Fromyalgia & Chronic Fatigue Syndrome
general information and support links
"You're getting old when you get the same sensation from a rocking chair that you once got from a roller coaster."
Don Lee and Vacation 2004 Family pics online.
Cherri & Seth's Website My sister, Cherri & her new husband's site.
I will share with you the reason I got this page and why I am doing research on FM. My sister was diagnosed with FM after having her first child in 1992. She had numerous problems during her pregnancy as many women do however her health problems continued and the pain increased. She had seen several doctors as many people with FM do but found no relief. After a second child (which she was told may reverse what the first pregnancy did & thought it would) the symptoms only got worse. During this time I did not know much about FM nor did anyone else I knew. However she networked to find more information in an attempt to seek a cure. She longs to feel "normal" and have the energy and be pain free to do what she use to do. She did find out about a research study which she got both of us in. I was part of the control group (healthy but out of shape). As a result of spending the week learning a lot about FM and the frustration they have with doctors, family, friends and people in general telling them "it is all in your head", I see a great need to help. This involves both providing support through this page and research. Even though FM patients look normal they do have several abnormalities including sleep alpha-delta wave abnormality which keeps them awake and experience unrested sleep, immune abnormalities and cognitive problems. They have problems with working memory and processing information which does show up as a deficit on neuropsychological testing. I suspect this is related to an abnormally low level of certain neurotransmitter precursors. I have found that certain neurotransmitters do speed up the information processing of the brain to a degree that it is not as troublesome. It doesn't bring it up to "normal" but who knows it may after a period of time.
Since there appears to be an apparent abnormality and affect on the neurological system I am creating a page focusing on neurology and links to pertinent sites.
Fibromyalgia & Fatigue Centers "The Fibromyalgia & Fatigue Centers (FFC) are dedicated to treating patients suffering from conditions known as fibromyalgia and chronic fatigue syndrome. It is through a holistic, integrated and comprehensive approach to the treatment of underlying physiological factors that differentiates our approach and ultimate patient success. It is our goal to develop individualized and sustaining regimens that lead to a significant change for positive patient outcomes."
Neuroendocrineimmune Dysfunction Syndrome (NDS) "A group of scientists and patients has been working for the past two years to come up with a new name and expects to present it to the federal government's CFS Advisory Committee in the next few months."
Hidden Pain Information and links on the theories of pain, research and management of pain. Good links to do searches on pain management.
Other Syndromes I include information and links to other conditions which seem to have some similar symptoms to CFIDS. There may or may not be a relationship here but I found them to be interesting.
People with CFIDS sites Web pages created by people with FM and CFS. These are personal sites, many which gives their personal stories and accomplishments. There are also sites where you can join support and advocacy groups.
Personal side of this site I'll be including my observations, opinions, experiences, etc. related to these conditions and the twin study. It'll be interesting reading but at the time of my writing the information there isn't necessarily any scientific research backing my views however I will add links to sites with similar views as I come across them.
Need some financial assistance with prescription medications?
Disability page Are you looking into disability benefits or are you currently on disability?
"CHICAGO (AP) - Hospitals will be required to tell patients when they've been victims of medical errors under safety standards that take effect Sunday. The rule is the first of its kind from the Joint Commission on Accreditation of Healthcare Organizations, a nonprofit group that monitors nearly 5,000 hospitals nationwide. The commission acted partly in response to a 1999 Institute of Medicine report estimating that medical errors kill 44,000 to 98,000 hospital patients each year. Under the guidelines, hospitals that don't discuss harmful mistakes with patients and fail to prove to commission investigators that they're doing so will risk losing their accreditation."
Center on Research of Women with Disabilities "The Center for Research on Women with Disabilities (CROWD) is a research center that focuses on issues related to health, aging, civil rights, abuse, and independent living. CROWD's purpose is to promote, develop, and disseminate information to expand the life choices of women with disabilities so that they may fully participate in community life. More specifically, researchers develop and evaluate models for interventions to address specific problems effecting women with disabilities."
Twin Study They just updated their site and include the latest information on the 2nd UW CFS twin study. They just recently added a brief overview of the results of the first study. Click here to see results They have completed the first study and found there isn't much difference between the healthy twins and CFS twins. The healthy twins just are not bothered by the abnormalities so they will be doing farther studies to find out why. One interesting thing they found related to neurally mediated hypotension. Four healthy twins and 4 "sick" twins had positive tilt table tests. They will be recruiting sets of twins where both sets do not have any CFS, FM or any other related conditions and running them through the same tests. If you know of any healthy twins (or think they are healthy) refer them to this site.
University of Washington Chronic Fatigue Syndrome Cooperative Research Center's publications.
Twin Study Summary I just included a brief summary of the results of the twin study and some other research I had received from the twin study in Seattle.
Medical and Herbal Treatments for FM & CFS. Various treatments that some people have found beneficial in treating CFS & FM.
Co-Cure Site provides the latest FM & CFS research, support and advocacy.
Living With Illness Resources in FM & CFS.
The Pediatric Network for Chronic Fatigue Syndrome, Fibromyalgia, and Orthostatic Intolerance "This website and forum were created by a young adult with CFS and NMH, and the mother of two children who have had CFS and POTS." Site includes a lot of information on these conditions as well as support forum.
American Association for Chronic Fatigue Syndrome
FMS Canberra Your safe place for personal healing A large site in Australia with a lot of information on FM & related conditions.
Canberra Fibromyalgia and Chronic Fatigue Syndrome Pages Information from Australia for people with Myalgic Encephalopathy: Fibromyalgia, Chronic Fatigue Syndrome, Myalgic Encephalomyelitis etc., and Chronic Pain
CDC CHRONIC FATIGUE SYNDROME PROGRAM Program Update
The Fibromyalgia & Myalgic Encephalomyelitis\Chronic Fatigue Resource Site Site provides a lot of general information on FM & CFS written in easy to understand manner and includes advocacy and support information and links.
National Fibromyalgia Awareness Campaign Site provides latest research information and general information on FM and managing symptoms.
Chronic Fatigue Syndrome / Myalgic encephalomyelitis Includes lots of links to sites with current research and news on CFIDS.
NOAH CFS detailed information which has been reviewed & edited by MDs at Harvard Medical School & Massachusetts General Hospital. Information on a wide variety of health issues. To find information on CFS & FM, first click health, then click on neurological/ neuromuscular diseases. Search around and you can find a lot of valuable information.
National Fibromyalgia Research Association This site contains good information on FM research, diagnostic criteria, and other good information.
SAYME The South Australian Youth with ME / Chronic Fatigue Syndrome (CFS) aims to raise awareness around the world about ME / CFS and provide fun, friendship and support for young people who suffer from this terrible illness.
Missouri Arthritis Rehabilitation Research and Training Center (MARRTC) Fibromyalgia: News & Research, FAQs, Living Well, Treatment & Links.
Living With Illness by Katrina Berne, Ph.D. Information on CFS & FM.
FIBROMYALGIA Information And Resources A lot of information & links on FM & CFS.
The American FM Association AFSA is a non-profit organization dedicated to research, education and patient advocacy for fibromyalgia syndrome (FMS) and chronic fatigue syndrome (CFS).
ME & CFS Capita Selecta Quarterly (laymen's version) a collection of articals on FM & CFS research.
American Family Physician Treating Fibromyalgia Excellent artical describing FM diagnosis, etiology and treatment.
Med-Help.net A very extensive site that contains research and practical information on FM & CFS. Also contain information on how to get free medication for those with limited income. Site has extensive links to various medical sites. Compiled by medical professionals and one has severe form of FM.
CHRONIC PAIN and ILLNESS LIFE-LINE Site focuses on support and information valuable to those in chronic pain.
Fibroworld Excellent site contains a lot of detailed information on fm and myofascial pain syndrome.
Oxford's Abode ME/CFS Site provides research & detailed information on Myalgic Encephalomyelitis and Chronic Fatigue Syndrome. Also include support and advocacy information.
Portsmouth VA FMS CFIDS Support Group Support site for people with CFS & FM especially in the Portsmouth area but the site contains information for everyone. They are adding more information to their site.
fmsNews It is a new site offering extensive information, the latest articles as well as a monthly newsletter. Our objective is to help keep people with fibromyalgia or chronic fatigue syndrome informed about critical developments concerning their conditions.
Immunesupport.com This link provides extensive research information on FM, CFS along with a wide variety of other conditons. It also contains vitamins & herbs information.
Myalgia.com This site provide information on exercise for FM & CFS. This site came to me from WebMD.
Unfortunately I lost an excellent site created by a lady with FM. However I will leave her comments about FM here. I have included what she has emailed me in regards to FM and the twin study at Seattle. I have included it here because I personally believe she is on the right track (and this is also one area they are researching now at Seattle) and I believe it may be beneficial to visitors to this site. Linda's thoughts: "I think people CAN have fibromyalgia and not 'know' it. I think the pain is real...it's not that you have pain and don't know it, but that you have Fibro and don't have pain. My theory is that you are 'born' with the tendency toward it (genetic, which supports the studies on twins) and it either 'kicks off' or it doesn't. Something kicks it off.....whether it's stress, a traumatic event, a disease. So some people can go through their entire lives WITH fibromyalgia, but it never flares up to the point where persistent, chronic pain is experienced. It's inside of them, but it doesn't become 'active'. That would explain why people of all ages can get fibro. It can flare up at any time...we just don't know a). what the genetic/neurological 'markers' are, and b). why it flares up, what exactly brings it on."
Tupelo Pain Clinic Dr. John McFadden reports he has found the origin of FM. He is still adding to his web page but does provide good information.
PDR.net Site provides medical information.
Mind Set Neurotransmitter precursors, vitamins and herbal product which may help restore cognitive problems related to stress and other life factors. This supplement provides many vitamins and minerals the body needs which apparently is benefical to the brain.
New health web site: They are adding new info & links on this site. It does have a section on FM.
University of Washington Bone and Joint Sources Site has a lot of information on arthritis and a lot of other conditions including FM. It's a large site & will take time to search around.
The Autonomic Nervous System and it's Relationship to Headache. Site gives some good info on the ANS.
Women's Health.Medscape.com Effects of stress on women's health. Researchers are finding that stress really does effect our health more than once thought.
Research studies This site just opened and reportedly will provide information on numerous research projects on various medical conditions in a easy to read format for the purpose of recruting people to participate in the studies.
Veritas Medicine Site provides free confidential resource access to clinical trials and information on treatment options.
What's in the brain? An interesting site that gives some good basic information on the brain
You can order books and other products on FM, CFS & related information. After entering their home page just enter fibromyalgia or other conditions you want in the search box.
Desired life prespectiveLife seems to be becoming increasingly more stressful and our bodies begin to decline in stanima as we age. This link gives us a reminder to refocus on what's important and to slow our pace. Regardless of our health status stress does aggravate many health problems and can trigger undesirable genes or latent viruses (unfortunately we all have some of those) to cause health problems. Decreasing stress and taking care of ourselves promotes healing and health.
Prayer Feeling discouraged from suffering from FM, CFS or other symptoms? Sometimes all we can do is pray.
Words of Wisdom by Mother Theresa She shares how we should keep doing what is right despite what people may say or do. This is really a note of great encouragement.
Why do some people with FM seem depressed or moody? Click here to read my observations.
The Dash What are we doing with our lives. It is important how we live our lives day to day.
I'm suffering. How should I cope with the daily frustrations? A letter which gives the proper prospective and may help you refocus and better cope with life's struggles & pains.
How you may feel at times. Feeling like you want to give up?
Overcoming adversity A message to help you refocus so you can turn the negatives to positives.
Struggling with FM & CFS as well as depressive symptoms? A short note of encouragement.
Illustration of how we make a mess of things yet God still loves us.
Are you feeling a little down or need to read some inspirational letters? I decided to add a link for encouragement to visitors of this page.
Our pets love & accept us unconditionally. We should learn to love & understand each other like our pets. Then FMS, CFS & other related syndrome sufferers would feel accepted & understood.
Check out a dog's perspective of life (humorous).
I am the author of People & Pain: How to Deal with the Chronic Pain of Fibromyalgia, which you kindly mention on your Web site. Thank you for doing so. I wanted to let you know that the link is outdated, however. The Colorado Health Site ceased to operate a couple of years ago. However, I was able to update and to publish the book since then. It is available through any bookseller, including Amazon.com and Barns and Noble, etc.
“If you have fibromyalgia, chances are you have seen several doctors before one finally told you the name of this weird, debilitating and discouraging illness. In search of relief, you probably have tried everything you could think of, as well as some remedies you'd never heard of before-and nothing cures you or takes the pain away completely. You have undoubtedly been forced to make adjustments in how you approach every area of your life, including work, your family and community activities, as well as your social life. But you can learn to manage and live with it. If you or someone you love has fibromyalgia, this book is a must-read. It's written in an informative, yet down to earth in a style unlike anything else on the market. It would greatly benefit anyone who deals with chronic pain, regardless of the cause.”
If you wish to post a link to Amazon, it is People & Pain: How to Deal with the Chronic Pain of Fibromyalgia.
Cecil E. Maranville
Father, I ask you to bless my friends, relatives and email buddies reading this right now.
Show them a new revelation of your love and power.
Holy Spirit, I ask you to minister to their spirit at this very moment.
Where there is pain, give them your peace and mercy.
Where there is self-doubt, release a renewed confidence through your grace.
Bless their homes, families, finances, their goings and their comings.
In Jesus' precious name. Amen.