Chronically Ill Unite September 14 to Blog About Invisible Illness Issues

Hello Everyone,

I want to acknowledge this important week and will be reminding people about my tools and tips. Please share your story too.

Here is a small caption from the site you should check out:

National Invisible Chronic Illness Awareness Week, September 14-20, 2009, invites bloggers to have a significant role in their awareness campaign. For example, part of their outreach has been featuring guest bloggers on their own web site invisibleillnessweek.com , as well as inviting bloggers around the globe to commit to blogging about invisible illness issues. To help spread the word they have also create a meme, “30 Things About My Invisible Illness You May Not Know” that people have posted on Facebook, blogs and other social networks.

Click here:

Central Sensitivity Syndromes

I would like to share some information I found on another site. To read more about this post, go to:

Wellsphere comments by Sandy R. (click on the title to read her post)

Several years ago Muhammad B. Yunus, MD reported that ME/CFS & FM and other conditions such as IBS, migraines and multiple chemical sensitivities were all part of a larger group he referred to as “Central Sensitivity Syndromes.” He said that all of these illnesses have one factor in common - central sensitization. This is when there is an exaggerated response of the central nervous system to stimuli.

Fibromyalgia is a malfunction of the central nervous system that causes disordered pain processing, and results in pain amplification. The primary symptoms of FM are:

* Widespread chronic pain
* Extreme fatigue
* Sleep problems.

Other symptoms that may occur include: allergies, irritable bowel, irritable bladder, headaches, migraines, dizziness, numbness and tingling, sensitivity to cold or heat, depression, restless legs syndrome, chemical or environmental sensitivities, impaired balance or coordination, dry eyes and mouth, vision problems, or problems with memory, concentration and cognitive functioning.

NOTE: I reference Sandy's material for the information listed above. Please take a look at her site.

This part is mine: I have experienced all of these symptoms at one point or another and have been able to manage or alleviate some of them.

I pray and hope you have a pain and fatigue free day!

What is Brain Fog?

Brain Fog is the inability to concentrate and possibly experiencing some type of memory problems. You may go into a state of confusion or suddenly lack clarity. There have been studies that show limited improvement with some drugs. You should talk to your doctor and be willing to experiment and try different avenues.

Fatigue contributes to those that suffer from brain fog. So you must try to combat the fatigue in conjunction with your brain fog issues.

Try to find safe supplements that help your low energy levels and any prescriptions that your doctor has recommended. Be sure to keep your PCP and Pain Management doctor communicating with each other.

In order to succeed, you must stay in constant communication and update your medical records that should include, symptoms, medications, physical activity and diet details. I know it can be difficult to keep records, but without these records you will never be able to figure out what works for you.

We are all different and react to medications, exercise, etc. in our own unique way. So what may work for your friend or family member, may not work for you. Do not get discouraged and keep trying.

I am in the process of creating my own personal record keeping ideas. I will share this with you as soon as I have made it easy to use. Do not give up on me......I am trying to help you.

I pray and hope that this post has helped someone today. Praying for a pain free day.

Fibro Viv

How to get general information about CFS

You find yourself or a loved one feeling debilitated mentally and physically and cannot function at a level you are used to functioning, there are places you can go and research prior to visiting your physician. However, please be sure and confirm or hopefully disprove a diagnosis of Chronic Fatigue Syndrome (C.F.S.). Try to remember that symptoms can be very similar to those of other illnesses.

The following website offers information on C.F.S.: www.cdc.gov


I do not gain any type of commission or points for advertising www.cdc.gov. I sincerely pray that you do not suffer from this illness. I do and I deal with it on a daily basis. There are very few good days and many bad days. I have to stay focused and try to do something about helping myself as well as others. This BLOG and my posts help me feel like I am contributing and helping people in some small way.

CDC.gov (www.cdc.gov) is your on-line source for credible health information and is the official Web site of the Centers for Disease Control and Prevention (CDC). CDC is committed to achieving true improvements in people’s health. CDC applies research and findings to improve people’s daily lives and responds to health emergencies—something that distinguishes CDC from its peer agencies. Working with states and other partners, CDC provides a system of health surveillance to monitor and prevent disease outbreaks (including bio-terrorism), implement disease prevention strategies, and maintain national health statistics. CDC also guards against international disease transmission, with personnel stationed in more than 25 foreign countries.

I pray and hope this information has helped someone today. Praying for a pain free day:)

Fibro Viv

What causes Fibromyalgia

Although the cause of fibromyalgia is unknown, researchers have several theories about causes or triggers of the disorder. Some scientists believe that the syndrome may be caused by an injury or trauma. This injury may affect the central nervous system. Fibromyalgia may be associated with changes in muscle metabolism, such as decreased blood flow, causing fatigue and decreased strength. Others believe the syndrome may be triggered by an infectious agent such as a virus in susceptible people, but no such agent has been identified.

The information noted above was Courtesy of ProHealth's ImmuneSupport.com/cat. Click on the title to read more about fibromyalgia on ProHealth's website.

I hope and pray that this information has helped someone today:)

Where else to go for information and support

The internet is a great tool for conducting research and gathering information about your illness. A search from any one of the many Internet search engines will lead you to a number of organizations that represent the needs and concerns of CFS and FM patients and work hard to raise awareness, funding and support for these debilitating diseases. Such organizations include ProHealth's ImmuneSupport.com (which I have a link to on my blog).

The CFIDS Association of America, The National Fibromyalgia Partnership, The National Fibromyalgia Association, The National CFIDS Association, and The National Fibromyalgia Research Association, among others.

Establishing a support system is crucial to the overall well-being of fibromyalgia and CFS patients. This can start by sharing your story on my blog, I promise to answer your questions and I do understand what you are going through because I suffer from these diseases.

I will lead you to sources or give you information on how to educate your immediate family and friends. They will need to be educated about the patients debilitating symptoms and significant limitations. I want to start a support group in my area (Austin, TX)and also want to help support others via my blog or just email me personally.

I hope and pray that is post has helped someone today. Praying for a pain free day.

Fibro Viv

New Therapy for Chronic Fatigue Syndrome

I read this article on a new therapy for Chronic Fatigue Syndrome. José Montoya, MD, associate professor of medicine (infectious diseases), and postdoctoral scholar Andreas Kogelnik, MD, PhD, have used the drug valganciclovir — an antiviral often used in treating diseases caused by human herpes viruses — to treat a small number of CFS patients.

The researchers said they treated 25 patients during the last three years, 21 of whom responded with significant improvement that was sustained even after going off the medication at the end of the treatment regimen, which usually lasts six months. The first patient has now been off the drug for almost three years and has had no relapses. A paper describing the first dozen patients Montoya and Kogelnik treated with the drug was published in the December issue of Journal of Clinical Virology.

“This study is small and preliminary, but potentially very important,” said Anthony Komaroff, MD, professor of medicine at Harvard Medical School, who was not involved in the study. “If a randomized trial confirmed the value of this therapy for patients like the ones studied here, it would be an important landmark in the treatment of this illness.”

To find out more about this; click on the the title of this post to connect to the article.

I hope and pray that this information has helped someone today.

Unanswered Questions

There are still many unanswered questions with regard to Fibromyalgia syndrome. Researchers are working on issues such as:

• Can FMS be prevented or cured?
• What is the association of FMS and other conditions such as Chronic Fatigue Immune Syndrome?
• Why is FMS so difficult to diagnose?
• In what ways might various health promotion behaviors alter one's response to FMS?

Symptoms:
Women with FMS can experience a variety of symptoms at different times. However, many women with FMS experience common symptoms such as disturbed sleep, memory, fatigue, pain, anxiety and depression. These symptoms are listed below:

Symptom/ Percentage of Patients Affected

Muscular pain/ 100%
Fatigue /96
Insomnia /86
Joint pains /72
Headaches /60
Restless legs /56
Paresthesias /52
Impaired memory /46
Leg cramps /42
Impaired concentration /41
Nervousness /32
Major depression /20

This was information given to me at the Clinical Study. I know there are additional symptoms because I have experienced them. Please keep this in mind.

There are some things that some people and doctors do not understand. Those afflicted by Chronic Fatigue Immune Syndrome know that that it is not relieved with bed rest and often worsens with physical or mental activity. These are additional symptoms without percentages:

General weakness
Eyes sensitive to light
Sensitivity to noise
Feeling closed in, uncomfortable around crowds
Personal bubble (your space feels invaded or shortness of breath)
Allergies
Tender lymph nodes, Sore throat
Trouble sleeping or not feeling refreshed after sleep
Muscle aches
Joint pain without swelling or redness
Pain on the bottom of your feet
Trouble waking up
Sleeping for over 18-20 hours (due to lack of deep sleep)
Headaches
Trouble with short-term memory or concentration
Forgetfulness or confusion
Irritability, anxiety, mood swings, or depression
Low grade fever, hot flashes, or night sweats
Prolonged fatigue lasting after minimal exercise and light activities
Dizziness
Chest pain or shortness of breath
Nausea

There are many other symptoms you will experience if you also have IBS and other physical problems. I personally have experienced all the symptoms listed above. I have not experienced them all at once! Thank goodness. However, all of these symptoms will be experienced at one time or another with these illnesses and many during a bad flare.

Your state of health is affected by how you live, love, work, relate, and believe. I believe that you can maximize your wellness by having a positive, responsible attitude toward your health and by practicing behaviors that promote wellness. I know, I know.....sometimes it is difficult to think positive when you hurt so badly and are so fatigue. Believe me, I have been there many times. I have to shake it off and cry, pray and sometimes literally just go to sleep during this process. It is O.K. to take time for yourself and cry, pray, do whatever it takes to help you shake the bad attitude. There are days I tell my family I do not feel well, feel cranky and need to spend time alone in my room. It is best to just be honest and let them know you feel badly and cranky. When you are frank and honest about how you feel, your friends and family understand. If they do not understand, just pray for them. They will come around. I know that all of our days are bad, some worse. However, we need to be strong enough to fight this battle and try to remain positive. I have yet to experience a remission, but have faith that someday I will be in remission. Have confidence in yourself to have the ability to remain strong and it will enable you to have a different view of your quality of life. Believe me, I only have a few hours in a day and sometimes no hours that I feel well enough to visit with family and friends. I cherish those hours and feel blessed to have that time.

Please share your story with me and others by posting on this website.

I pray and hope this post has helped someone today.

The Concept of Health

I want to share some information I received when I attended a Clinical Study on Fibromyalgia.

All of us want good health. Good health is merely the absence of illness, or something else? Check out the definition of health in The Encyclopedia Britannica. It will define health as "the extent of an individuals continuing physical, emotional, mental and social ability to cope with his environment".

Health experts now describe lifestyle as one of the most important factors affecting health. In fact, it is estimated that as many as 7 out of the 10 leading causes of death could be reduced through common-sense changes in lifestyle. There is a brief test that was developed by the U.S. Department of Health and Human Services, to help people estimate how they are doing with regard to their health risks and practices. The behaviors covered in the test are recommended for most Americans. Some of these may not apply to persons with certain chronic diseases or disabilities, or to pregnant women. Such persons may require special instructions from their physicians.

If you are interested in receiving the details of the test, please post your interest and email me for the information. I will be happy to share this information and fax it to you or email it.

I pray and hope this post helps someone out there. Thank you.

STRESS is NOT the cause of Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS)

Parents suffering from chronic fatigue syndrome are often made to feel as if it is all in their heads. Family, friends, co-workers, employers, and even health care providers seem to believe that those with chronic fatigue syndrome are just not handling stress well.

I do not remember where I read this, however, this is what was stated: A March 2001 consensus panel, convened by the Centers for Disease Control and Prevention (CDC) and the Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) Association of America, proclaimed that stress is not the cause of chronic fatigue syndrome. Instead, the syndrome appears to be a hormonal/neurological problem. It is highly probable that an infection could trigger chronic fatigue syndrome, perhaps through a problem with the immune response to the infection.

Personally, I know my stress level has gone up with this illness. However, my stress is the inability to complete simple household tasks or even ability to work anymore. Your self-esteem is crushed and you feel so inadequate. These are feelings we have to work out and understand that we are doing the best that we can under these conditions. I know it is easier said than done. Try to give yourself a break, and do not be so hard on yourself.

I am blessed to have people around me understand that it is not in my head. Also, when I did work, I could work under pressure and enjoyed it. It was invigorating, like imparting strength and vitality. I have also read articles where it states that most people that end up with Fibromyalgia and Chronic Fatigue are "A" type personalities.

I hope this information is helpful to someone out there.

Fibromyalgia/ Chronic Fatigue and Immune Dysfunction Syndrome

What is Fibromyalgia and Chronic Fatigue and Immune Dysfunction Syndrome?

Fibromyalgia is a long-term problem that causes pain in the muscles and soft tissues of your body. You may lack energy or have trouble sleeping. These and other symptoms can be severe enough to affect your work and home life.

What causes fibromyalgia?
There are theories as to what may cause fibromyalgia, but at this point there is not enough evidence to support any single cause. Some experts think that fibromyalgia may be related to nerve cells that are too sensitive. Others think that chemicals in the brain (neurotransmitters) may be out of balance. Or it may be related to disturbances of the deep phase of sleep.

What are the symptoms of fibromyalgia?
Most people with fibromyalgia have pain in their muscles, soft tissues, back, or neck, as well as sleep problems. Many people get so tired (fatigued) that they become weak. If pain and fatigue are severe enough, the person can become disabled. A more specific sign of fibromyalgia is the presence of up to 18 specific tender points on the body.

Although they are less common than pain, fatigue, and sleep problems, a variety of other symptoms may occur as well. These include headaches, morning stiffness, trouble concentrating, and irritable bowel syndrome. As with many conditions that cause chronic pain, it is common for people with fibromyalgia to have anxiety and depression. These can make symptoms worse.
Symptoms tend to come and go. Times when they are constant (flares) may be followed by times when they occur less often with less intensity, or are absent (remissions).

How is fibromyalgia diagnosed?
Doctors diagnose fibromyalgia based on two things. One is widespread pain, defined as pain on both sides of the body above and below the waist. The other is tenderness in at least 11 of 18 tender points when pressed.

How is fibromyalgia treated?
There is no cure for fibromyalgia, but doctors can treat and control the symptoms. If you have fibromyalgia, you can help manage the symptoms by taking an active role in your treatment.
Treatment may be different for each person. It can include:

* Getting regular exercise to help with muscle aches and stiffness.
* Changing your routine, schedule, and surroundings to improve your sleep habits and reduce stress.
* Taking medicine to help you sleep better and to relieve pain.
* Getting counseling to help you to manage long-term (chronic) pain and find better ways to handle stress.

Some people with fibromyalgia also find complementary therapies helpful. These include acupuncture, massage, behavioral therapy, and relaxation techniques.

Chronic fatigue and immune dysfunction syndrome
Chronic fatigue syndrome (CFS) is a condition that causes severe, unrelenting fatigue that interferes with a person's daily activities. The fatigue is not the result of exertion and it is not relieved by rest.

The cause of CFS is unknown.
Symptoms of CFS include fatigue, sleep problems, difficulty concentrating and thinking clearly, memory problems, fever, headaches, muscle and joint pain, sore throat, and tender glands in the neck or armpits. Normal activity and light exertion cause tiredness and malaise that usually last longer than 24 hours.

Physical examinations and laboratory tests are done to rule out other causes of the symptoms. Because there is no test that can identify CFS, it can be diagnosed only by ruling out all other conditions.

This is some information I gathered from different sources, magazines, websites, and my own experience. Please share yours.