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Below are the 15 most recent journal entries recorded in lupusmctd's LiveJournal:

Wednesday, January 16th, 2008
11:25 am
West Coast LupusMCTD™ "Patient Picnic in The Park"
WHAT: First Annual West Coast LupusMCTD™ "Patient Picnic in The Park"
www.LUPUS MCTD.com is hosting a gathering for Lupus, MCTD and other connective tissue disease patients.

Where: 11793 N. Micke Grove Rd., Lodi,CA (Off Highway 99, west of Armstrong Rd. exit and follow the signs).

Who: Food, fun and entertainment for the whole family as well.
This is our first inviting of any medical professional who would like to enjoy meeting the patients with Invisible Illnesses

Get to know us, find out what our daily life is like when we are so sick yet looks so normal

Food, fellowship, fun and entertainment for patients, family and friends. As part of www.LupusMCTD.com commitment to raising awareness, medical professionals are encouraged to attend this event.

Practitioners play a vital role in patients quality of life. This setting could provide an opportunity for discussions about patient care. Get to know us, find out what our daily lives are like, when we are so sick, yet look normal.

DETAILS: It will be "Potluck " style.
To save costs if you could bring your own drinks & meat that would be appreciated! Thank  you!
Potluck. Bring your own meat and drinks will be appreciated! Thank you!

Donated items we could use at the potluck are:
Musicians; Chips, baked beans, various salads, veggie trays and salad dressings. Cookies and any nonperishable foods.

Raynauds Patients: Please be advised, dress appropriately, as weather conditions vary at this time of year.

Please pass on this information to anyone you might know who is living in the northern Central Valley that would like to attend this event. Provide them with our web site link, and we will forward them the information.


If anyone needs to make arrangements for transportation, please email me at Lupuswebsite@aol.com or at lupusmctdasst@aol.com

Email us your confirmation that you will be attending by May 1, 2008. LupusWebsite@aol.com

www.LupusMCTD.com™ Represents:
1) We are patients helping researchers build a future for the lives of others...
2) Where HOPE is a WORK In Progress™
3) Pay It Forward~Giving Back To The Future Lupus/MCTD Patients

If you you like to host your own Patient Picnic In The Park in your area, please contact Kathy so she can advertise for you.


Current Mood: busy
Saturday, July 21st, 2007
3:25 pm
Wednesday, July 11th, 2007
9:42 pm
Phila. firm buys option to Lupus detection technology
Phila. firm buys option to Lupus detection technology

SensiGen LLC acquired an option Wednesday from the University of Michigan to exclusively license a set of biomarkers for early detection and monitoring of Lupus.

The technology includes a patented panel of proprietary biomarkers for epigenetic, or non-genetic, variations of genes uniquely associated with Lupus.

Biomarkers are substances -- found in an increased amount in blood, other body fluids, or tissues -- that can be used to indicate the presence of a disease.

An estimated 1.5 million Americans, mainly women, are currently afflicted with Lupus; 16,000 new cases are diagnosed annually. Symptoms include extreme fatigue, painful and swollen joints, fever, skin rashes, and deterioration of kidney function. The root cause of this disease is unknown, and there is no known cure. If detected early enough, treatments are available to help patients manage the disease.

Financial terms of the licensing deal were not disclosed.

The technology was developed by Dr. Bruce Richardson, professor of medicine at the University of Michigan and chief of rheumatology for Ann Arbor Veterans Hospital, and his colleagues.

"This is a highly advanced and very promising panel of disease-specific biomarkers that are clearly associated with onset and recurrence of Lupus, but which to date have proven difficult to detect reliably by current methods," said Shawn M. Marcell, president and CEO of SensiGen.

SensiGen of Philadelphia is a development stage biotechnology company focused on gene-based molecular diagnostics.

Monday, July 9th, 2007
5:26 pm
~Understanding Fibromyalgia
Fibromyalgia is a real condition with real symptoms. Chronic pain all over the body. Flu-like aching. Severe tenderness. Sleep issues. Fatigue. It all adds up to one of the most common widespread types of chronic pain. In fact, it affects more than 6 million people in the U.S.

Fibromyalgia is a disorder that is complex and often misunderstood. This section will provide you with a quick and easy way to start yourself on the path to better understanding fibromyalgia.

~What is Fibromyalgia
Fibromyalgia (pronounced fie-bro-my-AL-juh) is one of the most common chronic widespread types of pain in the U.S. In fact, it affects more than 6 million people. And its causes are still not fully known. Recent data suggest that changes in the central nervous system may contribute to the chronic pain of this condition.

~The science of fibromyalgia.
Nerve and brain cells can become extra sensitive under certain conditions. This may lead to extra signals being sent to the brain, and an increase in the pain that a person feels. A person whose central nervous system has become extra sensitive may feel a type of chronic widespread pain that is typical of fibromyalgia.

The pain may occur as a result of a number of things. For example, viral infections, trauma, or injury. Even exposure to chronic stress. The sleep problems that go along with fibromyalgia may make the condition worse. And that could lead to even more pain and disturbed sleep.

Right now, there is no blood test or X-ray that can tell someone if they have fibromyalgia. But researchers continue to focus on improved ways to diagnose and treat this condition.

~Symptoms of Fibromyalgia
The pain of fibromyalgia can make simple tasks hard. Even something like washing dishes may all of a sudden feel like too much. Sleeping is often a struggle, too.

Fibromyalgia causes physical pain. Fibromyalgia can often hamper the ability to work and engage in everyday activities, as well as compromise personal relationships, and affect a patient’s social life, too.

Getting relief from the pain of fibromyalgia isn’t easy. And support from friends, family, and the health care system is often lacking. Patients may feel like they must learn to live with the pain.

~Patients with fibromyalgia often experience:

Chronic widespread body pain in the neck, shoulders, back, arms, and legs
Muscle tenderness, soreness, and flu-like aching
Poor sleep, stiffness, and fatigue
Dull pain in muscles, tendons, and ligaments

Fibromyalgia is painful. And its causes are still not fully known. Even though fibromyalgia can’t be detected through a blood test or an X-ray, your doctor can perform a “tender point” exam to make a diagnosis. It is important to see a doctor because many of its symptoms are similar to other conditions.

~Frequently Asked Questions
What is fibromyalgia?
Fibromyalgia is one of the most common chronic widespread types of pain in the U.S. Patients with fibromyalgia often experience:

Chronic widespread body pain in the neck, shoulders, back, arms, and legs
Deep tenderness, soreness, and flu-like aching
Poor sleep, stiffness, and fatigue
Dull pain in muscles, tendons, and ligaments

~Who is affected?

It’s estimated that approximately 5% to 7% of the U.S. population have fibromyalgia
Women are more likely to have fibromyalgia
It affects all ages and races
Most people are diagnosed between the ages of 20 and 50 years old
Fibromyalgia has a serious impact on patients' families, friends, and employers.

~What are the symptoms?
Fibromyalgia is characterized by the presence of multiple tender points and a collection of symptoms.


Profound, widespread, and chronic
Migrating to all parts of the body and varying in intensity
Described as deep muscular aching, throbbing, twitching, stabbing, and shooting pain
Neurological complaints such as numbness, tingling, and burning are often present and add to the discomfort of the patient
The severity of the pain and stiffness is often worse in the morning
Aggravating factors that affect the pain may include: cold/humid weather, not feeling refreshed or feeling more tired after sleeping, physical and mental fatigue, excessive physical activity, physical inactivity, anxiety, and stress


The fatigue of fibromyalgia is much more than being tired. It is an overwhelming exhaustion
It feels like every drop of energy has been drained from the body
It can leave the patient with a limited ability to function both mentally and physically

~Sleep Problems:

Many fibromyalgia patients have an associated sleep disorder
This disorder prevents them from getting deep, restful, restorative sleep
Medical researchers have documented specific differences in the stage 4 deep sleep of fibromyalgia patients
During sleep, people with fibromyalgia are constantly interrupted by bursts of awake-like brain activity, limiting the amount of time they spend in deep sleep

~Other Symptoms/Conditions:
Additional contributing symptoms/conditions may include:

Irritable bowel and bladder
Headaches and migraines
Restless legs syndrome (periodic limb movement disorder)
Impaired memory and concentration
Skin sensitivities and rashes; dry eyes and mouth
Ringing in the ears
Vision problems
Raynaud's Syndrome
Neurological symptoms
Impaired coordination

~What causes fibromyalgia?
Most experts agree that fibromyalgia is a central nervous system (CNS) disorder. Studies have found that, compared with people who do not have fibromyalgia, people with fibromyalgia may have:

Excess pain-producing chemical (substance P) in the spinal fluid and too little pain-reducing chemical
Low levels of blood flow to the thalamus region of the brain, which plays an important role in pain sensation and movement
Reduced functioning of the HPA axis hypofunction, which regulates production of certain hormones
A change in the serotonin transporter
Abnormalities in the function of cytokines (proteins that affect how cells interact and behave)

There also appears to be a fairly strong genetic component to fibromyalgia and related conditions. Like most disorders, fibromyalgia occurs in part because of the genes that individuals are born with (that make them more susceptible to an illness), and in part because of what they are subsequently exposed to over their lifetime.

For some, the onset of fibromyalgia is slow; however, in a large percentage of patients the onset is triggered by an illness or injury that causes trauma to the body. These events may act to incite an undetected physiological problem already present.

Exciting new research has also begun in the areas of brain imaging and neurosurgery. Ongoing research will test the theory that fibromyalgia is caused by a defect in the central nervous system that changes the way a person normally would respond to pain.

~How is fibromyalgia treated?
One of the most important factors in improving the symptoms of fibromyalgia may be for the patient to recognize the need for lifestyle changes.Change is often difficult because it implies adjustment, discomfort, and effort. However, in the case of fibromyalgia, certain changes may bring about a noticeable improvement in function and quality of life.

A physician who is knowledgeable about the diagnosis of fibromyalgia, and who can listen to and work with the patient is an important component in the treatment of fibromyalgia. It may be a family practitioner, an internist, or a specialist (rheumatologist or neurologist, for example). Traditional types of medical help may be only part of a potential treatment program. Alternative treatments, nutrition, relaxation techniques, and exercise can play an important role in fibromyalgia treatment as well. Each patient should, with the input of a health care professional, establish a treatment plan best suited to them.

~How is Fibromyalgia Diagnosed
Although fibromyalgia can’t be detected through a blood test or X-ray, your doctor can perform a "tender point" exam as a tool for diagnosis.

Fibromyalgia is diagnosed based on whether or not the patient meets the criteria established by The American College of Rheumatology (ACR) in 1990. According to the ACR, the following criteria must be met:

History of chronic widespread pain for at least three months
Patients must exhibit pain in at least 11 of 18 tender points

To be considered widespread, the pain must meet all of the following:

Pain in both sides of the body
Pain above and below the waist
Pain in the axial skeletal area (cervical spine, anterior chest, thoracic spine, or low back)
Pain (not just tenderness) in at least 11 of 18 tender point sites (see the illustration) when the doctor applies pressure (palpation) on the site

For various reasons, many people with fibromyalgia struggle with their symptoms for many years before being diagnosed. Some relief can be felt in just knowing there is a name for their pain, that fibromyalgia is not terminal, and that they can finally begin to focus on specific ways to actually begin to manage and treat their symptoms.

~10 Things You Should Know About Fibromyalgia

Fibromyalgia is one of the most common chronic widespread types of pain in the U.S. The condition affects more than 6 million people.
Fibromyalgia pain is widespread and persistent. There is often deep tenderness. Plus soreness or burning pain, which often causes a lack of sleep. Sometimes, patients also have stiffness in their muscles or flu-like aching.
Fibromyalgia is thought to result from neurological changes in how a patient perceives pain.
To be diagnosed with fibromyalgia, patients must have widespread pain lasting at least three months, plus pain in at least 11 of 18 parts of the body known as “tender points.” (According to the American College of Rheumatology.)
Women are much more likely to report having fibromyalgia than men.
The outlook for people with fibromyalgia has never been better. Exercise, diet, and rest can help manage this condition. So can counseling and drug therapy.

Several types of health care providers are available to help manage fibromyalgia. These include rheumatologists, primary care physicians, nurse practitioners, neurologists, psychiatrists, physiatrists, and pain specialists.
Fibromyalgia places large financial costs on patients and society. It may cause lost work days, as well as lost income and disability payments.

Although fibromyalgia is not a psychological condition, it can impact mood and cause distress. In that way it is similar to other chronic pain conditions. However, the majority of sufferers do not have mood-related disorders.
Do you think you may have fibromyalgia? You need to know you are not alone. Talk to your health care provider. Or contact the National Fibromyalgia Association at 714-921-0150

~Working With Your Doctor
How quickly fibromyalgia is diagnosed, and how effectively it is treated, can be greatly impacted by decisions made by the patient with regard to his or her medical care and advice. It is important for patients to select the right doctor and establish an effective partnership through open communication and understanding.

Choosing the right doctor is very important when it comes to finding relief for any condition, including fibromyalgia. Do you have a doctor you know well? If not, here are a few tips:

Ask a friend, family member, or coworker. Have someone you know and trust refer you to a doctor. It’s a great place to start.
Learn more about the doctor's fibromyalgia experience.
Many doctors have experience treating fibromyalgia. Some have more history treating it than others.

Should you see a specialist? Ask your doctor. Be sure to ask questions on your first visit. Together, you can decide whether you should see a specialist. Some doctors, like rheumatologists, pain specialists, and neurologists have devoted their careers to relieving pain.

Call your health care insurance provider. They will have a list of physicians covered under your plan. And they can also help find a location near you. They can also tell you what steps you need to take before you see a specialist.
Wednesday, June 20th, 2007
6:02 pm
We recieved our Moo Cards
We recieved our Moo Cards today... YEAH!!!!
But I need more than 100 to pass out!
5:59 pm
Bush Vetos New Stem Cell Bill
President George W. Bush vetoed a bill Wednesday June 20,2007 that would have eased restraints on federally funded embryonic stem cell research.

What a big let down for millions who can benefit from the future care of stem cell from Lupus patients to Parkinson's patients.
Monday, June 11th, 2007
6:04 pm
10:03 am
10:02 am
10:01 am
10:00 am
9:59 am
9:58 am
9:56 am
9:38 am
Lupus & Mixed Connective Tissue Disorders
When you get a chance, come check us out at http://www.LupusMCTD.com

We cover most autoimmune disorders from Fibro to Lupus. There is the "Library" full of updated information, true stories, dates & places of where to go for support/lectures/fundraisers.

We talk about it all... Depression, Medicines, Doctors, Family Life, Our Pain and Our Happiness.

  • We have chat rooms!

  • We have Arcade Games!

  • We have Daily Trivia!

  • Most of all.....We have each other!

  • "We Understand What You Are Going Through"

    http://www.LupusMCTD.com OPEN 24 Hours 7 Days A Week
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