Welcome to our Live Chat Event with Dr. Daniel J. Clauw, MD – author of the acclaimed article “How do we know that the pain in Fibromyalgia is ‘real’?”
A Professor of Medicine and Rheumatologist, Dr. Clauw is Executive Director of the Chronic Pain and Fatigue Research Center at the University of Michigan – one of the world’s most active clinical research centers specializing in the FM/CFS/MCS/Gulf War illness spectrum.
At this center and as leader of a nationwide academic/government research team dedicated to these illnesses, Dr. Clauw is constantly involved in multiple studies to understand the mechanisms of pain and fatigue. Then, as an educator, his objective is to help other medical professionals understand the latest science and put effective therapies into practice as quickly as possible.
Q: Dr. Clauw, you wrote the article about how we know the pain in FM is real. Could you summarize briefly the most important evidence? Are there any tests I can tell my doctor about?
Dr. Clauw: There are many lines of evidence that suggest the pain in Fibromyalgia is real, including brain imaging studies, levels of pain neurotransmitters in the spinal fluid, increased electrical activity in the brain, etc. However, none of these tests is available in routine clinical practice.
Q: In your article “Rheumatology Grand Rounds at Rush,”you said the 1990 American College of Rheumatology criteria for FM are outdated. Are there any new criteria in the works? What criteria would be better?
Dr. Clauw: The ACR criteria are still useful for research studies, but they were never intended to be used to diagnose individual patients. Most clinicians don’t know how to do a tender point exam and it isn’t clear that tender points are important, so new criteria would likely just be a list of symptoms that individuals have (e.g., pain, fatigue, sleep disturbance) plus excluding other medical causes of those same symptoms. Such criteria haven’t been developed yet, though.
Q: What has been the most effective medication for Fibro flare-up pain? I currently use Flexeril but it makes me so sleepy I cannot use it during the day.
Dr. Clauw: Flexeril is a useful medication, but most patients find it works best if they take it every night, a few hours before bedtime. This way the side effects are minimized. Ultram is another medication that can sometimes be useful for flares of Fibromyalgia.
Q: Any new meds being experimented with? Lyrica was very bad for me. I felt better but my pulse increased to 165 so I had to stop taking the Lyrica.
Dr. Clauw: Besides Lyrica, there are two other drugs that will likely soon be approved for Fibromyalgia. One of them, Cymbalta, is already on the market. This may be worth a try, in addition to a number of older medications such as Flexeril, Elavil, Effexor, Neurontin.
Q: What advice do you give your FM patients regarding exercise? Is there something specific you have found to be beneficial, also anything particularly detrimental?
Dr. Clauw: I am a huge advocate of exercise. I think it actually works as a “drug” by adjusting levels of neurotransmitters in the brain that are abnormal in FM. Just as with drugs, though, you can overdose with exercise, so the main advice for FM patients is “start low, go slow.” If patients try to very slowly increase their activity over time (e.g., increasing by a minute or so each week), they can usually tolerate and then benefit from exercise. Certain types of exercise, such as warm water exercise, can also be great ways to get started. Eventually, though, patients need to do it every day or nearly every day (just as they would with a drug) to get benefit.
Q: Each time I try to exercise, I end up in bed the same or next day.
Dr. Clauw: You’re probably doing too much – just do very small amounts of exercise that you can tolerate, and try to increase what you do by 5% per week.
Q: I was exposed to mono and got sick soon after. One month later my EBV [Epstein-Barr virus] antibody test was positive and the fatigue never left. Do you see this as possibly being the start of my CFS?
Dr. Clauw: It is quite common for FM or Chronic Fatigue Syndrome to begin after a major “stressor” such as systemic infection, trauma, severe emotional stress, or even being deployed to war. So this is not unusual.
Q: Doctor, do you think that Fibromyalgia may be genetic?
Dr. Clauw: Yes, FM is very familial. If someone has FM the risk of one of their close relatives having it as well are 8X greater than in the general population, and we are beginning to identify some of the individual genes that may be involved in putting individuals at higher risk of developing FM.
Q: Do you believe narcotics hurt more then help for FMers?
Dr. Clauw: Overall, yes. There are many studies now suggesting that narcotics are not very beneficial for the type of pain seen in FM – likely in part because the body is already releasing its own internal narcotics – endorphins – at a high level, and these actually bind to the brain receptors that make narcotics work and block the action of narcotics given. So by and large we only use narcotics when individuals have not responded to anything else.
Q: I find that meditation allows me to use over the counter medication once in a while. What are your feelings on meditation?
Dr. Clauw: Yes, meditation and many other types of relaxation techniques can be very helpful for reducing pain in general, and Fibromyalgia in particular.
Q: I was just diagnosed with FM 2 weeks ago, and am trying to get as much information as possible. My question is: Is it normal to have memory lapses and speech difficulties?
Dr. Clauw: Yes, it is very common to have memory difficulties with FM. Speech problems are less common but sometimes occur. These typically get better as the overall condition is successfully treated (i.e., there is no evidence that this is a brain damage that is irreversible).
Q: Do you find that any of the autoimmune type of illnesses are connected to FM? I have psoriatic arthritis and asthma. Is FM just an extension of those types of illnesses?
Dr. Clauw: Yes, we know that in individuals with autoimmune disorders such as lupus, rheumatoid arthritis, etc. about 15% to 20% of individuals will also develop FM. But we think that the autoimmune disorder leads to FM, just as other types of “stress” can. There is no evidence that FM patients are more likely to develop autoimmune disorders, though (that is, this does not go in both directions).
Q: Doctor, can you talk a little about sleep and FM? Do you believe that if we were able to get a deeper sleep we would have less pain?
Dr. Clauw: The connection between sleep and FM is still not completely understood. There is no question we all feel better if we sleep better, so we try to make sure patients with FM practice “sleep hygiene” (no caffeine or alcohol or exercise soon before bedtime, etc.). However, it is not nearly as simple as that poor sleep itself causes FM – it probably is one of many contributing factors.
Q: How long do you think we are away from finding a cure or the cause of Fibromyalgia?
Dr. Clauw: I think we have already found some of the causes. We know that low levels of certain neurotransmitters (e.g., serotonin, norepinephrine) and high levels of others (e.g., Substance P, glutamate) are contributing to FM, in that studies have shown these abnormalities – and drugs acting on these abnormalities work in some individuals. The problem is that FM is like hypertension – there are many different causes and they won’t be the same in all individuals, and thus as more drugs are available that attack more of the root causes, we’ll get better and better at treating people (just like with hypertension).
Q: Does Social Security Disablity recognize Fibro as a criterion for being out of work?
Dr. Clauw: Yes, there are some individuals who receive disability for FM. However, I generally don’t think it is a good idea for patients to pursue disability. I’ve put many FM patients on disability in my career and my experience is that they almost always have a worsening of symptoms when I do, because they become sedentary, isolated, depressed, etc. So I’m not saying FM isn’t disabling – it is – but that doesn’t mean disability is the solution. I would much rather people try to keep working and that employers accommodate them.
Q: What is the relationship between migraine disease, RLS, and FM?
Dr. Clauw: Both migraines and restless legs syndrome occur more commonly in FM patients, suggesting they have some of the same root causes. Some of the same treatments (e.g., drugs working on serotonin and dopamine respectively) also work in both conditions.
Q: Do you think having FDA-approved drugs will improve respect, treatment and results for patients? Or just make money for drug companies.
Dr. Clauw: Absolutely. Drug companies are already spending a lot of money educating physicians about FM. When physicians better understand diseases they treat them better. So I think that the drugs themselves will be of benefit, but that the education campaigns they disseminate regarding FM will be at least as helpful as the drugs. Some of the companies are also developing very good patient education and self-management programs for FM too. So I’m OK with the companies making money if they help patients.
Q: Will you come to the UK and educate at all ever….?
Dr. Clauw: I spend a lot of my time doing education to both physicians and patients, and have been to the UK. I’d have to agree, though, that the UK is behind most other countries with regard to FM. That will likely change rapidly as drugs are approved – most of the drugs being approved in the U.S. will also likely be approved soon in the UK.
Q: Are there specific vitamins or supplements that you recommend?
Dr. Clauw: The only two supplements that I know of that have been shown to work in clinical trials are magnesium and SAM-e. Magnesium can be taken at 500-1000 mg per day, and I don’t know the dose of SAM-e. That’s not to say that others won’t work – just that they haven’t been tested, or were tested and shown not to work. Before patients start taking a lot of supplements that are unproven they should first try medications and supplements that have been shown to work. (And don’t delude yourself into thinking that supplements are not drugs – if you’re taking something to treat a symptom or disease it is a drug, regardless of whether it happens to be regulated by the FDA or not.)
Q: I know it is so frustrating because a medication that works great for one has horrible results for another. Why do you think this is?
Dr. Clauw: We think that FM patients develop FM for different reasons, just as individuals develop hypertension for different reasons. It is not uncommon in many if not most diseases for a drug to work well in one person and not in another. With time we will begin to apply “personalized medicine” to FM and other diseases so that we can predict what drugs would work best for what patients, but we’re not there yet – for FM or any other disease.
Q: How do you feel about topical treatments for pain?
Dr. Clauw: I’m not a big fan of topical treatments for FM because the pain is often so widespread that a patient would need to take a bath in a topical treatment for it to work. But that doesn’t mean they can’t be of some help.
Q: I have epilepsy (tonic clonic w/ secondary generalization), and with my last seizures (3 in one day) my Fibro symptoms came out in an extremely serious way and I was later diagnosed. Is there any correlation between seizures and Fibro?
Dr. Clauw: I suspect that your seizure for you was a “stressor” – like an infection, trauma, emotional stress. All types of “stress” (when I use the word I mean it in a biological sense) cause release of cortisol, adrenaline, etc., and thus all types of stress seem to be capable or triggering or worsening FM – not just emotional stress.
Q: What are the key questions to ask a new doctor when it comes to understanding their knowledge of Fibro and if they can really treat me?
1. Do you believe in FM?
2. Will you work with me?
Q: Do you think “growing pains” were actually FMS in some of us?
Dr. Clauw: Yes, I do believe that growing pains will eventually be shown to be an “early form” of FM in some individuals. There are some studies that suggest that already, but they’re not conclusive.
Q: What is your opinion about the drug Lyrica?
Dr. Clauw: The data suggest that Lyrica, like the other drugs that will likely be FDA approved for FM, works well in about 30% to 40% of patients who take it. If you’re one of the 30% to 40% that’s great. If you’re not, then you need to try other drugs, or combinations of different drugs.
Q: Can you have only 25% to 50% of the tender spots and still be classified as having FM?
Dr. Clauw: I don’t think people should be counting tender points to diagnose FM, especially in men. Men are much less tender than women, so many men who clearly have FM don’t meet the ACR criteria simply because men are always less tender than women.
Q: What is the myofascial pain connection to FM, and why do the muscles develop lumps or masses that change in size and become extremely painful? They usually can be massaged out; however, it does take a lot of time during a day. Also how do you prevent them or slow the progress?
Dr. Clauw: We know that myofascial pain and FM are connected. It may be that myofascial pain is simply a more regional form of FM; or in someone who has FM, an area where their symptoms are more severe.
Q: How do you feel about the growing topic of vitamin D deficiency?
Dr. Clauw: This is an area that clearly needs more study. We know that individuals with chronic pain are more likely to have vit D deficiency, but that may simply be because they become less active as a result of their pain and don’t get enough sunlight. Studies need to be done to determine if vit D supplementation actually helps the symptoms of FM. In the meantime it is always a good idea to take a multivitamin, especially if your diet does not contain adequate amounts of any vitamin or mineral.
Q: Do you have any experience with Fibro and sound or noise sensitivities, and any suggestions for treatment and / or medication?
Dr. Clauw: FM patients are more sensitive to almost any type of sensory stimulus, including noise, bright lights, etc. It’s as if the “volume control” is set too high on how this information is processed in the brain, and we even see on brain imaging studies that the area of the brain that is responsible for sensory processing is hyperactive in FM. Usually the medications that work for pain noted above also work for this symptom.
Q: Do you prefer use of the old “first line” of meds, like Elavil and Flexeril, to some of the more recent ones released?
Dr. Clauw: I still try Flexeril at a low dose (e.g., 5 mg) a few hours before bedtime, and then slowly increase the dose, because this works very well for some individuals. But I admit that many people are now skipping these older drugs and going right to the newer drugs, which overall have slightly less side effects.
Q: Dr. have you ever spoken to Dr. St. Amand?
Dr. Clauw: No. But I’m aware of the guaifenesin theory, and there has been a very good study done using this that showed it didn’t work better than placebo. That’s not to say it doesn’t make people feel better – just that the one good study that was done that I know of didn’t show it to be more effective than a placebo. But placebos are very effective analgesics, and our group actually does work studying the biology of the placebo effect.
Q: Do you believe a positive attitude and being your own advocate help in managing FMS?
Dr. Clauw: Absolutely. But I think that is true of any disease. However, I liken treating FM in 2007 to treating hypertension 30 years ago. 30 years ago we only had a few drugs for hypertension, so in order to control blood pressure we had to get people to lose weight, exercise, follow low salt diets, etc. in addition to giving them medications. Now anti-hypertension meds are so effective that people can be couch potatoes eating a bag of potato chips a day and we can still get their blood pressure under control.
It may be some time before our FM drugs are that good, and so in the meantime the only way most FM patients can be successfully treated is if they use drugs along with non-drug therapies such as exercise, cognitive behavioral therapy, etc.
Q: I feel like I have learned more from research, books, and the Internet than I have from my own doctors about Fibro. Why don’t more doctors know about Fibro and know how to identify it?
Dr. Clauw: I think that’s very true of most FM patients today. That will change rapidly in the next few years – doctors will receive a great deal of education about FM and I think this will be terrific for patients and the field.
Q: Which sleep medications do you find work best?
Dr. Clauw: Elavil, Flexeril work best, but many people get too groggy. Drugs like Ambien, Sonata, and trazodone work well to improve sleep, but in contrast to Elavil and Flexeril, don’t seem to help the pain and other symptoms of FM as much.
Q: Is there a specialty field you feel better suited to treat FM, CFS, etc? Rheumtology vs. Neurology?
Dr. Clauw: Not really. Rheumatologists are best at differentiating FM from conditions such as lupus or rheumatoid arthritis, if that is a question, but they generally are not any better at treating FM than anyone else. Neurologists are generally not any more facile at treating FM than other specialties either.
I find that good primary care docs are the best to treat this – we just have to give them better drugs, and give them and their patients more education and access to some of the non-drug therapies such as exercise and cognitive behavioral therapy. These things work very well when used along with drugs – but that is rarely done.
[Note for healthcare professionals: Dr. Clauw’s CME/CE credit course describing approaches to differential FM diagnosis and management was launched May 29, 2008 – “Fibromyalgia: A Label for Chronic, Widespread Pain.”]
Doctor, I respect you so much and I want to thank you so much for trying, and helping patients with Fibromyalgia!
Thank you so much for your time tonight – Dr. from UK.
Dr. Clauw: Thank you!
And ProHealth thanks you all for joining us today.
Note: This information has not been evaluated by the FDA. It is generic and is not intended to prevent, diagnose, treat or cure any condition, illness, or disease. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.