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Low-Dose Naltrexone (LDN)
- From: geekygranny
- Description:
  
  What LDN Is:
  Naltrexone¹ is a drug that, at a normal dose of 50 to 100 mg, blocks the effects of opiods.
  At very low doses, however, some researchers believe the drug may be beneficial in people with fibromyalgia² and chronic fatigue syndrome³; autoimmune/inflammatory diseases, including multiple sclerosis and Crohn's disease; and other immune-related diseases, like HIV/AIDS.
  LDN is an inexpensive drug that's already on the market, which has fueled excitement about its possible uses.
  How LDN Works:
  Researchers don't yet understand the drug's exact mechanism of action. Some researchers theorize that LDN blocks certain receptors in the nervous system that cause symptoms of fibromyalgia and chronic fatigue syndrome. It's also believed to reverse inflammation.
  LDN for Fibromyalgia:
  A Standford University pilot study tested LDN on 10 women with fibromyalgia. LDN appeared to improve pain thresholds (the point at which sensation becomes pain) and lower overall symptoms. Stanford is now preparing larger studies on LDN for fibromyalgia (in adults) and juvenile fibromyalgia.
  While this is the first study of LDN for fibromyalgia, the drug has been prescribed off-label for several years.
  LDN for Chronic Fatigue Syndrome:
  So far, LDN has not been studied for chronic fatigue syndrome. However, some doctors and patients say they've used LDN successfully. As with fibromyalgia, LDN is sometimes prescribed off-label for chronic fatigue syndrome.
  LDN Dosage:
  For use in treating fibromyalgia or chronic fatigue syndrome, naltrexone is generally given in doses of 5mg or less.
  LDN Side Effects:
  While LDN appears to be well-tolerated, known side effects of naltrexone include:
  - Dizziness & syncope (fainting)
  - Headache
  - Insomnia
  - Anxiety & nervousness
  - Sleepiness & fatigue
  - Nausea, vomiting, diarrhea, abdominal pain/cramping, decreased appetite
  - Injection site pain & swelling
  - Joint pain
  - Excessive muscle contraction
  - Upper respiratory tract infection
  - Sore throat
  In the Standford study, side effects were reported as rare, mild and transient.
  People with kidney or liver disease may need special tests or dosages to safely take LDN. This drug may be harmful to an unborn baby. It not known whether LDN passes into breast milk.
  _Sources:
  _{Pain medicine. 2009 Apr 22. (Epub ahead of print) "Fibromyalgia Symptoms Are Reduced by Low-Dose Naltrexone: A Pilot Study."⁴}
  _{Stanford University School of Medicine. "Low Dose Naltrexone for the Treatment of Fibromyalgia"⁵}
  Links in this article:
  1. http://drugsaz.about.com/od/drugs/naltrexone.htm
  2. http://chronicfatigue.about.com/od/whatisfibromyalgia/a/what_is_fms.htm
  3. http://chronicfatigue.about.com/od/whatischronicfatigue/a/what_is_CFS.htm
  4. http://www.ncbi.nlm.nih.gov/pubmed/19453963?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum
  5. http://snapl.stanford.edu/ldn/
- Blog post
- 5 months ago
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mzarletta
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- Since: 7 months ago
Fibromyalgia Spectrum
- From: geekygranny
- Description:
  
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  The Fibromyalgia Spectrum - Part of the Big Picture in Understanding Fibromyalgia
  by Mark J. Pellegrino, MD
  August 4, 2007
  This article is excerpted with permission from Dr. Mark J. Pellegrino's highly praised book, Fibromyalgia: Up Close and Personal.*
  Dr. Pellegrino, an international leader in FM treatment and himself an FM patient since childhood, hosted a Live Chat Q&A Sep 19, 2008 in the ProHealth Community Chat Room. To read the script of that Q&A, click here.
  ________________
  As a senior resident at The Ohio State University in 1988, I gave a lecture on Fibromyalgia at the Physical Medicine Grand Rounds. One of my lecture slides was entitled “Fibromyalgia, A Spectrum of Conditions?”
  I discussed how Fibromyalgia appears to be a “broader” condition with specific subsets. Fibromyalgia was in that area between normal and disease – the “gray” area.
  Some of the subsets were closer to normal, involving regional pain only, or milder symptoms without numerous associated conditions. Some subsets were closer to abnormal, with some features of connective tissue or rheumatic diseases, but were not quite “there.”
  Today I’m convinced Fibromyalgia is indeed a “broader” condition with various subsets. I believe this information is helpful in explaining why everyone’s symptoms are different even though they all have Fibromyalgia. This chapter addresses how the Fibromyalgia spectrum is part of the big picture in understanding Fibromyalgia.
  Fibromyalgia Is a Distinct Medical
  Entity, and Appropriately So
  We have long recognized, however, that many conditions overlap it, and various conditions exist that can lead to secondary Fibromyalgia. Dr. Muhammad Yunus, MD, [a professor and FM specialist at the University of Illinois College of Medicine] has developed the concept of Dysregulation Spectrum Syndrome (DSS) to describe how conditions overlap.¹
  Dr. Yunus describes DSS as representing various associated conditions that share similar clinical characteristics and pathologic mechanisms with Fibromyalgia. Ten conditions are in the DSS umbrella: Fibromyalgia, Chronic Fatigue Syndrome, Irritable Bowel Syndrome, tension headaches, migraine headaches, primary dysmenorrhea, periodic limb movement disorder, restless leg syndrome, temporomandibular pain syndrome, and myofascial pain syndrome. He predicts other entities will be added to this list in the future.
  According to Dr. Yunus, Conditions in DSS
  Share a Number of Characteristics:
  1. Patients with different conditions sharing similar profiles.
  2. Common shared symptoms, such as pain, poor sleep, fatigue, and female predominance.
  3. Hypersensitivity to pain.
  4. No “diagnostic” pathology that can be measured.
  5. Shared psychological complaints such as depression and anxiety.
  6. Shared common genetic factor likely.
  7. Common neurohormonal dysfunctions.
  8. Treatments directed at the central nervous system leading to improvement.
  9. TMJ [temporomandibular joint] dysfunction.
  I have discussed the Fibromyalgia spectrum with my patients to help them understand the various subsets possible. I do not see Fibromyalgia as a member of a bigger family, but as the main condition. It is the “founding father” and keeps its name. If Fibromyalgia is the founding father, then the various overlapping conditions and subsets become the children. The name Fibromyalgia remains, but different subsets have unique characteristics and together they become the Fibromyalgia spectrum.
  This diagram shows the concept of the Fibromyalgia spectrum. The Fibromyalgia entity partially overlaps with the normal entity on one side and the disease entity on the other side. Within the Fibromyalgia entity are 8 subsets. The first subset is in the most “normal” portion of Fibromyalgia, and the 8th subset is in the most “diseased” portion of Fibromyalgia. Each number represents a distinct subset with distinct characteristics.
  
  The Eight Subsets of the
  Fibromyalgia Spectrum Are:
  1. Predisposed state
  2. Prodromal [preceding] state
  3. Undiagnosed Fibromyalgia
  4. Regional Fibromyalgia
  5. Generalized Fibromyalgia
  6. Fibromyalgia with particular associated conditions
  7. Fibromyalgia with coexisting mild disease
  8. Secondary Fibromyalgia reactive to disease.
  An individual can move up this spectrum – from a lower numbered subset to a higher numbered subset, but once in a particular subset, she/he does not return to a lower numbered subset. One can achieve a remission, but stays in that subset.
  In other words, there is no going back. Let’s review the features of each subset.
  Subset 1: Predisposed State
  The individual is asymptomatic. Clinical Fibromyalgia is not present in this state.
  The individual is at risk for developing Fibromyalgia due to hereditary factors, which may include one or both parents with Fibromyalgia or a rheumatic/connective tissue disease, or a sibling or first-degree relative with Fibromyalgia.
  Subset 2: Prodromal State
  Prodromal means preceding, or the state leading to the condition. Clinical Fibromyalgia is still not present. There is no widespread pain or painful tender points.
  The individual is not asymptomatic, however. Associated conditions common with Fibromyalgia may be present in this stage, such as headaches, restless leg syndrome, fatigue, or irritable bowel syndrome. Pain may be present at times, but intermittently (not chronic, persistent pains). Even though the individual may have one or more associated condition(s), widespread persistent pain is not present, so therefore Fibromyalgia is not yet present.
  Typical Fibromyalgia pain must be present before we can diagnose clinical Fibromyalgia, no matter how many associated conditions may be present, but those who have numerous associated conditions are at risk.
  Subset 3: Undiagnosed Fibromyalgia
  Chronic pain is now present, either regional or generalized in nature. This is the point of no return. The person has painful tender points which may or may not meet the American College of Rheumatology-defined 11 of 18 criteria.
  The person in this stage usually has milder symptoms and has not yet seen a doctor or been officially diagnosed with Fibromyalgia. If this individual were to see a knowledgeable physician, that diagnosis would be made.
  Subset 4: Regional Fibromyalgia
  Individuals in this stage have been diagnosed with Fibromyalgia, but not generalized. Chronic pain is limited to one or a few areas such as the upper body or the low back. The symptoms may wax and wane.
  Usually, this subset is triggered by a trauma. I believe myofascial pain syndrome is part of this regional Fibromyalgia, and both terms are essentially synonymous. Myofascial pain syndrome has become familiar through the work of the late Dr. Janet Travell, MD, and Dr. David Simons, MD.2
  Myofascial pain syndrome is defined by painful muscles and the presence of triggerpoints and taut bands of muscle fibers which are ropey and painful when palpated. An involuntary shortening of the fibrous muscle band can create a local twitch response.
  Some of those who work with myofascial pain syndrome will argue that it is a separate distinct entity from Fibromyalgia. I disagree. The similarities between myofascial pain syndrome and Fibromyalgia are far greater than their differences. They both have trigger points, tender points, ropey muscles, sympathetic nerve dysfunction, ATP abnormalities, peripheral and central mechanisms, regional and generalized versions, and associated conditions. Sound familiar? The treatments are essentially the same.
  As our clinical experience has evolved and our knowledge and research have become more refined, I think it is clear that myofascial pain syndrome is a part of the overall Fibromyalgia spectrum.
  Individuals with regional Fibromyalgia, over time, often develop generalized Fibromyalgia. Or they can remain in this stage indefinitely. Identifying the regional stage early and treating it can definitely help to prevent progression.
  Subset 5: Generalized Fibromyalgia
  Individuals in this stage have widespread pain and tender points. They will usually meet the American College of Rheumatology-defined 11 of 18 criteria, but as previously explained, one can still have generalized Fibromyalgia with fewer tender points.
  Various associated conditions seen with Fibromyalgia can be present – sleep disorder, irritable bowel syndrome, depression, fatigue, and so on. These associated conditions are not taking on a life of their own, so to speak, but are part of the whole and managed with the overall Fibromyalgia treatment.
  Regional Fibromyalgia can progress to this subset. Various causes of generalized Fibromyalgia include genetic factors, trauma, infections, and more, but secondary Fibromyalgia from a primary disease is not included in this subset.
  Subset 6: Fibromyalgia with Particular Associated Conditions
  People in this group have developed associated conditions that are giving them particular problems which appear as “separate” entities requiring separate attention. Some of these particular associated conditions include irritable bowel syndrome, chronic fatigue syndrome [ME/CFS], fatigue, tension/migraine headaches, and depression. None of these conditions in themselves have “classic” disease laboratory markers or cause tissue destruction, yet they may require treatments in addition to the overall Fibromyalgia treatment.
  Another associated condition is dysautonomia (dysfunction of the small nerves), which can cause abnormalities such as hypoglycemia [low blood sugar], hypotension [low blood pressure], cardiac arrhythmia, irritable bowel syndrome, and vascular headaches.
  Subset 7: Fibromyalgia with Coexisting Disease
  Individuals in this category have a specific disease, and also have Fibromyalgia. The disease doesn’t necessarily cause Fibromyalgia, but can aggravate it if it’s already present. Examples of diseases that can be present and worsen the Fibromyalgia symptoms include:
  n Hormonal problems (hypothyroidism, low estrogen, low growth hormone, and low cortisol)
  n Infectious problems (yeast, parasite or viral infections).
  n Low grade rheumatic or connective tissue disease (lupus, autoimmune disorders, dry eyes syndrome described by Dr. Don Goldenberg, MD, [Chief of Rheumatology at Newton-Wellesley Hospital and Professor of Medicine at Tufts University School of Medicine] may be part of a low grade Sjogren’s syndrome).
  n Arthritic conditions (cervical spinal stenosis, osteoarthritis, osteoporosis, scoliosis).
  n Neurological conditions (multiple sclerosis, polio sequelae, neuropathy, head injury residuals). For example, people who have both diabetes and Fibromyalgia will often have more painful Fibromyalgia because the diabetes caused the nerves to be more sensitive. Diabetes is a common cause of neuropathy, or damage to the small nerves, which is painful in itself and even more so with Fibromyalgia. One needs to keep the diabetes under good control to help the pain.
  n Lung conditions. I see a number of people who have Fibromyalgia along with a lung problem such as emphysema, asthma, chronic bronchitis, or heavy tobacco use. Cigarette smoking can increase Fibromyalgia pain. The nicotine in the smoke causes constriction of the blood vessels, decreasing blood flow, oxygen, and nutrients to the muscles, thereby increasing pain and spasms. Also, carbon monoxide in smoke enters the bloodstream and binds to the hemoglobin molecules in the blood. this blocks oxygen from binding to the hemoglobin, further decreasing oxygen availability to the muscles (and increasing pain). Stop smoking and your muscles will feel better!
  These diseases exist concurrently with Fibromyalgia but probably do not cause it. Any of these diseases can progress from a mild to a more severe state, and Fibromyalgia worsens as the disease worsens. The physician determines if the disease is coexisting with and aggravating Fibromyalgia (subset 7), or if a disease caused the Fibromyalgia (subset 8).
  Subset 8: Secondary Fibromyalgia Reactive to Disease
  Individuals in this category have secondary Fibromyalgia. They have a primary disease (for example lupus, rheumatoid arthritis) - and Fibromyalgia developed as a result of this disease.
  People in this subset probably wouldn’t have Fibromyalgia if they never had the primary disease. The primary disease requires treatment, and Fibromyalgia may improve with this treatment. However, the Fibromyalgia often requires its own treatment, and can continue to be a major problem even when the primary disease is treated or is in remission.
  Overall - A Useful Explanatory Model
  I find that the Fibromyalgia spectrum provides a useful clinical model for me when evaluating and treating my patients. It helps me to “organize” them better! When I diagnose Fibromyalgia, I try to be as specific as possible about what the cause is and what subset it fits. This helps me to better explain Fibromyalgia to the patients and to individualize their treatment programs.
  Of course, if I’ve diagnosed Fibromyalgia it would be subset 4 or greater. The patient wouldn’t be seeking a medical consultation for subsets 3, 2, or 1. If possible, I note the cause. Each subset can have flare-ups or remissions within it, and I note that as well, if appropriate.
  Subsets 1, 2, and 3 [predisposed state, prodromal state, undiagnosed Fibromyalgia] are useful in appreciating the progression of Fibromyalgia through the spectrum, and can be helpful when advising patients and family members who have specific concerns and questions.
  Let’s Review Some Patient Profiles to Determine the
  Subset they Fit into in the Fibromyalgia Spectrum
  Patient #1
  Mary is a 25-year-old receptionist with severe neck and shoulder pain. She had always been very active with aerobics and bicycling and had never had any pain requiring treatment until after a motor vehicle accident… when she was rear-ended and suffered a whiplash injury. The pain never went away, and when I saw her I found numerous painful tender points and trigger points with localized spasms in the neck and shoulder muscles.
  Mary has regional Fibromyalgia (subset 4). She was most likely predisposed to Fibromyalgia, and a traumatic event triggered the development of her regional Fibromyalgia. She “leaped” from predisposed state (subset 1) to regional Fibromyalgia (subset 4).
  Patient #2
  Martha is a 30-year-old housewife. She was diagnosed with Fibromyalgia 5 years ago, and she was at a stable baseline with her home program of stretches, exercises, and using a hot tub.
  In the past year, she has been having increasing pain and fatigue, and difficulty managing her Fibromyalgia. She reports that in the past year she has been getting frequent yeast infections. She is on birth control pills and has had a couple of bladder infections requiring antibiotics in the past year. Her more recent history is otherwise unremarkable.
  Martha has Fibromyalgia with a coexisting disease - chronic yeast infection (subset 7). Her birth control pills, antibiotic treatment, and perhaps Fibromyalgia have contributed to the chronic yeast infection. In turn, the yeast infection has aggravated her Fibromyalgia. [See also Dr. Pellegrino’s explanation of “Candidiasis – Yeast Infection and Nutritional Repair.” ]
  Patient #3
  Jamie is a 38-year-old school teacher. She has lupus, diagnosed when she was 13 years old, and has been on various medications since then.
  She has been in remission for a number of years, but has developed widespread pain. Her sedimentation rate is not elevated to suggest active inflammation. Her clinical exam does not reveal any joint inflammation or active lupus findings, but she does have 16 of 18 painful tender points.
  Jamie has secondary Fibromyalgia from a disease (subset 8). In her case, the lupus is in remission, but her Fibromyalgia is causing her problems and needs to be treated.
  Patient #4
  Jamie’s 12-year-old son has been complaining of leg pains. The pains occur at nighttime, and Jamie has to rub the legs and use warm compresses. The pediatrician told her his pains were growing pains. Jamie’s son gets occasional headaches, and sometimes he feels exhausted. He plays many sports, and if he works out a lot his muscles are very sore for several days. On exam, there are no areas of pain or painful tender points.
  Jamie’s son is probably in a prodromal state (subset 2). He is at risk because his mother has Fibromyalgia and a connective tissue disease, and he has some associated conditions with intermittent pains, but has not developed the persistent widespread pain or painful tender points yet.
  Patient #5
  Bob is 42 years old and has an awful lot of pain for his age. His pains are more severe than everyday pain, and sometimes he has had to miss work. He is an assembly line worker. He mentions this to his primary care doctor when he is there for his yearly physical. He is examined and found to have 12 of 18 positive painful tender points.
  Bob had undiagnosed Fibromyalgia (subset 3) until he became official, “entering the books” with generalized Fibromyalgia (subset 5) after he saw his primary care doctor.
  In Conclusion
  There is much disagreement and controversy among medical professionals and patients about categories and subsets of Fibromyalgia or similar conditions. I'm not attempting to stir the waters with my version of the Fibromyalgia spectrum - rather I'm trying to help you understand the fairly complicated nature of the condition and the different types I see. I find this model useful and practical in my everyday clinical practice. Remember one of my mottos: Keep things as simple as possible and make sure they make sense!
- Blog post
- 8 months ago
- Views: 229
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Fibromyalgia syndrome in an Am
- From: geekygranny
- Description:
  
  Friday, August 1, 2003
  J Rheumatol. 2003 Aug;30(8):1835-40.
  White KP, Thompson J.
  OBJECTIVES: To estimate the point prevalence of fibromyalgia syndrome (FM) in Amish adults and to compare the prevalence of chronic pain, chronic widespread pain, FM, chronic fatigue, and debilitating fatigue in the Amish versus non-Amish rural and urban controls. The a priori assumption was that, if litigation and/or compensation availability have major effects on FM prevalence, then FM prevalence in the Amish should approach zero.
  METHODS: We surveyed 242 Amish adults in a small rural community southeast of London, Ontario, Canada. Individuals were screened using a validated screening instrument. Those reporting chronic, widespread pain were examined for FM using published classification criteria. Amish results were compared to results collected in a random telephone survey of 492 non-Amish adults living in rural Southwestern Ontario and 3395 non-Amish adults previously surveyed in London.
  RESULTS: Pain lasting at least one week in the preceding 3 months was reported by 34.3% of the Amish; pain in the upper extremities by 25.4%, in the lower extremities by 22.5%, and in the trunk by 28.1%. Twenty-six (15 women, 11 men) reported chronic, widespread pain. Eleven FM cases were confirmed among women (age adjusted point prevalence, p = 10.4%) and 2 among men (p = 3.7%) for an overall age and sex adjusted prevalence of 7.3% (95% CI 5.3, 9.7); this was both statistically greater than zero (p < 0.0001) and greater than in either control population (both p < 0.05).
  CONCLUSION: FM is relatively common among the Amish.
  
  O24Fibromyalgia -- a PROVEN pain relief product for Fibro. Order yours today at ZoneO24!!
  
  Be peace,
  Mary :o) aka GG
  
  ~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~* ~*~*~*~*~*~*~*~*~
  Earth is my home and animals are my family. Life is my religion and love is my example. Peace and freedom belong to us all.
- Blog post
- 1 year ago
- Views: 151
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Neurotransmitters in Fibromyal
- From: geekygranny
- Description:
  
  What's Going On in Your Brain?
  
  By Adrienne Dellwo, About.com
  
  Updated: September 3, 2008
  
  About.com Health's Disease and Condition content is reviewed by Kate Grossman, MD
  Fibromyalgia ¹ (FMS) and chronic fatigue syndrome ² (CFS or ME/CFS ³) long remained mysteries to medical science, and we're just now getting a picture of what's going on in the body, and especially the brains, of people with these conditions. One thing that research has shown, time and time again, is that when you have FMS or ME/CFS, your neurotransmitters are out of whack.
  
  Neurotransmitters: What They Are & What They Do
  
  Your brain is made of of billions of cells called neurons that communicate with each other to control everything that goes on in your body. Communication between neurons relies on chemicals called neurotransmitters, which create and control signals. Every time you feel an itch, hear a noise, or experience an emotion, neurotransmitters are responsible. In addition, they tell your heart to beat, your lungs to breathe, and your stomach to produce digestive enzymes.
  
  Each bodily function and emotion is linked to the operations of specific neurotransmitters. When your levels of a particular neurotransmitter are too high or too low, things can start to malfunction. FMS and ME/CFS have been associated with irregular levels of several neurotransmitters, including:
  
  Serotonin (the sleep cycle, pain processing, body temperature, appetite, sex drive, mood)
  
  Norepinephrine ("fight or flight" response, alertness, memory)
  
  Dopamine (mental focus, movement disorders, motivation)
  
  A lot of treatment research has focused on how to regulate these neurotransmitters in order to alleviate the symptoms of FMS and ME/CFS. So far, experts don't know why neurotransmitter levels are abnormal in these conditions, but we do know they're responsible for a host of symptoms.
  
  The measurement of neurotransmitter levels is complex and still only takes place in the research setting. Most labs don't perform such tests and most insurance companies wouldn't cover them. Doctors typically suspect neurotransmitter abnormalities based on symptoms, which is one of many reasons you may want to keep a symptom diary ⁴.
  
  Options for regulating your neurotransmitter levels include:
  
  Prescription medications
  
  Dietary supplements
  
  Your diet
  
  Lifestyle changes, including sleep and exercise habits
  
  Learn more about these neurotransmitters, including the symptoms associated with each of them and how they're treated:
  
  Serotonin Dysregulation: Symptoms & Treatment Options ⁵
  
  Not Enough Norepinephrine: What It Does & What to Do About It ⁶
  
  Low Dopamine: How It Makes You Feel & How to Fix It ⁷
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  O24Fibromyalgia -- a PROVEN pain relief product for Fibro. Order yours today at ZoneO24 !!
  
  Be peace,
  
  Mary :o) aka GG
  
  ~*~*~*~*~*~*~*~*~*~*~*~*~* ~*~*~*~*~*~*~* ~*~*~*~*~*~*~*~*~
  Earth is my home and animals are my family. Life is my religion and love is my example. Peace and freedom belong to us all.
- Blog post
- 1 year ago
- Views: 241
- Not yet rated
Fibromyalgia & Chronic Fatigue
- From: geekygranny
- Description:
  
  By Adrienne Dellwo , About.com Guide to Fibromyalgia & CFS
  
  Sunday August 10, 2008
  
  Harvard researchers say they've taken skin and bone marrow cells from people with several genetic diseases and turned them into stem cells. They say this could really help them understand how illnesses like Parkinson's and ALS (Lou Gehrig's disease) work and, hopefully, lead to better treatments.
  
  So why do I care about this? Because as we learn more about fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS), we see that they have a lot in common with the poorly understood neurological diseases these researchers are trying to lock. We already know that people with Gulf War syndrome, which is incredibly similar to FMS and ME/CFS, have the same genetic mutation that can lead to ALS. (Note: In Gulf War syndrome, it takes the genetic mutation combined with exposure to certain chemicals to trigger the condition, much like a genetic predisposition combined with certain viruses or other stressors may lead to FMS and ME/CFS.)
  
  My belief is that the more researchers know about Parkinson's and ALS, the sooner they'll be able to unravel the mysteries of our illnesses. FMS and ME/CFS researchers can learn from any developments stemming from the stem cell lines and possibly use it to speed up their own research. Maybe this will help show why common viruses trigger ME/CFS in some people, or why some people (including me) develop FMS after enduring periods of high physical and emotional stress.
  
  What do you think? Is this a big step forward or a false start? Are researchers looking in the right direction?
  
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- Blog post
- 1 year ago
- Views: 207
joytobefreee
- Views: 93
- Since: 1 year ago
About Fibromylagia treatment-H
- From: april
- Description:
  
  Dr. Teitelbaum is a world-reknown researcher for Fibromyalgia and Chronic
  
  Fatigue Syndrome and has a website with a free newsletter and you can ask him free
  
  questions-go to www.vitality101.com Blessings from a new member here-April- I
  
  have sufferred with Fibromyalgia and chronic fatigue since November 2002. I like
  
  the networking! It may help! Blessings to all of you!!! April
- 1 year ago
- Views: 0
- Forum: Fibromaylgi...
april
- Views: 113
- Since: 1 year ago
Fibromyalgia - Ultimately a Di
- From: geekygranny
- Description:
  
  by Mark J. Pellegrino, MD
  ImmuneSupport.com>
  
  05-26-2008 Excerpted with permission from Chapter 9 of Dr. Mark Pellegrino’s very popular book, Fibromyalgia: Up Close and Personal .* Dr. Pellegrino has seen more than 20,000 FM patients in his practice at the Ohio Rehab Center, and has been a Fibromyalgia patient himself since childhood.
  Many conditions can lead to permanent changes in the pain transmission mechanism and result in chronic pain that overwhelms the body’s pain defense mechanisms. One such condition is Fibromyalgia.
  
  Fibromyalgia may not cause destruction along the pain pathways as other conditions I have mentioned can [rheumatoid arthritis, carpal tunnel syndrome, shingles, multiple sclerosis, for example]. However, Fibromyalgia does cause chronic abnormal changes along all the pathway components and this results in chronic pain via both peripheral (from skin, muscles and nerves) and central (from spinal cord and brain) neurological mechanisms.
  
  The end result of Fibromyalgia’s abnormal changes appears to be a state of pain amplification that cause severe generalized pain. Fibromyalgia is ultimately a disease of amplified pain.
  
  Dr. Robert Bennett has written and presented excellent information that explains why we hurt with Fibromyalgia (e.g., “Emerging Concepts in the Neurobiology of Chronic Pain: Evidence of Abnormal Sensory Processing in Fibromyalgia,” Mayo Clinic Proceedings ). If we trace the pain signals through the various parts of the pain pathway (from the nociceptors - or specialized pain nerve endings – to the nerves to the spinal cord to the brain) in people with Fibromyalgia, we find various abnormalities along the way. Many studies have shed light on different points along the complete pain pathway.
  
  I want to briefly summarize some of these different abnormalities and possible problems encountered by Fibromyalgia pain signals on the path to the brain.
  
  NOCICEPTORS - Pain originates from the nociceptors
  
  Trauma is a common trigger of Fibromyalgia. Tissue injury - damage to the muscles and soft tissues – activates the nociceptors. Some studies have suggested that microscopic injury occurs in specific parts of the muscles (for those who want the medical names: muscle spindles, intrafusal fibers, and calcium pumps).
  
  Localized tissue injury probably activates arachidonic acid (a biological protein), which turns into “bad” prostaglandans (called Cox-II prostaglandins), and cause inflammation and pain.
  
  In addition to trauma, autoimmune factors may be another pain nerve activator. Perhaps autoimmune processes create compounds which act as irritants and activate the nociceptors chronically to the point where they become “permanently” sensitized and irritated. As a result, biochemical, hormonal, and red blood cell changes occur that interfere with the cells’ ability to receive adequate supplies of oxygen, glucose, and other nutrients. Blood flow, energy formation, and the cells’ electrical and neurological harmonies are all disrupted.
  
  Since the nociceptors remain “faulty,” the electrical and neurological balance remains abnormal, and nociceptors continue to be activated. Pain-producing neurotransmitters are released and accumulate as long as the nociceptors stay activated at the peripheral level (skin and muscles, especially).
  
  These persistent pain signals we experience may be interpreted as an itching, burning, swelling, or tingling at one end of the spectrum, or – at the other end – knife-stabbing, burning, or throbbing. One nociceptor can signal different pain signals and sensations depending on its level of irritation – the more irritated it is, the more severe the pain.
  
  These changes can become permanent and cause the nerves to become sensitized to the point where they are easily activated to send pain, even in the absence of any noxious stimulus.
  
  In other words, persistent pain signals can spontaneously arise from peripheral nerve endings and bombard the rest of the pain pathway. So, instead of waiting for outside stimulation such as trauma, pressure, temperature, or touch to signal the nociceptors, these nociceptors send pain signals on their own, without any outside help. This “spontaneous” pain is what we complain about the most!
  
  NERVES
  
  The nerves, especially the sensory nerves and the autonomic nerves, “wonder what is happening” because they are getting bombarded by all of these signals from the nociceptors. At first, they try to diminish these painful signals by using accommodation and gate mechanisms.
  
  However, the signals persist and they, too, undergo a sensitization process. They become hypersensitized and react with an exaggerated response instead of a normal or diminishing response (accommodation). Now we get even more pain, numbness, swelling, burning, and other sensations.
  
  Some of the hypersensitization may be mediated by nerve growth factor, which has been found in higher levels in Fibromyalgia. A high nerve growth factor may indicate the nerves are trying to regenerate or repair themselves. But instead of repairing the nerves so they act normal again, the opposite seems to happen. Nerve growth factor is probably enhancing the nerves’ abilities to transmit pain to the spinal cord. More pain results, not less.
  
  SPINAL CORD – Amplification, wind-up, allodynia, Substance P, generalization
  
  At the spinal cord level, the Fibromyalgia begins to take control.
  
  It is here that additional changes occur to perpetuate the pain and spread it to different levels. When pain generators first start firing, the spinal cord pain processing centers may act at first like a dry sponge and easily soak up all the signals. Our bodies may have many pain generators at any given time, but if they are slowly and intermittently firing, drug sponges can soak up the signals and not cause any bothersome symptoms.
  
  From time to time there may be an acute exacerbation of a problem leading to a lot of pain signals being generated, and if a lot of pain signals are dumped at once into the spinal cord sponge, only a little bit gets absorbed and a lot gets passed through and perceived as acute pain.
  
  In Fibromyalgia, however, the different pain generators continue to send signals and eventually the dry sponges becomes a wet sponge and it can’t soak up any more. The additional oncoming continuous signals will spill over the wet sponge, and this leads to persistent pain.
  
  The two main changes that occur at the spinal cord include:
  - Pain amplification (by specialized nerves called NMDA receptors)
  - And loss of pain filtering (by the diffuse noxious inhibitory control system).
  Spinal cord nerves are bombarded by continuous stimulation from the peripheral nerves, causing a progressive increase in electrical signals to be sent up to the brain. This phenomenon is called “ wind-up ,” and is the neurological mechanism for the amplification of pain.
  
  Once this wind-up phenomenon occurs, a central sensitization results in which various types of sensory signals - not just pain - will arrive in the spinal cord, become amplified, and be sent to the brain as pain. The spinal cord becomes more sensitized to sending pain, lots of it. Once this happens, the spinal cord is not able to properly sort out and filter various sensory signals.
  
  As a result, different sensory signals such as touch, pressure, temperature, and joint movement all become amplified and sent up the pain pathways, resulting in pain signals instead of the appropriate touch, pressure, temperature, or joint motion signals.
  
  This defect in pain transmission where there is increased sensitivity to all stimuli – even those which normally do not evoke pain – is called allodynia . Unfortunately for the person with Fibromyalgia, the spinal cord is now “wired” to interpret nearly all sensory signals as pain – severe pain! We can still appreciate touch, pressure, temperature, joint movement, and other non-pain signals, but pain contaminates these signals, and we feel the pain.
  
  Another key change at the spinal cord level is an increased formation of Substance P and other neurotransmitters.
  
  Substance P’s primary role at the spinal cord level is to transmit pain signals and to sensitize the spinal cord so it is readily available to transmit pain. When Substance P reaches high concentrations (as it does in Fibromyalgia), it can migrate up and down the spinal cord, away from the initial location of the pain signal. As a result, multiple levels of the spinal cord undergo sensitization and send increased pain signals, leading to a “ generalization ” of the Fibromyalgia.
  
  This spreading of pain explains how one can develop generalized Fibromyalgia from an initial regional area of pain. A common example of this occurs following a motor vehicle accident where a particular body part, such as the neck, was injured. Over time, the pain begins to involve the mid-back, low back, and ultimately the whole body, even though these areas were never injured. The Substance P-induced spinal cord changes can explain this migration of pain from the neck to the entire body.
  
  BRAIN
  
  Our poor brains have no chance, do they? Any pain memory stored in the past will be re-awakened by this process. Fibromyalgia is notorious for causing previously injured areas to hurt more once it develops. This previously injured area may have settled down and become essentially pain-free, but the pain memories remained, although inactive. Thanks to the Fibromyalgia pain amplification process, the inactive memories are reactivated.
  
  The pain centers of our brain, the limbic system and the cerebral cortex, are continuously fed these amplified signals from the spinal cord. Changes occur:
  - Serotonin levels decrease,
  - Brain waves change,
  - Sleep stages are affected,
  - Blood flow and glucose [blood sugar] metabolism are affected.
  The brain gets overwhelmed with these pain signals and spends a lot of attention and energy monitoring the pain. Fibrofog occurs. Emotional components are “attached” to pain, including fear, depression, anxiety, anger, hopelessness, and helplessness, which can further amplify the pain.
  
  In patients with Fibromyalgia, functional reorganization ( brain plasticity ) in both sensory and motor portions of the brain has been observed, and appears directly related to the chronicity of the pain (Dr. H. Flor, 2003). These brain changes may be viewed as pain memories that influence how painful and non-painful signals affect the body’s sensory and motor responses. The brain makes these changes to enhance its ability to perceive pain – brain amplified pain.
  
  This type of abnormal brain plasticity can be measured. Doctors Richard H. Gracely, Richard A. Harris, Daniel J. Clauw, et al. at the University of Michigan Chronic Pain and Fatigue Research Center have published studies which demonstrated abnormal “hyperactive” areas of the brains and abnormal “quiet” areas of the brains in Fibromyalgia test subjects who underwent functional MRIs. This provides objective evidence to support brain plasticity with both hypersensitive amplified pain, and turning off the ability to inhibit pain.
  
  FIBROMYALGIA PAIN SUMMARY
  
  To summarize, Fibromyalgia changes our pain pathways. It may start off as a peripheral irritant, but eventually it becomes a self-perpetuating process that affects the entire pathway from the nociceptors to the brain. The main problem, in a nutshell, is amplified pain.
  
  The amplified pain is the result of our nervous system gaining the ability to magnify pain and losing the ability to inhibit pain. What comes in at a signal of a “1” does not end up in the brain as a signal of a “1” as it would in people without Fibromyalgia. Our pain signal of a “1” gets amplified and magnified, and by the time it reaches our brain, it is a “10”!
  
  Other non-painful signals get thrown into this pain amplification pathway and arrive at our brain as pain signals. Even tiny subconscious pain signals can get amplified, or the nerve pathways can automatically “fire away” without any obvious noxious stimulus to cause spontaneous pain.
  
  These are not your everyday aches and pains, these are severe pains that cannot be ignored. This severe, chronic pain can completely disrupt one’s life. And by the way, while all of this is happening, we continue to look completely normal on the outside.
  
  ___
  * Reproduced with permission from Fibromyalgia: Up Close & Personal by Mark J. Pellegrino, MD. © Anadem Publishing, Inc. (www.anadem.com) and Mark Pellegrino, MD, 2005, all rights reserved. This book may be purchased for $24.50 plus S&H from Dr. Mark J. Pellegrino at the Ohio Rehab Center (phone 330/498-9865 or fax 330/498-9869).
  
  Note: This information has not been evaluated by the FDA. It is not meant to prevent, diagnose, treat, or cure any illness or disease. It is very important that you make no change in your personal healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.
- Blog post
- 1 year ago
- Views: 199
Are Doctors Too Confident in T
- From: geekygranny
- Description:
  
  By Fibromyalgia and CFS • May 21st, 2008 •
  
  This tidbit of information probably wouldn’t surprise many of us who have fibromyalgia (FMS) or chronic fatigue syndrome (CFS or ME/CFS ) - according to a special edition of The American Journal of Medicine, doctors misdiagnose people about 15% of the time.
  
  I’d guess the rate is probably a lot higher for some ailments than for others, especially when you consider conditions that don’t come wrapped in neat little packages complete with reliable diagnostic tests.
  
  According the the AJM, many doctors simply don’t believe that their own error rate could be that high and pass the buck to “others who are less skillful or less careful.”
  
  The authors say it’s usually the cases doctors see as routine and unchallenging that are most often misdiagnosed, while with harder cases they’re more likely to seek out other opinions or use computerized diagnostic tools.
  
  As scary as this is, it makes sense. Any math teacher will tell you it’s the simple things like addition and subtraction that’ll trip their algebra students. It’s natural to pay less attention to something you feel like you’ve done a thousand times before.
  
  While the diagnostic error rate isn’t surprising to me (after all, I had a handful of misdiagnoses before my FMS was recognized), I wonder if we can use some of this information to our advantage.
  
  Look at it this way: how often do you suppose a doctor hears, “I’m tired all the time”? Constantly. The answer? “Get more sleep” or “Take this pill.”
  
  Maybe something more specific, such as “I’m exhausted as if I had the flu and it takes me 2 days to recover from even a little bit of exertion” would get their attention.
  
  For doctors who don’t believe in these diseases, probably nothing will help. For the better ones, though, maybe it just takes a few key words or phrases to get them out of a mental rut and make them think a little harder about what you’re saying.
  
  How many times have you been misdiagnosed? Take the poll, and share your stories here or in About.com’s Fibromyalgia & Chronic Fatigue Syndrome forum .
  
  Adrienne Dellwo
- Blog post
- 1 year ago
- Views: 136
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Julie S: My Story
- From: JulieS
- Description:
  
  I use to work in the field of Psychiatric Nursing for the State of Virginia at Eastern State Hospital , one of the state’s mental institutions for the criminally insane. I enjoyed my job immeasurably. Unfortunately, a few years ago, one of my patients kicked me in the face causing two fractures of my jaw and the loss of much of the hearing in my left ear. The blow also jerked my neck around leaving me with nerve damage. I was told by my doctors that I would never be able to work in my profession ever again. I was completely devastated. Not to mention that I am still paying on student loans for an education I can no longer use. I was put on Workman’s Comp. which is supposed to pay any medical bill that are related to my accident at work, but I can only go see the specific doctors that they send me to (including specialists) some of which are located in Richmond, VA, 1 1/2 to 2 hours from where I live . I went though every kind of therapy imaginable, but nothing worked. My pain and other symptoms just kept getting worse and worse. Then the doctors started canceling my appointments because the state had not paid any of the bills, so they refused to treat me anymore until the bills were paid in full. I figured while I was fighting with the state to get my medical bills paid I would use my regular health insurance to continue seeing these specialists for further treatment, but I soon discovered that the state had cut off my health insurance entirely. So now I have no health insurance save for the Workman’s Comp., which only covers problems related to the accident, and they weren't even paying those bills even though they are the ones who sent me to see those doctors in the first place. Well, now after several years I am still fighting to get my medical bills paid. My credit is completely ruined because of all this, and because my health insurance was taken away from me I’ve been having to pay doctors out of my own pocket. My savings is all gone, and my physical condition has deteriorated to the point that I cannot work at all. I am struggling to even function right now. I was finally diagnosed with Fibromyalgia, Chronic Fatigue Syndrome, Pulmonary Sarcoidosis, Fibroadenoma, Arthritis, and Depression about a year ago by Rheumatologists at the Medical College of Virginia, but although they diagnosed me with these diseases I was told they would not treat me for these problems there. They also suspect that most of my problems, especially the Fibromyalgia, is a result of the trauma I sustained from the accident at work, which would mean that the state should have to pay for my medical bills related to the Fibromyalgia as well. Unfortunately, there is no legal way to prove that the two things are related. So, I am stuck paying for everything myself without the benefit of insurance. Since then I have been referred to Rheumatologists and Pain Management Specialists all over the area to get some help, but they either won't see me at all because I don't have insurance or they keep wanting to pass me off to other doctors. So, I have spent all this money and have not received any kind of treatment. I am exceedingly tired, I'm enormously frustrated, I'm in tremendous pain all the time, and no one will help me!!!! I also applied for disability and was denied. I am now working on filing my appeal, but it is slow going and I am running out of time.
  
  Well, that is my basic story except for the fact that I also have a fiancé named Rick. Rick and I have been engaged now for 10 years. We were supposed to get married in 1998, but two days before the wedding Rick woke up in the morning and could not see. We could not understand what was going on. Nothing had happened; he just woke up like that. We made an emergency visit to the eye doctor who told us that both of his retinas had detached, and that he had to have emergency surgery within 72 hours to reattach the retinas or he would lose all of his vision. The surgery was set up for the next day all the way down in Winston-Salem , NC . So, the wedding was canceled, we drove down, and he had the surgery. Regrettably, the nerve damage to his optic nerves was too great to restore much of his vision. He can see some out of his right eye, but out of the left he can only see light. He is considered legally blind. Fortunately for us then, the hospital helped him get his disability approved very quickly. See, the hospital wanted their money. The surgery, hospital bills, and doctor bills came to a total of around $200,000, and they knew the only way they were going to get their money was to push his disability through. This way his surgery would be covered retroactively. Then he started getting very very sick (which is a whole other long story in itself). To make a long story as short as possible it took us a long time to discover what was causing him to be so sick and in so much pain. For years everyone, the ER doctors, the specialists, the hospitals, every single healthcare professional that saw him, told us his symptoms were psychosomatic. One of the Gastroenterologists even wrote in Rick’s records that he was faking and only coming in for the drugs. I still would like to know how you can fake vomiting massive amounts of blood or extremely high white cell counts. Well of course after that no doctor wanted anything to do with him. We finally found a doctor, a surgeon, who actually listened to what we had to say and realized there was no way he could be faking some of the symptom he was exhibiting. This doctor ran a multitude of test on Rick till he finally found the problem. It turned out that he had a genetic defect in his pancreas which was causing him to have Chronic Pancreatitis. The pancreatitis had gone for so long untreated that he had lesions and tumors throughout his pancreas and had started spreading into his small intestine. He ended up having to have his pancreas removed which caused a multitude of other problems. He has been extremely ill for 8 out of the ten years we have been engaged to one another, and has had to be hospitalized much of the time as well. Since the problems with his vision and his illness we have not been able to get married because of the way the system works. Even now while I’m on the Workman’s Comp., and only making half of the wage I was paid when I was working, with my income added to his they say we make to much for him to keep his medical insurance. With him being so sick this is not an option, so we were never able to get married.
  
  So, now we are both sick, and I’m so tired of dealing with doctors who act like they know everything, insurance companies, the red tape, and all the just plain bull that the healthcare system in this country keep trying to feed to us. I was a state employee when I got hurt, and since then I have been treated worse by both the state and the healthcare system than they would treat a dog. This whole situation has been going on for so long now that I have become severely depressed. I used to tell myself that things would get better eventually, but I’m afraid eventually is never going to come. Every time I think I’m taking a step forward, the system shoves me back two. For example, when I was finally diagnosed with fibromyalgia I thought, “O.K. now that we know what’s causing me so much pain, we can finally do something that will help me.” Then they drop the bombshell and tell me they don’t treat fibromyalgia there and that I am on my own. Well, it has been almost a year since I was diagnosed and I still have not received any treatment whatsoever. So, that is my basic story. To anyone who actually reads this, I’m sorry it is so long, but believe me, this is the short version.
- Blog post
- 1 year ago
- Views: 158
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Traveling with a Disability or
- From: gottitravel
- Description:
  
  Traveling With a Disability or Chronic Illness
  
  From About.com
  
  About.com Health's Disease and Condition content is reviewed by Kate Grossman, MD
  
  Make your vacation a pleasure instead of a pain
  
  by Karen Lee Richards
  
  Traveling is supposed to be a pleasurable activity. We all dream of relaxing on warm sandy beaches, curling up by a cozy fire in a mountain-top chalet, or touring historic locations. Unfortunately, the harsh reality of traveling with fibromylgia or chronic fatigue syndrome is that often, just getting to our destination is so stressful and exhausting, we spend most of our vacation in bed, trying to recover enough strength to make the trip home.
  
  Take heart! It doesn't have to be that way. With a little pre-planning, you can actually enjoy traveling again. Planning ahead reduces the stress caused by last minute rushing, essential items left behind, inadequate facilities and long lines.
  
  Because stress frequently triggers a flare of symptoms, planning ahead can be the key to making your trip an enjoyable experience.
  
  Itinerary
  
  Evaluate where you are going and what you will be doing. Do not set unrealistic expectations for yourself. Choose a destination that you will be physically comfortable with. If you are highly sensitive to cold weather, do not plan a trip to Alaska in the middle of winter. If you have difficulty climbing stairs, do not plan a walking tour of historic homes that feature high porches and multiple floors.
  
  Be realistic about how much activity you can handle each day. It is natural to want to see and do all you can with the few vacation days you have available, but if you try to do too much, you will not enjoy any of it. Schedule rest periods into your itinerary that allow you to take a nap. If it is not possible to return to your hotel at regular intervals, at least allow yourself time to sit down in a quaint cafe and leisurely sip your favorite beverage while your body rests and revives. Make your first day a short one. Avoid scheduling any sightseeing the day you arrive. Traveling is tiring at best, so just plan to settle in, rest and maybe go out for a nice dinner.
  
  If possible, plan at least one day of rest after you return home before going back to work or resuming other activities. Although vacations are enjoyable, they can also be tiring.
  
  While most large hotel/motel chains have 800 numbers, it is worth the extra few cents to call the
  
  Hotels
  
  hotel directly to make your reservation. This gives you the opportunity to ask specific questions about the actual facility in which you’ll be staying. Ask for a room that is on the main floor or near the elevator to minimize the distance you have to drag yourself and your luggage. Be sure to specify the accommodations you need (e.g. wheelchair accessible, shower grab bars, smoking/non-smoking).
  
  If you find hotel beds uncomfortable, after you check in do not hesitate to ask for additional pillows. Or go to a nearby discount store and buy a foam “egg crate” mattress pad. The added comfort is worth the few dollars it costs, and because it is so inexpensive, you can leave it behind when you go home.
  
  Airlines
  
  If you are traveling by air, call the airline and tell then you are disabled. Request a bulkhead aisle seat (first seat in coach). This is the easiest seat to get in and out of and has the most leg room. Allow yourself extra layover time when changing planes so that, even if the flight is running a little late, you will be able to make your connecting flight without rushing. Ask the airline what arrangements you need to make to minimize walking in the airports. Even if you do not normally use a wheelchair, request that one be waiting for you at curbside and at the gate of each stop on your trip. Save your energy for sightseeing and other fun activities. Get your ticket and boarding pass ahead of time to minimize the number of times you have to wait in line.
  
  Use luggage with wheels, check most of your bags and only carry on what you absolutely have to have during your flight. Lugging heavy bags through airports will leave you exhausted before you ever arrive at your destination. However, be sure to keep all of your medications in their original prescription bottles with you. In the event your luggage is lost, you will still have the medicine you need.
  
  Road trip
  
  If you are traveling by car, plan to stop for a few minutes every hour or two. Get out of the car, stretch and walk around a little. Staying in any one position too long will cause you to become stiff, increasing your pain. Plan your seating strategy. If there is room in the car, make a bed in the backseat so you can lie down when necessary. Try out a variety of sitting positions and note how many pillows you will need to take to keep you as comfortable as possible.
  
  Make your vacation a pleasure instead of a pain
  
  Theme Parks/Tourist Attractions
  Most theme parks and large tourist attractions are well designed to accommodate handicapped needs. Don’t let your pride get in the way of your comfort and fun. Even if you never use a wheelchair in your daily life, consider renting a wheelchair or scooter at theme parks…unless you can handle walking for miles and standing for hours without pain. At most attractions if you are in a wheelchair, you and those accompanying you can go right in without waiting in line. A wheelchair or scooter will allow you to do a lot more and suffer a lot less.
  
  Traveling Companions
  When you are planning your trip, sit down with your family or travel companion and make sure they understand ahead of time that you may not be able to do everything they want to do.
  
  The most stressful part of a trip can be trying to meet someone else’s expectations. Before you leave home, come to an agreement on how to handle the times you need to rest. Do you mind if they go somewhere without you one day? Are they willing to let you rest without making you feel guilty? Discuss possible scenarios and how you will handle them. Knowing you are free to say, “I’m really tired. I think I’ll skip Water World this afternoon.” enables you to relax and enjoy yourself.
  With a little planning, your vacation will be the pleasurable experience it is meant to be.
  
  Reprinted with permission, National Fibromyalgia Association , “Fibromyalgia AWARE”, June-September 2003
  /gc
- Blog post
- 1 year ago
- Views: 193
A Pledge - What's Yours?
- From: geekygranny
- Description:
  
  A Pledge to My Family for Living with Fibromyalgia & Chronic Fatigue Syndrome by Adrienne Dellwo
  
  Thursday May 1, 2008
  
  Part of making the changes to your life that come along with chronic illness is re-defining roles within your family. This is hard for any family, and even harder when some family members are resisting the change. Getting everyone on the same page can help, so I came up with this sample pledge you can make to each other. You can change or add to it to fit your circumstances.
- I pledge to try to keep our life as normal as possible while making the changes necessary to deal with my illness. Please help me make these changes and understand that while I need them, I don't want them.
- I pledge to be honest with you about my symptoms and how they limit me. Please understand that I'm not exaggerating my limitations and I wish I didn't have them.
- I pledge to allow you to resent my illness and to understand that you resent it and not me. Please understand that I have these resentments as well, and while I'll need to vent about them at times, these feelings are not directed at you nor do I expect you to "fix" my problems.
- I pledge to do all that I can to treat my illness and manage my symptoms, which includes rest and pacing myself. Please understand that these things help me stay functional and are not "laziness."
- Blog post
- 1 year ago
- Views: 101
Missouri Trying to Pass Bill o
- From: geekygranny
- Description:
  
  From Adrienne Dellwo of About.com ,
  
  S tate Bill Aims to Help People with Fibromyalgia
  
  I'm not sure how to feel about this one. As reported in the Kansas City Star newspaper, a bill aimed at helping people with fibromyalgia is working its way through the Missouri state legislature. It would create the Missouri Fibromyalgia Panel, which would raise at least $50,000 for an information and outreach campaign to help with early diagnosis and treatment, and to educate doctors and other health-care workers.
  
  Certainly any education is fantastic, and a lot of people would benefit from early diagnosis and treatment. It would help raise the profile of the condition and possibly give it more legitimacy. I question, however, if this is something the government should be doing.
  
  I don't want to open a huge can of political worms, but I have to ask - if there's a Missouri Fibromyalgia Panel, shouldn't there be a Kansas Chronic Fatigue Syndrome Panel, an Arkansas Autism Panel, an Idaho IBS Panel … you get my drift.
  
  Does every state need a panel for every disease and condition? Does the call for something like this show that we need major changes to our health-care system? Is this government waste or government responding to legitimate needs of the people?
- Blog post
- 1 year ago
- Views: 111
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Fibromyalgia - The Misundersto
- From: geekygranny
- Description:
  
  From: VirtualPainCentre.com
  
  U-M research gives hope for new treatments, better understanding of chronic pain condition.
  
  Fourteen years ago, Josephine* began to experience severe pain throughout her body. As her symptoms became worse, she sought help from a variety of specialists, but no one could diagnose her condition.
  
  "I was told they didn't know what was wrong with me; the blood tests came back good, x-rays came back clear," she says. "They had no idea and they'd shuffle me to another doctor, another specialist." She saw rheumatologists, neurologists, internists, and blood specialists, but there was still no answer.
  
  After more than a year, she was finally diagnosed with fibromyalgia, a chronic and debilitating condition that causes severe pain throughout the body. Ongoing research at the University of Michigan is demonstrating that fibromyalgia may affect millions of Americans, and research using sophisticated imaging techniques is helping the medical community better understand this disease.
  
  "Fibromyalgia is a condition that's characterised by widespread pain involving the muscles, the joints, and in fact, any area of the body," explains Daniel Clauw, M.D., director of the U-M Chronic Pain and Fatigue Research Center. "In addition to pain, individuals with fibromyalgia often experience sleep fatigue, difficulties with sleep, and difficulties with memory and concentration, among other symptoms."
  
  Josephine's symptoms included extreme fatigue, recurring headaches, chest pains, stomach and intestinal problems, muscle fatigue and weakness, restricted mobility, and anxiety. At her worst point, Josephine was bed-ridden and medicated to the point that she wasn't functioning due to the pain.
  
  However, there is hope. "Fibromyalgia is gaining respect in both the scientific and the lay community because of all the research that's been conducted - first, showing that it's a real disease, and second, showing that there are drugs that specifically work to treat fibromyalgia," Clauw says. "Our group and others at the University of Michigan have been very involved in looking at the underlying mechanisms of fibromyalgia."
  
  Clauw and his colleagues use a technique called functional imaging, which allows scientists to look at how different areas of the brain function when people are given painful stimuli. What they have found is that for the same amount of damage or inflammation in the peripheral tissues, a fibromyalgia patient would
  feel significantly more pain than the average person. Patients with fibromyalgia can also experience pain throughout their entire body even without any damage or inflammation of the peripheral tissues.
  
  "We think that one of the primary abnormalities in fibromyalgia is an imbalance between the levels of neurotransmitters in the brain that affect pain sensitivity," Clauw says. With this knowledge, new treatments are being developed to combat the condition's symptoms. "Although right now there are no drugs approved to treat fibromyalgia, within three years it its likely that there will be three, if not four, drugs specifically approved to treat the condition," he says.
  
  These drugs fall into two general classes. One class raises the levels of neurotransmitters that normally stop the spread of pain, while another class lowers the levels of neurotransmitters that normally increase the spread of pain.
  
  The American College of Rheumatology estimates that about 3 percent of Americans suffer from fibromyalgia, but Clauw notes that this may not accurately reflect the number of people with this condition. "It's widely agreed that their definition is very restrictive. In fact, it's probably more like 5 or 6 percent of Americans," he says.
  
  There are other misunderstandings about fibromyalgia. Some physicians believe that its symptoms are all psychological. "The doctors say, 'Well it's all in your head, you just need to get some extra rest and you'll be fine, toughen up,'" Josephine remembers. Another misconception about the disease is that it is caused by inflammation in the muscles. Doctors now know that neither of these theories is true. "This is not an inflammatory disorder and this is not a primary psychological condition," Clauw clarifies. "Pain is always a subjective matter, but everything that we can measure about the pain in fibromyalgia shows that it is real."
  
  Unfortunately, patients are often misdiagnosed as having disorders such as rheumatoid arthritis, chronic fatigue syndrome, or irritable bowel syndrome. Fibromyalgia has no definitive diagnosis, so doctors must rely on a patient's medical history and symptoms when diagnosing the illness, excluding conditions that might cause similar amounts of widespread pain.
  
  The condition's cause is still unknown, although it is probably a combination of genetics and environment. "A person is about eight times more likely to develop fibromyalgia if one of their relatives has it," says Clauw. "But there are also certain environmental triggers. For example, people develop fibromyalgia after motor vehicle accidents, or after certain types of infections or biological stress," he continues. Although the disease is more common in women, there are no real demographic factors that can predict its development.
  
  Clauw recommends that anyone who experiences pain or fatigue that is severe enough to inhibit day to day functioning seek medical attention, even if the symptoms have only lasted a couple of days. "It's better to get medical attention and appropriate treatment early for this condition," he says.
  
  As for Josephine, maintaining a positive attitude and acknowledging and accepting the disease has helped her live a more normal life. "I know that I will always have this disease, but now I see myself as a survivor," she says.
  
  * Not her real name
  
  (Source : University of Michigan : July 2007)
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- 1 year ago
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Low-Dose Naltrexone (LDN)

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