindfulness to CBT – to do this, but it led him into a discussion on cognitive behavioral therapy which he called “very effective” … without saying what he meant by that.
Throughout the course of the talk Gross will call several different treatments (exercise and CBT) “very effective or effective”. I think most laymen would assume an “effective” treatment would be effective at removing the illness, but that’s clearly not what Gross means. His statements suggest that most people with FM, even after treatment, are still quite functionally impaired, and cures, if they occur, are rare. Obviously they’re not enjoying stable health if something like that is going to happen. My guess is that his experience is that these approaches are effective at relieving pain and improving quality of life. Note that he rated some of the top FM drugs as being only “reasonably effective”.
CBT for FM consists of educating the patient about how the pain in FM occurs, realistic goal setting [read pacing], relaxation training, and identifying dysfunctional thought patterns and using techniques to counteract them. Studies have shown CBT can reduce that overactive pain reflex Gross talked about earlier.
Relationships can have either a negative or positive effect on pain. Understanding and support from your significant others can help to reduce your pain level. Denial and the “buck it up and get through it approach” results in more stress and more pain. [Gross never talks about the autonomic nervous system, but people with fibromyalgia have the same pattern of fight/flight activation as do people with ME/CFS.]
An overly protective caretaker approach, in which the caretaker does everything for the FM patient, is just as bad in Gross’s experience.[Gross fits very much into the Clauw approach to FM which strives to maintain as much functionality as much as possible. Clauw asserts that many of his patients decline after getting disability income, and he believes it’s important to as much possible stay engaged. With regard to exercise and activities, Gross asserts it’s best to set a schedule and keep to it.]
Effectiveness of Non-Drug Therapies
As Gross goes over how much evidence there is for how effective non-drug approaches to FM are, again he takes a conservative approach. If an approach hasn’t been studied, it’s not going to be in his list. Presumably it’s not in his treatment plans, either.
We don’t know if the treatments in the weaker categories failed to produce effects or if the studies were too small or too poorly designed to provide strong evidence for effects. Since Gross doesn’t address how effective treatments are – he addresses the evidence for efficacy – we don’t know if CBT, for instance, was highly, moderately, or weakly effective – we simply know that there’s moderate evidence for its efficacy, whatever it is.
Note that “moderate evidence” for effectiveness is as high as it gets in FM.
- Moderate Evidence of Effectiveness – aerobic exercise, cognitive behavioral therapy, patient education, group therapy.
- Weak Evidence for Efficacy – strength training, acupuncture, hypnotherapy, biofeedback, balneotherapy.
- Very Weak Evidence for Efficacy – chiropractic, manual and massage therapy, electrosound, ultrasound.
- No evidence for efficacy – trigger point therapy.
Gross believes acupuncture is probably more about the placebo effect than anything. It’s less where the needles are put, he said, and more about having a reassuring and supportive acupuncturist. Gross’s explanation of why there’s weak evidence for trigger point therapy – the only treatment in the “No evidence for efficacy category” – was more about process than results. Explaining, to some laughter in the room, that trigger point therapists appear to be able to inject everything from novocaine to steroids to salt water to water and get similar results, he never actually addressed what the results were – he simply dismissed the therapy.
Is there a relationship between mental illness and fibromyalgia?
This is a good question particularly after the emphasis on CBT, isolation, and relationships in the last section. Gross’s answer was “no” with some caveats. Mood disorders do not predispose someone to getting fibromyalgia and the depression found in FM is a more or less normal consequence of being in pain all the time. Anxiety, interestingly enough, may predispose one to FM. (Baraniuk believes anxiety is probably more important in ME/CFS than depression as well.)
What Kind of Pain is Present in FM?
The pain in FM is very varied, tends to be strong, and has a functional impact; i.e. it’s the kind of pain that keeps you from doing things.
Gross presents an appealing talk that focuses on the conservative management of fibromyalgia. You’ll have to go somewhere else for cutting edge approaches to FM, but the talk is good on basic management practices that can be helpful – and gets across the point that FM is a real disease. It also reveals how little treatment of FM has progressed. With Gross not finding a great deal of effectiveness from the FDA approved drugs, his “management” protocols – and he is mostly talking management – not treatment – focus mostly on behavioral actions people with FM can take: very moderate stretching and exercise practices, relaxation, reducing negative thoughts, improving relationships- the tough stuff basically.
- Coming up: a very different take on diagnosing and treating thyroid dysfunction and fibromyalgia from Dr. Holtorf.
After years of work it’s time to attempt what we’ve never been able to do before – get Congress to force the NIH to double its funding for ME/CFS. Support the historic bill to increase research funding, add new ME/CFS research centers, require the development of a strategic plan, etc.. It will take less than 5 minutes.