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Fibromyalgia: Treatment update/Chat about musculoskeletal pain and fatigue disorder

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    Fibromyalgia: Treatment update/Chat about musculoskeletal pain and fatigue disorder

    Fibromyalgia: Treatment update
    Chat about musculoskeletal pain and fatigue disorder
    By Kim Jones, Ph.D., RN, FNP

    If you are one of the 4 million Americans suffering from the chronic pain of fibromyalgia, see what researcher and WebMD message board expert Kim Jones, Ph.D., RN, FNP, had to say. She joined us to answer your questions and share the latest treatment information about this debilitating disorder.
           Member question: Will a restricted diet help?
           Jones: There are about five studies on diet and fibromyalgia right now. One of those five indicates that a very strict raw uncooked vegetarian diet is somewhat helpful.

           However, most of the people in that study dropped out in less than three months because it is almost impossible to eat like that long term. So right now we think the best advice is to follow a well-rounded diet, much like that prescribed for heart disease.
           Member question: Will a balanced carb-protein-fat diet plan be helpful?
           Jones: We are currently doing a research study in which we are asking people with fibromyalgia to tell us whether an Atkins-type high-protein, low-carbohydrate diet is any better than a well-rounded high complex-carbohydrate, moderate protein, and lots of fruits and vegetables diet.
           Our early impressions are that an Atkins type diet is not helpful.
           Member question: I was told by a naturalist that it is something that could be overcome? Do you feel that is true?
           Jones: I do not believe that someone with fibromyalgia can think himself or herself well, any more than someone with cancer, diabetes, or heart disease could overcome their disease.
           Member question: Are you saying people with FM cannot think?
           Jones: Perhaps I was not clear in my response. People who believe that all someone needs to do is believe they can get better are essentially blaming the victim. People with FM need appropriate medical care and understanding about the seriousness of their symptoms.
           As to the question, "Can people with FM think?", the answer is that approximately 70 percent of people with FM report cognitive difficulties. Fortunately, these cognitive difficulties are not the same type experienced with Alzheimer's disease, nor do we have any evidence that people with FM degenerate into Alzheimer's or other severe cognitive syndrome. However, cognitive therapy is helpful in FM, particularly things like reducing the frequency of multi-tasking, making lists, and establishing habits. We send people with FM to our speech therapist who specializes in these types of cognitive tricks and find that people's quality of life improve dramatically when they have more control over their cognitive ability.
           Member question: Is myofascial pain syndrome close to FMS or is it like apples to oranges?
           Jones: Myofascial pain syndrome is fibromyalgia without central sensitization. Central sensitization is the brain and spinal cord being on overdrive. It is analogous to turning the amplifier up on a stereo. Noise is louder, lights are brighter, cold is colder, pain is more painful, and even touch is painful. So people with myofascial pain syndrome have pain in various tenderpoints but they don't necessarily have central sensitization.
           Member question: My daughter is a young, quite fit, active woman (25). She has been diagnosed, after years of tests, with fibromyalgia. To control the pain and help with the sleeplessness she was given tricyclic drugs. Within a short time, she suffered a seizure (first ever). During the subsequent tests it was discovered that her brainwave patterns "spiked" occasionally. The drugs have been discontinued (at the advice of a specialist in epilepsy). Currently her only treatment is walking (2-3 miles a day), Ambien, and the guaifenesin protocol.
           Some circles suggest that brain activity such as my daughter's could be preventing restorative sleep and such a cycle keeps her muscles from daily repair resulting in fibromyalgia. What are your thoughts on this possibility? Her epilepsy specialist does not have her on seizure medication (since she has had only one seizure and that one MAY have been caused by the meds) and her rheumatologist does not know of a link between the two conditions. Is there any investigation concerning brain-wave activity (interrupted) and fibromyalgia? Can seizure medicine smooth out the spikes and allow her to get "normal" sleep and thereby lessen the effects of fibromyalgia? Are brain "spikes" a permanent condition? Thank you for any information.
           Jones: It sounds like your daughter may have two separate diagnoses: Fibromyalgia and a mild seizure disorder. This means that we have to be careful about her fibromyalgia medications, because some common fibromyalgia medications lower the seizure threshold and could bring on a seizure. However, she still needs treatment for her pain and disrupted sleep. I would consider talking to her doctor about taking medications such as Ultram or Ultracet for pain, Ambien for sleep, and/or Neurontin for pain and sleep.
           As to the pathophysiology of sleep-wave abnormalities in fibromyalgia, we have known since 1976 that people with FM have sleep-wave abnormalities. Specifically they're thought to have something called Alpha wave intrusion in deep sleep. These Alpha waves wake people up or almost wake people up several times an hour. Therefore they almost never get into stage 3 and 4 sleep. Stage 3 and 4 sleep is the period that many restorative chemicals are released from the brain.
           One of these chemicals we study at my university in Oregon is growth hormone. Growth hormone is released during deep sleep and during intense exercise. But we have found that in fibromyalgia growth hormone is not released during intense exercise, so we are conducting a study in which we are giving a medication called Mestinon, which allows the release of growth hormone during exercise. We hope to finish this study by spring 2004 and will share the results as soon as we have them.
           Member question: Can you comment on whether there is any connection between fibromyalgia and orthostatic tachycardia and orthostatic hypotension?
           Jones: Postural orthostatic tachycardia syndrome, which is abbreviated POTS, is sometimes found in fibromyalgia. This is a condition of dysautonmia. When people lie down and then stand up, their heart races. Sometimes it races so much that they can't get adequate blood flow to their brain and feel like they're going to pass out. There are medications available to slow the heart rate if you have POTS.
           The next condition you mentioned is neurally mediated hypotension. This is more common than POTS. This gives you feelings of fatigue that are often more bothersome than pain. To test for neurally mediated hpotension, ask your health-care provider to check your blood pressure while lying down flat on your back and then again immediately when you stand up. If the top number of your blood pressure drops 15 points or more you need a tilt table test to see if you have neurally mediated hypotension. If you do have it, there are sodium-conserving treatments available, such as increasing the salt in your diet or taking prescription medications such as Fluronef.
           Member question: Do you believe that some FM diagnoses could actually be the result of multiple other health issues that are not serious on their own but cause debilitating illness such as FM in combination? Example, if a person has a sleep disorder, TMJ, mild MVP, mild disc compression in neck plus needs glasses, this could explain the fatigue, aching of muscles, dizziness, headaches, shoulder and arm pain, irritable bowel, and countless other FMS symptoms. I guess I am still in denial about my FMS diagnosis and feel like there should be an explanation for my pain and other symptoms.
           Jones: The reason for your symptoms and also the reason that people have FMS is central sensitization. As discussed earlier, all the sensations in your body are amplified. For example, what someone without FMS may experience as a mild abdominal cramp may feel overwhelming for someone with FMS. That may lead them to see a doctor to get a diagnosis for their abdominal pain, which is often found to be irritable bowel.
           Why do some people with chronic pain or disrupted sleep get FMS and others don't? The answer is probably genetics. There are thought to be 20 or so genes involved in the expression of FMS. If you have a lot of those genes, it will take very little environmental insult, such as an accident or prolonged stress to get your FMS going. If, however, you have very few genes for FMS, then you may never experience the disease or you may only experience it if you have chronically disrupted sleep or chronic pain from another source such as an accident or arthritis. Remember that many more people have insomnia than have fibromyalgia, so it's not as simple as just not sleeping well or all of those people with insomnia would also have fibromyalgia.
           Member question: Why is it sufferers are more sensitive to cold? I simply cannot stand it and I live in the Northeastern U.S.
           Jones: People with fibromyalgia are more sensitive to temperature, especially cold, due to sensitization. We are currently conducting a study in Oregon in which we are examining touch fibers called "A" fibers and pain fibers called "C" fibers in people with fibromyalgia. What we expect is that people's touch fibers will be normal, but their pain fibers will be overly sensitive. We are doing this with cold water, because cold temperatures are known to be very problematic in fibromyalgia.
           Please post on our message board for tips about feeling more comfortable in the cold. Our members have lots of good ideas.
           Member question: I have had tremendous memory problems and am quite scared about it.
           Jones: People with fibromyalgia have been found to have cognitive abilities that are similar to people who are 20 years older than they are. The most common deficits are decreased attention, decreased ability to multi-task and decreased short-term recall. Fortunately, there are ways to improve all of these.

           Also, people with fibromyalgia do not generally progress to serious neurodegenerative diseases such as Alzheimer's. Often we find that if people can get some relief from their pain, their disrupted sleep, and depression and anxiety that their cognitive abilities improve.
           Member question: I am one of those people who have Alpha wave intrusion. During a sleep study last spring it was discovered that I go from wide-awake to REM sleep. I totally skip stage 3 and 4. Have you found any medications that could change that sleep pattern, and possibly allow me to get some restorative sleep?
           Jones: What you describe is very common in fibromyalgia. There is currently not a single medication that is equally effective for all people. You might try Ambien or Trazadone or Pregablin under the supervision of your doctor. We generally decide if people are getting better based on how refreshed they feel in the morning as opposed to sending them back to the sleep lab. At our university, sleep studies are approximately $2,000 so we reserve them for people who have symptoms of sleep apnea. Symptoms include loud snoring with periods of not breathing at night.
           Member question: Have any studies been done on the correlation of FM and multiple pregnancies?
           Jones: No. We have zero studies about FM and pregnancy. We get lots of postings on the message board about medications to take for FM during pregnancy, but there is currently no research about the course of FM during pregnancy.
           Member question: If I have FMS, would there be any point in having a sleep study to determine if I have a sleep disorder? I doubt it is sleep apnea or anything serious and I am already on meds for sleep, so would it be any help at all to know what sleep disorder I have? I have been considering paying out of pocket for this for several years.
           Jones: If you don't have symptoms of sleep apnea you can probably manage your fibromyalgia without a sleep study. The most common sleep disruption other than the Alpha wave intrusion is called restless leg syndrome. RLS feels like pain, numbness, tingling, something crawling on your legs, while you're sitting still, such as sitting in movie, riding in a car or trying to sleep at night. Symptoms usually get better if you rub your legs or get up and walk.
           If you have symptoms of RLS, we generally try to treat with medication instead of having a sleep study first, and the medications we commonly use are Sinemet or Requip or Mirapex. Approximately 50 percent of people with FM also have RLS.
           Member question: Please tell me about Pregablin. Is it in the same family of meds as Neurontin? I have tried the others, with no success.
           Jones: Pregablin is essentially a second generation Neurontin. We hope that it will improve sleep and improve pain in FM. However, it is very new, and like any new medication we won't really know how well it works until several thousand people have tried it. I'm a bit biased toward using older medications for the first year or so a new medication is out.
           Member question: What pain meds have you found to work best - especially for the neck and shoulder areas? I've been taking Darvocet for years and now have added a half tablet of Valium when neck is worst. Sometimes it helps, sometimes not.
           Jones: Let's talk about pain management with medication in FM. If the pain is in a very local spot, such as just the muscles around the neck, then it can often be treated with injections of numbing medication, such as Procaine or Botox. However, most people with FM have pain all over and we can't inject people's entire bodies so we need to treat with oral medication.
           We start with non-narcotic medication, such as Ultram or Ultracet, then we often move to short-acting narcotics, such as Flortab or Vicodin. Then we may move to long-acting narcotics such as Oxycontin and MSContin. We also use Methadone for people that need longer-term pain relief. Like with all medications, one has to consider if the side effects are worse than the improvement in pain. Unfortunately, this is still largely trial and error, so you often have to try several medications until you find one that improves your quality of life without giving you intolerable side effects.
           Eventually we will be able to measure your blood and tell genetically which medications will be best for you as an individual. But we're not that advanced yet.
           Member question: Kim, are you able to tell us about the recent trial that you did at OHSU regarding using a drug (was it Mestinon?) for fibromyalgia? Do you have any results to report yet, and if not, where could we go to get those results when they become available?
           Jones: We are currently about three-quarters of the way finished with a study funded by the National Institutes of Health. The study is looking at the combination of three times a week exercise plus a drug called Mestinon. This drug has been found to allow growth hormone to be released from the pituitary during the stress of exercise. If people can release growth hormone, they should theoretically have less muscle damage and therefore fewer tenderpoints and less pain. They should also be able to sleep better and have better exercise tolerance.
           It is still too early to analyze our data, so we don't have results to report yet. We hope to have preliminary reports to report at the International Conference on Pain, called MYOPAIN, in Munich, Germany, July 2004. We will also publish our results in medical journals and post our results on our web site
           Member question: I've had FM/CFIDS with migraines, etc. since an auto accident in April of 1997. My doctor has recently asked if I was ever abused as a child. He said that he has been asking all his FM patients and that most of them had. Have you found any truth to this in your research? If so, why does it take the trauma of an accident, etc., for it to rear its ugly head?
           Jones: Good question. We think that people who have had adverse life events, such as childhood abuse, living with parents who are alcoholics, being in the stress of a natural disaster or military combat may change one's "flight or fight" reflex. If this reflex is changed long enough, one is more likely to stay in the fight side of the flight or fight reflex. This is thought to change brain chemicals such as corticotropin-releasing hormone. Corticotropin-releasing hormone changes the way the brain allows other chemicals to respond to stress.
           The fact remains, however, that everyone who was abused as a child or lived with parents of alcoholics or served in the military do not develop fibromyalgia, so we think it's the combination of genetic predisposition plus environmental accidents, trauma, prolonged stress, or illness that activate fibromyalgia.
           Member question: Kim, I have been diagnosed with FMS then lupus then back to just FMS. Is this normal?
           Jones: Lupus is an autoimmune disease. Fibromyalgia is not an autoimmune disease. Having an autoimmune disease such as lupus or rheumatoid arthritis increases the likelihood that you will develop FM; however, it is unlikely that you will develop an autoimmune disease if you have fibromyalgia.
           Member question: I have an older sister recently diagnosed with fibromyalgia; what are my chances for developing this condition?
           Jones: We have known for many years that FM runs in families. Now that we understand genetics better we're seeing objective evidence of this as well. My question for you would be, how many people in your family have chronic pain? If only your sister does then your chances are lower. Also if it took a severe environmental insult such as a serious accident and prolonged stress to bring on your sister's FM, then it is unlikely that you have much genetic predisposition.
           Moderator: Our thanks to Kim Jones, Ph.D., RN, FNP, for sharing her expertise with us. For more information, please go to our message boards, Fibromyalgia/Chronic Fatigue: Kim Jones, RN, Ph.D., FNP and Fibromyalgia/Chronic Fatigue: Support Group. You can also visit the Fibromyalgia/CFIDS Condition Center here at WebMD.
           Kim Jones is an assistant professor at Oregon Health Sciences University.