Friday, November 30, 2012

Does "Brain Fog" start in the Brain?

Why Stuff Bugs Us So Much with Fibromyalgia & Chronic Fatigue Syndrome

By Adrienne Dellwo, GuideNovember 27, 2012 If you have fibromyalgia (FMS) or chronic fatigue syndrome (ME/CFS), you know that a lot of things started bugging you after you got sick. Bright lights, noise, crowds, clothing tags, waistbands, textures, fragrances, foods ... it seems that just about anything can rattle your nerves or stir up your symptoms, and all of it is aggravating. So why does so much stuff bug us? Two words: central sensitization. Let's take a closer look at the second word first. Sensitization A key aspect of both FMS and ME/CFS is that our bodies are overly sensitive to, well, pretty much everything. It's not that we're emotionally over sensitive -- it's a physiological thing. Medically speaking, the word sensitivity is most often used when talking about allergies. When allergies form, it's because something in the immune system malfunctions and begins reacting inappropriately to a substance. The immune system has been "sensitized" to the substance. In non-allergy situations, it's essentially the same but in a different system of the body. And that takes us to the first word above.... What Does "Central" Mean? In this case, "central" means "central nervous system," or CNS. The CNS is made up of your brain, spinal cord, and nerves of the spinal cord. In FMS and ME/CFS, the entire nervous system becomes sensitized. To what? Anything unpleasant. The medical term for those unpleasant things is "noxious stimuli." It can be a bad smell, pain, bright light, anything. Because our bodies are sensitized, they react more strongly than most people's. That means lights are too bright for us when they're just fine for other people. Same goes for noise, visual chaos, heat, cold, pressure on the skin, etc. Our nerves over-react to the things around us, and our brains basically throw a little hissy fit when they get the signals, and that makes it all the worse. Does Brain Fog from Chronic Fatigue Syndrome Start in the Heart? By Adrienne Dellwo, GuideNovember 28, 2012 brain fog/fibro fogResearch Brief New research suggests that the cognitive function ("brain fog") of chronic fatigue syndrome (ME/CFS) may be due to irregularities in the heart, which in turn stem from impaired vagus nerve activity. Brain fog is one of the most pervasive symptoms of ME/CFS, and it can be a major debilitating factor. Brain fog can include short-term memory problems, inability to multitask, comprehension difficulties, language problems, and disorientation. In the study, researchers monitored cardiac activity while participants performed cognitive tasks. They found: • People with ME/CFS were slower than healthy controls • Heart-rate variability was low and unresponsive in the ME/CFS group • The heart rate was more reactive after cognitive challenges • Heart-rate recovery was slow after cognitive challenges • Heart-rate variability was an accurate predictor of cognitive outcome Those cardiac functions are regulated by the vagus nerve. Dysfunction of the vagus nerve has long been suspected in ME/CFS, especially when it involves a symptom called neurally mediated hypotension (dizziness upon standing due to a sudden drop in blood pressure.) When Kids Have Fibromyalgia or Chronic Fatigue Syndrome By Adrienne Dellwo, GuideNovember 30, 2012 The stereotypical images of someone with fibromyalgia (FMS) and chronic fatigue syndrome (ME/CFS) is usually either an old woman or a burned-out yuppie. That makes it easy for people to miss the fact that anyone, at any age, can get FMS or ME/CFS. That includes children. When you know how debilitating these illnesses are, it breaks your heart to think about what childhood is like for those who have them. When both of these conditions are under-researched, it's fairly obvious that the juvenile forms haven't gotten a lot of attention from the medical community.

Friday, November 9, 2012

Muscle Relaxants: Do they work for fibromyalgia?

Muscle Relaxants: Do they work for fibromyalgia? Your muscles are tight and achy. You may even feel ropy bands with firm knots in the mid-section of the muscle. These are myofascial trigger points, and their location often overlaps with the 18 tender points used for diagnosing fibromyalgia. Just pressing on them can send your pain through the roof. But can muscle relaxants ease the tension in your muscles and help untie (or at least loosen) your painful knots? The question of whether muscle relaxants can relieve your pain is complicated by the fact that this class of medications is very diverse, meaning that many drugs in this class vary substantially from the others. So some muscle relaxants might do the job better than others. Two fibromyalgia specialists offer advice on this topic based on their clinical experience, including which medications in this class they prefer and the doses they prescribe. See table below for more details. Robert Katz, M.D., of Rush University Medical Center in Chicago, IL, says: “Muscle relaxants do help reduce tenderness and may relax patients or ease their anxiety. I tend to prescribe Zanaflex and low dose Flexeril and use them quite often in the treatment of fibromyalgia. I tell patients I don’t want them sedated, but I also do not want their muscles so tender; I want their muscles relaxed. “I start with very low doses, sometimes half a tablet, and I see how the patient does on it. I try to give these medications during the daytime when patients have their greatest amount of pain and muscle tenderness. Muscle relaxants have a transient effect. This means that patients cannot take them at bedtime to reduce morning stiffness eight hours later. They must be on board when the patient has the most amount of pain. “I suspect that this class of medications somehow relaxes the central nervous system a bit and they also have a relaxing effect on the peripheral system (i.e., the muscles). It is somewhat like getting a massage. However, I have never been able to document how much these agents reduce muscle tenderness.” Richard Podell, M.D., of the UMDNJ-Robert Wood Johnson Medical School, with practices in Springfield and Somerset, NJ, offers the following advice: “Some patients find valium-type medications (i.e., benzodiazepines, including Klonopin and Xanax), Flexeril or Skelaxin useful for reducing muscle pain, stiffness, twitching, and spasms. Two muscle relaxants used in multiple sclerosis to treat muscle spasms, Zanaflex and Lioresal, are sometimes helpful in fibromyalgia, too. The major drawback for daytime use of these medications is sedation, with the exception of Skelaxin, because it does not effect the central nervous system. “With regards to dosing, I typically begin with 25 to 50 percent of the usual standard starting dose. Fibromyalgia patients as a group are very sensitive to medication side effects, necessitating that one start low and build up slowly. Otherwise, the initial drug effects are likely to bowl a patient over. “As to why these medications work, we know so little about drug mechanisms, I’ve learned to be quite humble. Some treatments should help in theory but they don’t and vice versa. More impressively, various drugs act one way in one person and the opposite in others, and it is not just people with fibromyalgia. It is well-known that benzodiazepine/valium-type relaxants cause sedation and relieve anxiety in most people, but produce activation and increased anxiety in a small yet significant subset.” Lowest Possible Doses In order to minimize daytime sedation and other side effects, Katz and Podell begin patients on the lowest possible dose. Here’s the rundown, with the generic name in parentheses: Highly Sedating •Flexeril (cyclobenzaprine): 5 mg (10 mg tablet cut in half) •Lioresal (baclofen): 5 mg (10 mg tablet cut in half) Benzodiazepines •Klonopin (clonazepam): 0.25 mg (0.5 mg tablet cut in half) •Valium (diazepam): 1 mg (2 mg tablet cut in half) •Xanax (alprazolam): 0.125 mg (0.25 mg tablet cut in half) Least Sedating •Skelaxin (metaxalone): 200 mg (400 mg tablet cut in half) •Zanaflex (tizanidine) : 1 mg (4 mg tablet is scored two ways)

Get Ahead of the Wintertime Blues

Get Ahead of the Wintertime Blues by Kristin Thorson, Fibromyalgia Network Editor Posted: October 31, 2008 Don’t dread the wintertime blues. Get a jump start in heading off the symptoms associated with Seasonal Affective Disorder (SAD). This common mood disorder can begin as early as October or November and persist through March. Symptoms include a depressed mood, loss of interest, low energy, social withdrawal, anxiety, feelings of guilt, cravings for starchy or sweet food, increased appetite, weight gain, and insomnia.1 Patients say that their worst month is either January or February. Many people who experience the winter blues are not aware that they have SAD. They may simply view this seasonal lull in mood as a normal stage that everyone goes through when the days are shorter and the body gets less sunshine. Because SAD is often overlooked, most patients endure roughly 13 seasonal episodes of this condition before getting treated for it. If you experience repeated bouts with depression during the winter and suspect that you have SAD, don’t assume it’s your fibromyalgia and don’t let it compound your symptoms. Effective therapies are available. Because the nights are longer in the winter, the body’s internal clock and its natural sleep/wake cycle shift.2 The body’s clock and sleep/wake cycle are controlled by the pineal gland at the base of the brain. It secretes melatonin when it is dark at night. When the eyes are exposed to light, melatonin production is shut off. Because the sun rises later in the winter, melatonin is secreted longer in the morning. In genetically predisposed individuals, it is suspected to be responsible for the common symptom of morning tiredness or sluggishness that is associated with SAD.3 Two other pieces of evidence that point to a malfunction in the body’s internal clock mechanism have to do with the effective treatment results obtained by using exposure to bright light in the early morning, or a small micro-dose of melatonin taken in the late afternoon to bring the melatonin “cycle” forward in an effort to reduce morning fatigue. Light Box Therapy Using a bright light box for 30 minutes each morning has been shown in studies to be just as effective as taking an antidepressant, such as Prozac.4 In fact, light therapy tends to work slightly faster and produce fewer side effects than Prozac, a selective serotonin re-uptake inhibitor (SSRI) medication that may cause agitation, sleep disturbance, and palpitations. Analysis of light therapy for treating SAD indicates that patients need to use a high intensity box that emits 10,000 lux; “lux” is the light intensity rating of the box. For a 10,000 lux box, 30 minutes of exposure with your eyes open (but not looking directly at the light) each morning is sufficient.5 Boxes with lower “lux” ratings may be cheaper, but more time is needed to get the same effect. Light boxes are not covered by insurance and can be costly. Shop online at superstores like Costco, or a local health products distributor. Prices start around $200. Light therapy may not be as convenient as taking medication, but the side effects are fewer, despite speculation that these devices may cause an increase in eye strain and headaches. Supplements Research is ongoing on the use of a tiny dose of melatonin (0.1 mg) taken in the late afternoon, but so far it appears to work synergistically with light therapy to treat SAD.3 This small dosage does not produce sedation, but it has enough of a physiological impact to signal the pineal gland to reset the body’s clock. The typical over-the-counter doses of melatonin are much higher (e.g., 3 mg), so you would need to seek the help of a compounding pharmacist to prepare the smaller dose formula. This would also require a doctor’s prescription. When the days are shorter, people are at an increased risk of developing vitamin D deficiency. Talk to your doctor. A vitamin D deficiency is easy to identify and inexpensive to correct. Another option might be to visit a tanning salon a couple of days a week for a limited amount of time to make up for the loss of sun exposure and the ultraviolet (UV) rays that help your skin make vitamin D. A small study showed that UV light helped produce natural substances in the body that made people feel better, experience less pain, and improve mood.6 Medication What about preventing SAD episodes from occurring each winter? First, all other medical reasons for depressed mood need to be checked (such as thyroid problems, sleep disorders, lung difficulties, chronic sinus infections, etc.) One study using long-acting Wellbutrin (buproprion) showed that initiating treatment in November and tapering off the dose at the end of March prevented SAD in 50% of patients.1 The starting dose of buproprion XL was 150 mg/day, and if tolerated or needed, was increased to 300 mg/day. Buproprion is less likely than Prozac to cause side effects, with its primary side effect being dry mouth. In fact, if you have restless legs syndrome (RLS), buproprion is the one antidepressant that will not aggravate this sleep disorder. Self-Help Strategies •Avoid becoming “house bound” by going outside each day. •Make a point of keeping your house or apartment well-lit. •If you have a fireplace, try lighting it on cold days; there are certain comforts associated with warm fires. •Be careful not to unintentionally compensate for increased sluggishness by eating lots of sweets. Weight gain will not lift your mood. •Loosely structure your days to have a blend of time spent on yourself, with others, and doing something productive. Lack of structure is a major contributor to feeling down or blue. •If you are not working outside the house, try getting dressed and leaving the house at the same time each day, say, 10:00 a.m. (just like going to work). This is a good opportunity to run errands, shop, and accomplish other duties early. It can help you feel more productive and stave off some guilty feelings. As you get into the heart of winter, create a plan. Everyone thrives on a mixture of people, activities, stimulation, rest, structure, alone time, and time with others. 1.Modell JG, et al. Biol Psychiatry 58:658-667, 2005. 2.Lewy AJ, et al. PNAS 103(19):7414-7419, 2006. 3.Srinivasan V, et al. World J Biol Psychiatry 7(3):138-151, 2006. 4.Lam RW, et al. Am J Psychiatry 163:805-812, 2006. 5.Golden RN, et al. Am J Psychiatry 162:656-662, 2005. 6.Feldman SR, et al. J Am Acad Dermatol 51:45-51, 2004.

Fibro Out-of-Control?

Fibro Out-of-Control? … two experts offer treatment advice Is your fibromyalgia becoming more unmanageable and is staying awake during the day a constant struggle? Both of these situations can make you wonder, “What can I do to get out of this rut?” Two experienced clinicians describe common reasons for why fibro symptoms can worsen and offer their treatment advice to help you get back on your feet. Charles Lapp, M.D. Internist in Charlotte, NC New or worsening symptoms should not automatically be attributed to the fibromyalgia, even if they are common. The most frequently occurring medical problems I see that may help account for why a patient is in a rut include: Lyme disease, hypothyroidism, low cortisol production, and tooth/gum infections. When patients are not doing well, I always ask if they have had any recent illnesses or infections. If they have had dental work, an infected cap can definitely make them sick. I also inquire about skin bites because this helps to diagnose an ongoing case of Lyme disease (the blood work alone may be inconclusive). I will perform a mini-physical and order lab tests to help identify what might be causing a patient to feel worse. There are many tests for thyroid function, but in people with fibromyalgia the thyroid stimulating hormone (TSH) seems to go up and down, so TSH is not a useful marker. Instead, I measure the real hormones involved in regulating the body’s metabolism, which are T4 and T3 (T4 is the version that circulates throughout the body and is converted into the active version, T3, as it enters all cells before going to work). I also test for auto-antibodies, especially if the thyroid gland is tender. If T4 and T3 are both low, then I might put the patient on supplemental T4 (e.g., Synthroid). However, many of our patients do not efficiently convert T4 to T3, the active hormone. These patients need to be placed on T3 (such as Cytomel) or T3-containing formulas, such as Armour. In either case, I monitor their thyroid hormones at least annually. If anti-bodies to the thyroid are present, it can cause too much fluctuation in the hormone levels, making the tests unreliable. Then I have to go mostly by how the person feels to adjust the treatment dose. Many of my fibromyalgia patients have thyroid tests results in the normal range, but may have all of the symptoms of hypothyroidism. Examples include dry skin, brittle hair, constipation, and croaky voice—in addition to profound fatigue. I put them on a small dose of thyroid and they feel so much better. It’s not a cure, but it does help. The least expensive way to measure cortisol is to check it in the saliva. I ask patients to take two to three samples throughout the test day. The morning cortisol is usually normal, but by the afternoon some patients don’t have any at all, causing them to feel totally drained. For this group of people, I prescribe a tiny dose of hydrocortisone in the morning and another at noon, with the maximum daily dose not exceeding 15 mg. Often this will give them a small boost in daytime energy. If no other source of the patient’s symptoms is found but they are feeling as though their health is continuing to decline, that tells me they are using up all of their available energy. I always talk to my patients about their energy limits. Many will attempt to add a full exercise program onto what they are already doing, but this doesn’t work as expected. This happens because they overextended beyond the boundaries of their energy envelope. Patients who are experiencing increased symptoms need to incorporate at least two rest periods into their day. Then as soon as they feel they have the energy, they should slowly add small amounts of light activity into their schedule. The point is, patients cannot add an energy-consuming activity without first making room for it within the boundaries of their energy limits. To help patients stay within their energy boundaries, I teach them the three Ds: delay, defer, and delegate. Patients need help with solving relationships, work issues, and adjustments needed for living with a chronic illness. They need to find counselors who are willing to work like coaches to identify what is bothering them and help them work on solutions. These therapists can be hard to find. As an alternative, I have collaborated with Bruce Campbell, Ph.D., who coordinates group courses by email and Internet. The costs is $35. Bruce was an educational psychologist at Stanford University helping people with chronic illnesses before he developed chronic fatigue syndrome/fibromyalgia. His web-based classes require reading two chapters from a course book each week and answering questions for homework assignments. Examples might be: Give five situations when you have over-exerted yourself and could have triggered a flare in the past two months; or, list three things that your spouse does that frustrates you. Everyone in the course emails Bruce their answers, and then he hosts a chat group on the Web each week. Patients learn how other people are dealing with similar issues. Participants must be willing to commit three hours per week to the course, which is fully outlined at Carol Beals, M.D. Rheumatolgist in Lansing, MI I have fibromyalgia patients come in for a target visit when they sense their symptoms are getting worse. I look at their diet, sleep cycle, work and home stress, and their medication. If they are extremely tired, I will order blood tests to measure their vitamin B1 and B6 levels, as well as their “total” and “free” carnitine levels. Carnitine and the B vitamins are important for helping the cells make fuel. More than 50% of the time, I find low B vitamin levels are the reason patients are so fatigued. I have my patients take a B-complex with 100 mg of B1 and 100 mg of B6. Oral supplements work rather quickly and there is no need to administer expensive IV preparations. Carnitine is often low as well, so I supplement this energy nutrient with a Carnitor, a prescription medication. Patients take 330 mg three times a day, and it helps immensely with their energy levels. It’s available as a generic and most insurance companies will pay for it with the diagnosis of fatigue. Patients can get carnitine over-the-counter, but you never know how much carnitine they really contain, so prefer to use Carnitor (instead of acetyl-L-carnitine). I recheck the B-vitamins and carnitine levels two to three months later, and if they are normal I discontinue the supplements. With regards to diet, I recommend eating a small amount of protein three or four times a day. Protein gives people more energy and helps them stay away from sugar. I urge my patients to steer clear of processed sugar, excessive caffeine (no more than two colas a day), and aspartame, an artificial sweetener. Aspartame directly stimulates the receptors in the spinal cord to produce pain, which is why I ask patients to avoid Equal and NutraSweet, along with the many diet colas containing this sweetener (Splenda and Sweet ’N Low are okay). I provide my patients with a one-page sheet of stretching exercises they can do at home. I advise them to do no more than five minutes per session once or twice a day until they notice symptom improvements. It is better for them to do five minutes and be successful than to try 30 minutes and not be able to reach that goal. During the target visit, I help patients identify new or increasing stressors that could be contributing to their decline. They may be more tired and achy, and have no energy. Often, there is a reason, such as their child was sick, a husband lost his job, they took a trip, or they did something to over-exert themselves. I ask them when their symptoms started to flare, and then I take out the calendar to find out what happened during the week prior to the onset of the severe symptoms. Almost always, I can find a triggering event. Once we can determine what set off their symptom flare-up, they know they are not crazy and something can be done to turn their symptoms around. Next, I go over the various ways to control pain. Four different types of medications can be used, and I prescribe them in small quantities because fibromyalgia patients cannot tolerate drugs very well. I may use a low dose of an antidepressant, an anti-epileptic drug, a sleep agent, and sometimes a mild pain medication. When I use all of them, I can intercept the pain four different ways. The patient usually gets relief and allows them to get out of their painful flare-up. There are several other methods I use to turn a patient around who is having too many down days and stuck in a rut. However, when I bring a patient in for a target visit, together we can always think of something that will help improve their situation. Still Struggling with Pain? Lapp and Beals address common reasons that may prevent you from improving despite valid efforts by you and your doctor. Yet, if the pain or tight, knotted muscles are still nagging you, check out the two sample articles: A Neurologist’s Approach and Muscle Relaxants. In addition, enter your email address into the right-hand box underneath the print button to receive another free article, Peeling the Layers of Your Pain. -------------------------------------------------------------------------------- Tests •Vitamins B1 and B6 blood levels •Carnitine (total and free blood levels) •Thyroid function: T3, T4 and, auto-antibodies (especially if the thyroid gland in the neck is tender or enlarged) •Adrenal function: measure saliva cortisol throughout the day •Lyme disease antibodies (especially with a history of a skin bite) •Look for infections: gums/teeth and other sources -------------------------------------------------------------------------------- Treatments •Carnitor: 330 mg three times per day (if tests show low carnitine) •B-complex: 100 mg each of B1 and B6 (if tests show low levels) •Thyroid hormone: T4 (such as Synthroid) or T3 (such as Cytomel or Armour) •Hydrocortisone: take a small dose in the morning and at noon (total dose not exceeding 15 mg/day) -------------------------------------------------------------------------------- Self-Help •Eat small amounts of protein throughout the day to provide energy and reduce sugar craving •Minimize caffeine and foods loaded with processed sugar •Avoid Aspartame (Equal, NutraSweet, and many diet drinks) •Add at least two rest periods to your day until you begin to feel better •Stretch for five minutes of each day until you are able to be more active (this will reduce muscle stiffness and the development of painful knots) •Identify the trigger that set off your flare-up by looking at events one week prior getting worse •Inquire about the web-based classes at •Seek out compassionate, knowledgeable providers to treat your fibromyalgia-related symptoms (see instructions on how to receive a list of healthcare providers in your area in our Coping Resources section) Get reliable, patient-focused advice and input from the treatment experts when you become a Member of the Fibromyalgia Network. Use Promo Code 604 when you join and get your first issue free!

Flu Shots: Yes or No for Fibromyalgia & Chronic Fatigue Syndrome?

Flu Shots: Yes or No for Fibromyalgia & Chronic Fatigue Syndrome? By Adrienne Dellwo, Guide November 7, 2012 Fibromyalgia (FMS) and chronic fatigue syndrome (ME/CFS) involve dysfunctional immune systems. The flu can be especially hard on us. So we should get flu shots, right? You didn't expect an easy answer, did you? With FMS & ME/CFS, it's never simple. The flu shot contains dead flu virus, and while most people's immune systems do just fine with that, many of us do not. Some leading experts in our illnesses, and especially ME/CFS, caution against flu shots. They say the risk is too great that it'll make your symptoms significantly worse, possibly for months. Other say we should get the vaccine because if we get the flu we'll get especially sick and take a long time to recover. That leaves us in a quandry. Who is right? How do we know how we'll react? Which route is safer? I didn't used to get flu shots. I've never had a bona fide case of the flu and I'd never, as an adult, been vaccinated. FMS is different for everyone, and in my case, it caused very little immune dysfunction. Therefore, for my first few years of being sick, I didn't get the shot. However, then there was the whole "swine flu" scare, and I got it because I had young children and had developed an autoimmune disease (Hashimoto's autoimmune thyroiditis). I didn't have any problems, so I've gotten one every year since. Again, my immune dysfunction is mild. The vaccine is much harder on some people. It's a bit of a gamble, really - do you risk a symptom flare by getting the shot, or risk a potentially devastating illness by not getting it? We have to consider a lot of factors, such as: 1.How likely are you to get the flu? 2.Have you had reactions to flu vaccines in the past? 3.Do you have other illnesses that put you at risk of the flu? (These include autoimmunity, diabetes, COPD/emphysema and heart disease In the end, it's a personal decision. I'd love to hear what decision you make and your reasons for it, so leave a comment below! (This topic can get heated, so please do NOT criticize or second-guess other people's decisions. This is about sharing information in a safe and open environment.) Darla's Comment: I get the flu shot every year, but it doesn't prevent me from getting some type of flu's. But it does prevent me from getting sick all the time. Check with your doctor so that you can get his/her opnion on what is best for you.

Fibromyalgia Awareness Day May 12, 2013

Fibromyalgia Awareness Day May 12, 2013
Let us all be VISIBLE! May 12, 2013

Akemi Collection by Darla