Fibromyalgia: A Chronic Pain Concern for Many May 1, 2008 12:00 pm - 1:00 pm Fibromyalgia is a chronic pain illness characterized by widespread musculoskeletal aches, pain and stiffness, soft tissue tenderness, general fatigue, and sleep disturbances. It may affect 3-6 percent of the U.S. population. Most sufferers are women. For decades, the pains and concerns of fibromyalgia patients were dismissed by the medical community, but awareness is quickly growing. Learn more about fibromyalgia with Patrick B. Wood, M.D., a leading researcher working to improve understanding and treatment of fibromyalgia. View Dr. Wood's biography here. Submit your questions and comments before or during the discussion. Moderator: Good afternoon and welcome to today's online moderated discussion on fibromyalgia with Dr. Patrick Wood. You can read more about Dr. Wood by clicking on the biography link at the top of this page. We have a lot of questions to cover, so let's get started. Patrick B. Wood, M.D.: I would like to thank the Society for Women's Health Research for the opportunity to participate in today's discussion. Also, thanks to those who made this opportunity possible and to those of you who submitted questions. Colorado: I seem to have terrible attacks two to three days before a snow or wind storm arrives in the state. What is it about weather fronts that brings on fibromyalgia attacks? I also noticed that at sea level the attacks seem to happen much less. Is there any research about how altitude affects fibromyalgia? Patrick B. Wood, M.D.: Many patients with fibromyalgia report sensitivity to weather changes or to certain weather- related factors such as temperature or humidity. The scientific literature on this is somewhat mixed. While most studies of weather-related sensitivity show that many patients cite weather as a factor in worsening their pain, their is often a weak correspondence with specific aspects of the weather, e.g. barometric pressure, humidity, etc. There is some thought that changes in pressure (as are common before wind or rain storms) may affect the small amounts of gas present in joints, which may then cause pain. If a person has an arthritis condition plus fibromyalgia, then they would have an amplification of the joint pains that the weather might cause. Alternatively, it is possible that changes in barometric pressure or other climate variables challenge the body to adapt. In general, patients with fibromyalgia appear to have problems adapting to physiological challenge (e.g. excercise, mental stress), possibly due to abnormalities in an area of the brain called the hypothalamus. In effect, the challenge of adapting to weather variables may tax a person's system in such a way -- for example, by releasing certain chemicals -- that could cause symptoms to flare. For example, there is a curious study by research group in the Netherlands that showed that exposure to poor weather affected physiological variables related to subsequent stress exposure in beagles! (see Beerda et al. Physiology & Behavior 1999). Loomis, CA: What do you think of the newer multifaceted treatment for fibromyalgia patients by endocrinologists? Patrick B. Wood, M.D.: In general, I think a multifaceted approach to the management of fibromyalgia is a good idea, as long as the "facets" in question are known to be beneficial. I am not familiar with any treatment plans that a specific to Endocrinology, per se, although in my own practice I take care to evaluate endocrine function by measuring hormone levels and taking these into account when formulating a comprehensive plan for management. Unfortunately, I think many treating clinicians limit their approach to the treatment of fibromyalgia and related conditions based on their particular specialty (e.g. Endocrinology, Rheumatology, etc) rather than taking a comprehensive approach that evaluates the whole person. Boston, MA: I developed profound fatigue after having a C5-C7 fusion due to a herniated disk. No one can explain it, and the rheumatologist I saw only tested 4 of the tender spots used to diagnose fibromyalgia. My question is this: I read that fibromyalgia can develop after C spine injury. Since I had major C spine surgery, could that have been the precipitating event? My fatigue is profound, but muscle pain is minimal, except in my neck and upper back, but I think that is because of the surgery. Patrick B. Wood, M.D.: Your question is an important one for several reasons. There is a growing awareness in certain quarters of the importance of cervical (neck) anatomy in contributing to symptoms associated with fibromyalgia. For example, there is a paper pending in the Journal of Pain by my colleague Dr. Andrew Holman that describes a high incidence of cervical spinal cord impingement in patients diagnosed with fibromyalgia. The question remains open as to how such a condition may contribute to (or even mimic) the symptoms of fibromyalgia. You state that your primary issue is fatigue, which became dramatically worse following surgery. Fatigue, like pain, is a very non-specific symptom and may have several causes -- even several different meanings. I would want to be sure that you did not have changes in the function of key hormonal systems following surgery, for example the levels of cortisol in your blood. Also, key aspects of the sympathetic and parasympathetic nervous systems emerge from the brain stem in the neck, the dysfunction of which could in turn cause fatigue. Finally, one would want to know the flow of cerebral spinal fluid in brain and spinal canal were normal. San Francisco: How many fibromyalgia patients are you aware of whose fibromyalgia actually turned out to be Lyme disease instead? My fibro pain started three months after a known tick bite on my foot. I did not associate the pain with the tick bite. I went twenty-five years before I found out that my muscle pain was due to inflammation from the Lyme bacteria. This spiral-shaped bacteria invades soft tissue and nerves, and is in the brain within 12 hours of exposure, and starts off a cascade of inflammatory symptoms. I tested positive in an IgG Western blot bloodtest, went on clindamycin antibiotic around the clock, and within one week, I had no more muscle pain!!! This lasted six months and then I guess the bacteria learned to evade the antibiotics. Now I am testing various other treatments, like we all have to do for Lyme disease, since it can be so evasive. Patrick B. Wood, M.D.: The relationship of Lyme disease and other infectious conditions to the development of fibromyalgia (and chronic fatigue syndrome) remains somewhat sketchy. Certainly, there is the thought that certain infections may produce lasting symptoms even after the infection itself has resolved, likely due to changes in the funtion of the central nervous system. Perhaps the most dramatic example of this is the post-infectious Parkinsonism that is described in Dr. Oliver Sack's fascinating book "Awakenings". On the other hand, given the relative non-specificity of that symptoms that characterize fibromyalgia and chronic fatigue syndrome -- which, I should point out, are not identical disorders -- it is possible that mis-diagnosis may occur that may be evident as additional tests are run or as a person's clinical picture changes. Alternatively, it is possible that a person may be "struck twice by lightning" i.e. to contract an infection and later to develop fibromyalgia by coincidence. Baltimore: I receive a shot every three months in my gluteus maximus muscle for fibromyalgia. The relief travels throughout all my muscles making them less stiff and less painful. This relief lasts almost three months. However, I never hear of anyone else using this treatment. Patrick B. Wood, M.D.: Hmm...hard to say without knowing what was actually in the syringe! St. Louis, MO: What if you have been told you have fibromyalgia for about 15 years plus borderline lupus? Now 2 months ago my blood work came positive for lupus. Do I still have fibromyalgia? My pain level has increased dramatically in the last 6 months. So what is it? Patrick B. Wood, M.D.: There are a number of studies demonstrating a high rate of comorbid fibromyalgia in patients with inflammatory conditions, including lupus. The relationship between the disorders is not fully understood. It is important to note, though, that fibromyalgia and lupus are different conditions -- just like diabetes and high blood pressure are different. So, a person could certainly have both. That said, there are a number of possibilities as to why the two might occur in the same person. For example, it is possible that conditions that predispose to developing inflammation contribute to pain. Recent studies have demonstrated that changes in the function of the vagus nerve -- an important player in autonomic function -- may result in both increased pain and predisposition to inflammation. Alternatively, it is known that the chemicals associated with inflammation (called cytokines) can increase pain sensitivity and change other brain-related functions that, together, may produce the types of symptoms typically associated iwth fibromyalgia. Anonymous: Do I stand any chance of remission or recovery? I have been totally disabled for 6 years, see my doctor monthly and do everything we can put together to help me with very small improvement. Patrick B. Wood, M.D.: I firmly believe that the vast majority of patients with fibromyalgia and related conditions can experience meaningful symptom relief. The question is whether or not it is possible to determine the underlying cause of the symptoms that they find so disabling. There are a number of physiological problems that can produce fibromyalgia symptoms, many of which are (regretably) not taught in medical school and not easily demonstrated by standard clinical testing. That said, there is also a great degree to which an individual's ability to adapt to chronic illness that impacts disability per se. It is therefore important to evaluate one's own strengths and weaknesses and seek help to develop coping skills and strategies for symptoms management when needed. Towards this end, counseling and cognitive behavioral therapy may be an important component in comprehensive care. While fibromyalgia is NOT an psychiatric illness, certainly psychological factors determine a person's response to not feeling well. Hanover, PA: What Speciality Physician should a FM patient see? I was diagnosed 3 times with FM once by my Primary Physician, another time by a Pain Physician and more recently by a Rheumatory Physician. My Primary doctor sent me last year to a Pain Physician and he diagnosed me with FM. He told me their speciality does not treat FM patients. I asked if I should go to a Rheumatory doctor and he said, "No, your Primary doctor is doing just fine." I thought she was doing a good job so I just dismissed it. Then a couple of months ago my FM bothered me REAL bad. Pain level 9; I'm usually a 5 with my meds. So my Primary doctor said I feel you should see a Rheumatory doctor since your pain is worse. So I went to the Rheumatory doctor and she said, "Why are you here?" I told her my primary doctor seemed worried because my FM symptoms are worse. She said, "We do not treat FM patients." She said, "It used to be that FM patients fell under our care, but not anymore." She even told me that Johns Hopkins Rheumatory is turning down new Fibromyalgia patients. She tested me and said yes you do have FM and sent me out for other test for the possibility of my FM being secondary. So I asked her, "If Rheumatory doctors don't treat FM patients, who does?" She said, "Either your Primary doctor or a pain doctor?" I told her I went to a pain doctor last year and he said they don't treat FM patients. She said, "Let's get these tests done and figure that out when the results are back." I feel like the word Fibromyalgia to doctors is a BAD WORD. Patrick B. Wood, M.D.: I'm sorry to hear that you are having such a difficult time finding adequate care. Unfortunately, your story is not that unusual. There is a crisis of sorts in the healthcare community as to the status of fibromyalgia and the clinicians who should care for it. As the science of fibromyalgia advances, many Rheumatologists are wondering why they should be asked to care for disorder that seems to chiefly affect the central nervous system -- that is, the spinal cord and brain. After all, their training has mainly to do with joints and muscles and the way in which the immune system can affect these. On the other hand, it would be news to most neurologists to hear that the majority of findings related to fibromyalgia affect the systems that they specialize in. As of now, central pain states are not a central part of neurology curriculum and training. In general, primary care physicians manage the majority of chronic illnesses on a daily basis, but again -- fibromyalgia has traditionally not been a major part of their training. Given the general lack of training in this area, it is perhaps more important to find a clinician who is interested in you as a person and is willing to partner with you to find what works best. That can be a challenge in itself, depending on the community you live in. Personally, I advocate for the establishment of novel curriculum/training problem that would equip interested care providers to deal with the issues that are unique to complex conditions such as fibromyalgia. Alexandria, Va.: Do you think we will see anytime soon a diagnostic test that can more easily diagnosis fibromyalgia? Where does the research stand on that? Patrick B. Wood, M.D.: Actually, the diagnosis of fibromyalgia is very straight forward: a person must have pain in all four quadrants of their body for at least 3 months and be tender to light touch in prescribed locations. If that is true, then they have fibromyalgia. Period. The problem is, these criteria are not well known among clinicians in general. The criteria are also such that they tell us nothing about why a person might be experiencing these symptoms and, therefore, give little indication as to what sorts of treatments might be best suited for an individual's condition. As to whether there will ever be a blood test or some form of medical imaging to say whether a person has fibromyalgia -- I think the latter (medical imaging) is more likely, due to the fact that brain imaging is the one area producing the bulk of data on fibromyalgia these days. Genetic testing (and specifically genomics) may also contribute to this, although as of now there is no specific "fibromyalgia gene." Personally, I would like to see a revision of the diagnostic criteria as they currently stand that would take into account the myriad of symptosm that go along with fibromyalgia besides pain, such a fatigue, stiffness and difficulties with cognition (i.e. "fibro fog"). Bethesda, Maryland: Have there been any genetic markers identified that are associated with fibromyalgia? Patrick B. Wood, M.D.: As yet, there have been no specific markers that can determine whether a person has fibromyalgia. That said, there is evidence that genes related to the function of certain neurotransmitters (e.g. dopamine, norepinephrine and serotonin) may be altered in certain groups of patients. However, a lot more work is needed in this area! Wisc.: I thought fibromyalgia was an autoimmune disease...but then someone told me it is a pain condition. Which is right? (I never knew there was such thing as a pain condition.) Patrick B. Wood, M.D.: This is an important question: fibromyalgia is NOT an autoimmune disease, which makes it different from conditions like rheumatoid arthritis or lupus. The majority of scientific evidence currently in existance indicates that fibromyalgia is a disorder in the function of the central nervous system (i.e. brain and spinal cord) and not a problem in the tissues of the muscle per se. Richmond, VA: If you think you have fibromyalgia, but haven't been formally diagnosed and your doctors seem skeptical -- thinking it is just a series of unrelated symptoms and ailments -- what should you be doing in terms of tracking and documenting your condition so that you can get an expedited and correct diagnosis? Patrick B. Wood, M.D.: I think the main question might first be why you believe you may have fibromyalgia. The diagnostic criteria are fairly straight forward: pain in all four body quadrants (i.e. right and left side of the body; above and below the waistline) for at least 3 months, plus tenderness to light touch in prescribed areas. If you meet these criteria, you have the disorder. Period. Unfortunately, many clinicians are either unaware of these criteria or ... worse ... skeptical about the 'reality' of the disorder. If that's that case with your personal clinician, it may pay to get another opinion. As far as symptom tracking goes, it is important to realize that while fibromyalgia is (currently) defined by pain, there are a wide variety of other symptoms that patients typically experience, including sleep disruptions, fatigue, stiffness, abnormalities in bowel and bladder function, cognitive problems...the list goes on. In some cases, recognition of the importance of these other symptoms can aid in identifying other conditions that might be present, the proper treatment of which may substantially improve a person's quality of life. Examples of these might be things like irritable bowel syndrome, "TMJ", restless legs syndrome or obstructive sleep apnea. Moderator: Note: TMJ commonly stands for temporomandibular (jaw) joint diseases, which are pain and disfunction disorders of the jaw. Washington D.C.: What are the symptoms of fibromyalgia? Patrick B. Wood, M.D.: The defining symptom of fibromyalgia is chronic widespread pain and tenderness. Patients also experience sleep disturbances (insomnia), fatigue, stiffness and cognitive problems (i.e. difficulty with concnetration/memory, feeling disoriented). Other common symptoms include dry eyes/mouth, difficulty swallowing, bowel and bladder troubles, numbness and tingling. Patients are also frequently affected by other disorders, such as irritable bowel syndrome, temporomandibular dysfunction ("TMJ"), interstitial cystitis and restless legs syndrome. Anxiety and depressive symptoms are also common but not directly related to fibromyalgia. Florida: I am concerned that I may develop fibromyalgia because I am genetically predisposed. Is there any research on supplements or activities that I can engage in that may decrease my chance of developing fibromyalgia? Patrick B. Wood, M.D.: As of now, there is nothing to indicate fibromyalgia can be "prevented" with either medication or activities. However, it is important to understand that many cases of fibromyalgia are associated with exposure to stressful circumstances, therefore managing stress -- and also being aerobically fit (without over doing it) and having good sleep hygeine may be important factors. Michigan: I was diagnosed with fibromyalgia 4 years ago. After years of pain my doctor finally put me on Neurontin. Is this a popular medication? Patrick B. Wood, M.D.: Neurontin (gabapentin) is a seizure medicine that has similarity to Lyrica (pregabalin). There is evidence that Neurontin may be effective for the treatment of fibromyalgia in some patients. kenmore,seattle ,bellevue,washington: I am 62 with FMS. Is FMS a genetic disease? My brother and sister both are younger than myself, but both are starting to have the same subtle symptoms I began with. Our parents -- mother 87, still playing golf, no sign of FMS; father passed at 92, never ill until last 4 months of life, played golf 2-3 times a week also. Patrick B. Wood, M.D.: There is growing evidence that fibromyalgia has a genetic component; however, to date there are no specific genes that are strictly associated with fibromyalgia. It does seem to "run in families", though. On the other hand, there is also evidence that environmental factors and certain life experiences contribute to its development. One may therefore reason that persons in the same family (such as you describe) may have environmental factors in common that might contribute to the development of symptoms. Napa, California: If someone with FM came to you and said they were experiencing FM "Fog" - mental processing difficulty, do you think it could be detected with your brain testing methods? How about fatigue? Could Pain not caused by "noxious stimuli" administered in the lab be detected/shown/seen/imaged? Patrick B. Wood, M.D.: Cognitive dysfunction (i.e. "fibro fog") is a common complaint among persons with fibromyalgia and, I believe, speak loudly about the nature of the condition itself. It is an unfortunately little known fact that some of the same areas of the brain that we use to process information related to concentration and memory also process bodily sensations, including pain. In fact, some of the chemistry associated with concentration and memory overlaps with pain, such as my area of research interest: dopamine. That said, the way that most brain imaging studies are conducted, it would be very difficult to "take a picture" of one individual's brain and point to where they are having a problem. Same with fatigue. With regard to your questions: yes, it is definitely possible to image what we call "non-nociceptive pain". A great example of this comes from the work of Dr. Dane Cook (see Cook et al, Journal of Rheumatology 2004). His lab is also looking specifically at fatigue and cognition in fibromyalgia, as is Dr Dan Clauw's group in Michigan. There are centers that rely on clinical SPECT scans (a type of brain imaging) that use the information to inform clinical decision making (e.g. which drugs to prescribe, what supplements to take) but these are mainly to do with Attention Deficit Disorder (e.g. The Amen Clinics) -- I am unaware of similar work in fibromyalgia per se. Harleysville PA: Having been identified as someone with fibromyalgia and other illnesses that come with living, I am concerned that when a source for my pain is not readily apparent or attributable to a known illness, that it will just be tossed into the fibro bin for the rheumatologist (my current managing doctor for this) without really checking out what else it might be. On a more limited note: In addition to fibro, I also have bipolar disorder and when given most pain meds have a manic reaction to the medication and while experiencing welcome relief from th epain, become almost unable to sleep for 24 hours. I recently went for an 85 hour period of not sleeping. Are there non-narcotic, non-steroidal pain meds out there that might work for me? Patrick B. Wood, M.D.: Your questions highlight two important issues that are very worthwhile -- thank you for asking! The first pertains to the tendency of both patients and their clinicians to attribute all pain to fibromyalgia. This can be dangerous, because certainly a person with fibromyalgia can have other conditions, such a sprains, broken bones, appendicitis -- even a heart attack. On the other hand, it would be inappropriate -- to say nothing of expensive -- to evaluate every single pain associated with fibromyalgia as though it were a life-threatening illness. A balance is therefore needed, with new symptoms evaluated critically. Also, the issue of bipolar disorder is one that has gained increased recognition in fibromyalgia circles. There is evidence that persons with fibromyalgia have an increased prevalence of bipolar disorder ("manic depression") compared to those without fibromyalgia. As you indicate, certain medications (e.g. serotonergic antidepressants, pain meds) can cause mania. With this in mind, it may be worthwhile to determine if anticonvulsants (e.g. Depakote, Lamictal) may be effective in managing one's bipolar disorder given that these also have utility in treating fibromyalgia. As you may know, the one medication currently approved of by the Food & Drug Administration for the treatment of fibromyalgia -- i.e. Lyrica -- was developed as an anticonvulsant. jacksonville, fl.: Are there any medications in the making for the treatment of FM specifically? Patrick B. Wood, M.D.: Yes, there are actually several pharmaceutical companies that have active programs to develop and test medications for the treatment of fibromyalgia. It's an exciting time with regard to this, although it will take a lot of time to determine which of these may be effective at relieving symptoms. In general, there is ample grounds for optimism in this regard. North Carolina: Is there a natural way to help the constant fibro pain ? Patrick B. Wood, M.D.: The world "natural" can be interpreted several ways. One of the most natural ways is light aerobic excercise. The best way to accomplish this is by participating in a program tailored to your individual level of fitness and in which there is some supervision, such as an excercise coach, a class or a partner who will encourage you. Proper diet and nutrition can help, as can proper sleep hygeine. If by natural we mean herbal therapies and supplements, then there are several supplements that have shown promise in treating at least some of the aspects of fibromyalgia, including 5HTP (a serotonin precursor), acetyl-l-carnitine (an amino acid supplement) and melatonin (a natural occuring sleep agent). While not formally studied in formal trials, I also frequently recommend my patients try a product called DL-phenylalanine (or simply DLPA), which the brain uses to make dopamine, since I believe that is an essential problem in fibromyalgia. Also, omega-3 supplementation can be very helpful in my experience. Valerian root extract appears to be be helpful for sleep, as is magnesium supplementation (e.g. with magnesium citrate or magnesium glycinate). Texas: Does diet have an impact on flare-ups? Is there anything that I should avoid? Patrick B. Wood, M.D.: Good question! There is evidence that certain dietary elements can make conditions associated with fibromyalgia worse, such as migrain headeaches, irritable bowel syndrome and interstitial cystitis. There is some limited evidence that monosodium glutamate (MSG) can make fibromyalgia worse in that people who avoid it have less pain. However, as of now we have not identified specific triggers. holland patent, ny: Do a lot of people experience headaches often with fibromyalgia? Within the last 6-12 months I have had more headaches than usual. Patrick B. Wood, M.D.: Headaches are a common problem among persons with fibromyalgia -- both tension and migraine type. It is important to try and identify triggers for your headaches, such as eating certain foods, being in certain situations or having hormonal changes as those associated with menstrual cycles. Headaches may also be a result of having temporomandibular joint dysfunction ("TMJ") or sleep bruxism, both of which may benefit from specific therapies. Cleveland: Many patients with interstitial cystitis also have fibromyalgia. What do you think the physiologic connection might be? Does that point to any new therapies that might benefit both? Patrick B. Wood, M.D.: There are a number of painful conditions that occur with increased prevalence among persons with fibromyalgia -- certainly, interstitial cystitis (a painful condition of the bladder) is one of these. Given that many of these conditions have a number of symptoms in common, there is a growing suspicion among researchers in the field that there may be several factors linking them. Another common observation is that people who develop a regional pain condition, like interstitial cystitis, TMJ or chronic low back pain, may eventually develop the chronic widespread pain that characterizes fibromyalgia. The reasons for this remain unclear. With regard to interstitial cystitis per se -- there is evidence that histamine may play a prominent role in the disorder such that medications that block histamine may have a positive affect. Two tricyclic antidepressants (wch are commonly used to treat pain) that have a strong antihistamine affect are doxepin (Sinaquan) and amitriptyline (Elavil). Whidbey Island: Is it the chicken or the egg? Sleep disorders and fibromyalgia. Please comment on the role of a sleep study and what can be expected of the information or outcome.....should it be part of the work up? Patrick B. Wood, M.D.: Sleep is a critical factor in fibromyalgia. In fact, the very first objective finding in the disorder was a sleep abnormality called "alpha-delta sleep" in which patients have an arousal pattern in the brain activity (i.e. alpha wave activity) during deep sleep stages when delta waves are present. This was published in 1975 by Dr. Harvey Moldofsky and colleagues at the University of Toronto. I will frequently order a sleep study in the evaluation of patients with fibromyalgia. Sleep apnea can be appreciated as an extreme form of physiological stress that, if identified and properly treated, may alleviate the problems that lead to the development of chronic widespread pain. Clinicians will often rely on a set of criteria to determine whether a patient needs a sleep study, such as neck diameter, obesity, elevated blood pressure -- but my clinical experience is that fibromyalgia patients often don't meet these criteria but may still have sleep apnea. So, my threshold for referal to a sleep lab is fairly low. Indeed, I have colleagues who advocate that a sleep study should be a standard part of a fibromyalgia patient's evaluation, although there is currently a lack of evidence to support this. Perhaps this will change with time and additional studies. Oregon: Dr. Wood, what are your studies and others studies on the brain showing about fibromyalgia? Patrick B. Wood, M.D.: The studies that I have been fortunate enough to be a part of have demonstrated that persons with fibromyalgia appear to make less brain dopamine than those who do not have the disorder. They also appear to not be able to release it appropriately when undergoing painful stimulation. Given that dopamine plays a critical role in the manner in which the brain deals with pain, this would indicate that problems with dopamine may be central to our understanding of the disorder. There is also evidence from brain imaging that the endorphin system is operating in overdrive in fibromyalgia. The question then arises as to why, if there is an increased level of endorphins being released, are people still hurting. Given that endorphins work in part by activating brain dopamine, these findings compliment the work in dopamine quite well. I have also participated in 3 studies to date that have shown that fibromyalgia is associated with brain atrophy in several regions that are crtical to pain perception and to memory/concentration and also the manner in which a person responds to stress. One of these has made it to press so far (see Kuchinad et al. Journal of Neuroscience 2007). Others researchers have shown that the fibromyalgia brain responds to low levels of pressure or temperature as though the person was experiencing very painful stimulation -- that is, they have shown that when patients indicate they have pain in response to what would otherwise be non-painful stimulation, there brains indicate they are "telling the truth". There are also studies demonstrating that the pattern of blood flow in the brains of patients with fibromyalgia is altered, which may be interpreted to indicate an abnormality in the areas in which this occurs, i.e. the basal ganglia and the thalamus -- both of which are critical to pain perception. West Coast: I've heard that there are some doctors that are looking at the various impacts on the cervical spinal cord and the similarity of symptoms of those problems to fibromyalgia. Can you explain what they are looking at and what research might be on-going? Patrick B. Wood, M.D.: There is a growing sense that abnormalities in the cervical spinal cord (i.e. the part of the spinal cord present in the neck) may contribute to -- or even mimic - the symptoms of fibromyalgia. There are several potential reasons why this may be the case. For example, the brain sends important pain-killing signals down the spinal cord that filter the sensations coming out of the body. Research using animal models has shown that an interuption of these critical signals can produce an increase in pain perception that essentially reproduces the type of sensitivity that characterizes fibromyalgia (e.g. see Mense Scandinavian Journal of Rheumatology Suppl. 2000). In addition, there is evidence that cervical spinal irritation can cause problems with the autonomic nervous system leading to excessive sympathetic ("fight-or-flight") activity and insufficient parasympathetic ("rest-and-digest") activity. Other workers have demonstrated that this type of autonomic imbalance can lead to sensitization to pain, at least in animals. So, there may be a connection based on this and the development of fibromyalgia in persons with what is known as either frank cervical stenosis (narrowing of the spinal canal) or intermittant cord compression, in which case the discs of the neck compress the spinal cord in certain positions. There are now at least 3 papers in press that report an improvement in fibromyalgia symptoms in certain patients following surgical intervention for cord compression or a condition called Chiari malformation, i.e. a narrowing of the outlet of the skull through which the spinal cord passes. While a number of researchers are skeptical of this, it does seem to be a promising line of inquiry at least in a subset of patients. Indeed, work is currently underway to determine the manner in wch problems with cervical anatomy -- particularly problems evident when the neck is either extended or flexed -- might be related to fibromyalgia. Seattle: Treatment for fibromyalgia seems to be different in every patient. Are there subgroups of fibromyalgia? What research is going on to try to break out subgroups and develop separate treatment protocols? Patrick B. Wood, M.D.: There is, indeed, a growing body of evidence to suggest that there may be sub-types of fibromyalgia. In this way, the pain of fibromyalgia may be conceived of as being similar to a fever -- i.e., there may be several ways to develop it. Several lines of evidence have suggested this, based on differences in the levels of certain chemicals in the cerebrospinal fluid, the manner in wch the autonomic nervous system functions, and the ways in which persons adapt to or cope with pain. Ideally, we will eventually be able to determine what "type" of fibromyalgia a patient might have based on non-invasive testing (i.e. without blood work or expensive brain imaging techniques) -- for example, what if a certain type of fibromyalgia were associated with one set of symptoms, while another type was associated with a separate set? Questions like this are informing research that is currently underway -- it's an exciting field of inquiry! Portland: What opportunities are you aware of in the next year for medical professionals to become more educated about the diagnosis and treatment of fibromyalgia? Patrick B. Wood, M.D.: Medical education aimed at bringing medical professionals up to speed on fibromyalgia is a rapidly developing area. For example, the University of California at Fullerton is in the final stages of developing its FAME program, which comprises a cycle of video lectures on core topics related to fibromyalgia and its managment incorporating both pharmaceutical and adjunct modalities, such as nutrition, biofeedback and excercise. Further information on this program should be available in the near future. There are also several continuing medical education programs being developed by patient advocacy groups, including the National Fibromyalgia Association (NFA) and National Fibromyalgia Research Association (NFRA). For more information on these events, please visit these organizations' websites -- they are excellent programs! There are also several programs under development by medical education specialty companies. Some of these materials in development are scheduled for general distribution among targeted provider groups, while others will be available in an on-line format. In addition, fibromyalgia has also become an important topic at professional medical seminars, whether hosted by medical specialty organizations (e.g. the upcoming American College of Obstetrics & Gynecology meeting in New Orleans) or by pain research organizations, such as the American Academy of Pain Medicine and American Society for Pain Educators, both of which hold meetings in September of this year. Idaho: Is fibromyalgia still a controversial diagnosis? Do you still get physicians telling you that they "don't believe" in fibromyalgia, or do you think most physicians have enough understanding to know that the syndrome exists, even if we don't know all about it yet? Patrick B. Wood, M.D.: It is an unfortunate reality that fibromyalgia remains an area of controversy among clinicians and third-party payers. This is frustrating and somewhat perplexing given the growing amount of evidence to indicate that there are several demonstrable abnormalities associated with the disorder. I guess things take time to change. It may help to keep in mind that several disroders that are now well understood in terms of pathophysiology -- e.g. Parkinson's disease, epilepsy -- even asthma -- were once considered either psychiatric problems or even forms of demonic possession (!). History will eventually bear out the reality of the disorder and -- I believe -- put to shame those who doubt its existence. It's just a matter of time...and patience. Rockville, MD: Dear Dr. Wood: How often have you treated patients with both interstitial cystitis and fibromyalgia (considered to be overlapping conditions)? What is your treatment protocol for such situations? Do you believe that there is an underlying causal connection between the diseases? If so, what? Thank You. Patrick B. Wood, M.D.: Fibromyalgia and interstitial cystitis occur together (are comorbid) in a number of patients. The reasons for this are not completely understood, although there is reason to think that both are associated with changes in the central nervous system that result in increased pain sensitivity. A frequent case history is that someone develops a regional pain syndrome such as interstitial cystitis or TMJ and later goes on to develop fibromyalgia. There is some thought in the research literature that interstitial cystitis may be related to histamine release in region of the bladder, wch would lead to increased pain sensitivity. As a result, I frequently try agents like doxepin (Sinaquan) wch is useful for pain, sleep -- and is a potent antihistamine. There has also been a recent article linking pelvic pain and interstitial cystitis to a condition called "small intestinal bacterial overgrowth" wch is common in irritable bowel syndrome and also, apparently, in fibromyalgia. If bowel habits are problematic, it may be worth exploring whether treatment with an non-absorbable antibiotic like neomycin might be effective. puget sound, wa: I was just diagnosed with fibromyalgia. Will I still be able to get pregnant and have a baby? Patrick B. Wood, M.D.: Having fibromyalgia is not known to affect fertility, and certainly women with fibromyalgia do get pregnant and have healthy babies. In fact, some patients state that their fibromyalgia symptoms seem to get better when they are pregnant, although not always -- some say they get worse. Whether or not a woman is able to get pregnant may be affected by other factors, such a having hypothyroidism or a condition called polycystic ovary syndrome (PCOS). The relationship of fibromyalgia to these conditions is not currently understood. Snowy-ville (still!): Is there any evidence that being from a certain part of the world makes you more susecptiable to having fibromyalgia? For example, I've heard that multiple sclerosis appears to effect women from colder climates more frequently. Patrick B. Wood, M.D.: As of right now, there is nothing in the medical literature to show that living in certain climates makes fibromyalgia more common or worse in its presentation. We know that fibromyalgia affects people around the world, from those living in very northerly (or southerly) latitudes to those living in the tropics. That said, we also know that fibromyalgia patients do seem to be unusually sensitive to cold temperatures, so living where it is cold would make this sensitivity more problematic. Capitol Hill: What age are most fibromyalgia patients diagnosed? Patrick B. Wood, M.D.: The majority of fibromyalgia patients appear to receive their diagnosis in the late-30s and 40s, although we know symptoms can develop much earlier. Also, the incidence of fibromyalgia increases as people get older, up until their 70s. munster, indiana: What, in your opinion, is the long term outlook...quality of life for a FM sufferer? Patrick B. Wood, M.D.: I think the future is very bright with regard to our understanding and effective treatment of fibromyalgia. Unfortunately, there is still a lot of work to be done in understanding the disorder and getting the word out to clinicians about how to diagnose and treat it. But over all, it's an exciting time -- a "new day" if you will. utica, ny: I was recently hospitalized with chest pain. The doctor I saw at the hospital said it was a pulled muscle but I disagree. My Rheumatologist and my family Dr said it was probably a flair up of my fibro. Does this sound normal? I have had the same pain more than once since that incident. I also get a feeling like someone is squeezing my chest. Is this something that others have had complaints of too? Patrick B. Wood, M.D.: Chest pains are an especially worrisome complaint in medical circles due to their association with heart disease. Typically, these are evaluated with electrocardiogram (EKG) and excercise stress testing. The risk in fibromyalgia is having all pains attributed to fibro when, in fact, there can be other reasons to hurt -- some more important than others. Los Angeles: Do you have any information on the correlation of Chiari Malformation and people diagnosed with Fibromyalgia? Patrick B. Wood, M.D.: There are currently 4 articles in publication regarding Chiari and/or cervical stenosis and its relationship to fibromyalgia. More are pending as of now, and I also know of research efforts to expand on this topic. For more information, see the following references: 1: Heffez et al. Clinical evidence for cervical myelopathy due to Chiari malformation and spinal stenosis in a non-randomized group of patients with the diagnosis of fibromyalgia. Eur Spine J. 2004 Oct;13(6):516-23. 2: Thimineur et al. Functional abnormalities of the cervical cord and lower medulla and their effect on pain: observations in chronic pain patients with incidental mild Chiari I malformation and moderate to severe cervical cord compression. Clin J Pain. 2002 May-Jun;18(3):171-9. 3: Bradley LA, Alarcón GS. Is Chiari malformation associated with increased levels of substance P and clinical symptoms in persons with fibromyalgia? Arthritis Rheum. 1999 Dec;42(12):2731-2. 4: Heffez et al. Treatment of cervical myelopathy in patients with the fibromyalgia syndrome: outcomes and implications. Eur Spine J. 2007 Sep;16(9):1423-33. Washington, DC: What are your opinions of the new commercial drugs for fibromyalgia? Do you think this will this help drive more research in the field? Patrick B. Wood, M.D.: I am very gratified to see the pharmaceutical industry focusing efforts on finding treatments for fibromyalgia and hope that this will spur an investment in efforts to understand its cause(s) and not just how to treat its symptoms. Dartmouth, MA 02747: What tests are done to discover that you have fibromyalgia? Patrick B. Wood, M.D.: The diagnosis of fibromyalgia depends on a physical examination called the "Manual Tenderpoint Survey" in which a clinician applies pressure to a number of specific areas (called tender points) to determine if a patient has pain to light touch. There are no blood tests or imaging studies to make the diagnosis, but often time blood work and xrays are taken to rule out other conditions that might mimic fibromyalgia or aggravate its symptoms. In some cases, it is useful to get a sleep study (polysomnogram) to evaluate for sleep apnea. Also, if a person's pain gets worse with their neck in certain positions (for example, when looking up at the ceiling or sitting in a hair dressor's chair) it may be useful to get an MRI of the neck in extension to evaluate for problems related to cervical stenosis. Cincinnati, OHio: I had one Rheumatologist suggest that I was classic Ehlers Danlos SYndrome due to the fact that I had some hyperextensibility and mottled, sensitive skin and that FMS was a comorbid to that. My young son too has been diagnosed with a connective tissue disorder (NonMarfans Aorta dilation) most likely genetic however Geneticists have ruled the Ehlers Danlos diagnosis for him. My question: Are you seeing any correlation with FMS and genetic connective tissue disorders? Patrick B. Wood, M.D.: Yes - there is a growing awareness of a connection between fibromyalgia and laxity of joints (hypermobility syndrome). Both are associated with autonomic dysfunction, and in fact there is evidence that autonomic dysfunction may produce the type of pains that characterize fibromyalgia. Moderator: This concludes our live discussion today. Thank you to everyone for participating, especially Dr. Wood for taking time out of his busy schedule to answer questions. The depth and quality of both the questions and answers today have been tremendous – and this is the most number of questions we’ve ever had for a single topic. For additional, in depth information on fibromyalgia, the Society for Women’s Health Research suggests you contact these two organizations: National Fibromyalgia Research Association Phone: 503-315-7257 National Fibromyalgia Association Phone: 714-921-0150 Both organizations have information for patients and health care providers, as well as information on upcoming events that may be of interest to fibromyalgia patients and those interested in or concerned about the issue. A full archive of today's discussion will be available here on the Society’s Web site for future viewing. To learn about upcoming chats and other women’s health information, sign up for our e-newsletter. Thank you again for joining us.
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