"You who bring good tidings... lift your voice with a shout... do not be afraid... 'Here is your God!'" (Isa. 40:9)

Verse of the Day

And I am sure of this, that he who began a good work in you will bring it to completion at the day of Jesus Christ.

(Philippians 1:6, ESV)

Sleep Tests

Posted on July 2nd, 2009 in Fibromyalgia, Health News by Jonnie Wright

Treating Airflow Restrictions During Sleep

Ninety-five percent of people with fibromyalgia (FM) wake up feeling unrefreshed. But don’t expect a visit to a sleep lab to pinpoint your problem symptoms. Depending upon the research study you read, the prevalence of primary sleep disorders in FM and chronic fatigue syndrome (CFS) patients varies widely, but sometimes it may be as little as 18 percent.1

Primary disorders identified by overnight sleep studies include obstructive sleep apnea, periodic limb movement sleep (PLMS), and narcolepsy. So the difficulties you face all night long are not usually caused by what scientists view as primary sleep disorders, but that does not make them any less real.

Speaking at the International Association for CFS, Charles Lapp, M.D., of Charlotte, NC, says, “We just are not doing the right studies to find the sleep disorders in FM and CFS patients.” In other words, the current technology is not capable of accurately detecting the sleep problems you face each night. In the July 2009 issue of the Fibromyalgia Network Journal you will read about the less researched yet very common sleep disorders that Lapp finds in his FM and CFS patients, as well as his recommendations for treating them. And although upper airway resistance syndrome (UARS) is a sleep disorder that can be identified during a sleep study, many centers tend to overlook it.

“The problem,” says Lapp, “is that UARS patients do not meet the criteria for apnea, in which the airway collapses and the breathing stops.” People with UARS struggle with breathing and this causes frequent arousals associated with daytime fatigue, headaches, and irritable bowel. However, the airways don’t collapse in UARS.

To better understand the difference between apnea and UARS, Lapps suggests that you consider the back of your throat to be like a tent. When you are upright, your throat is open and there is lots of air movement through the tent. If people with apnea lie down to sleep, the tent in the back of their throat collapses. They stop breathing for a moment and their oxygen levels drop, until they gasp for breath and become aroused. But, once placed on a continuous positive airway pressure (CPAP) machine, this blows up their tent so that they breathe easily and sleep throughout the night.

“UARS is not a tent disorder because the tent never collapses and the breathing is not obstructed,” says Lapp. “UARS is more like breathing through a straw or hose. These patients struggle to breathe through a partially deflated tent and because of this they do not get deep sleep.” One study has shown that almost all FM patients have UARS and placing them on CPAP does benefit them, but not to the extent that it works for apnea patients.2 “I can tell you from clinical experience that CPAP is not the answer,” says Lapp. “It helps patients sleep better, but it doesn’t cure their pain or fatigue.”

Being able to tolerate or afford CPAP is another issue for people with UARS. Health insurance companies often will restrict CPAP coverage to obstructive sleep apnea patients who are able to consistently demonstrate a 3 to 4 percent drop in blood oxygenation levels (something that doesn’t occur with UARS). Lapp says that some of his patients sleep in a recliner to keep the airways open. Aggressive treatment of acid reflux and nasal allergies, including irrigation of the sinuses with saline sprays or the use of a neti pot, is helpful. Sleeping on one’s side will also improve airflow, and you can either use a pillow wedge or arrange various sized pillows to create a ramp that props up the head if CPAP is not an option.

Although CPAP and other approaches will not cure your FM or CFS, Lapp emphasizes that it is a sleep disorder that should be addressed because patients do sleep better. In addition, he says CPAP does prevent hypertension and stroke, and reduces metabolic diseases that can lead to weight gain and diabetes. In other words, every little bit counts!

1. Reeves WC, et al. BMC Neurol 6:41, 2006.
2. Gold AR, et al. Sleep 27:459-66, 2004.

Fibromyalgia Network … Helping Patients Since 1988

PO Box 31750 | Tucson, AZ 85751-1750 | (800) 853-2929 | www.fmnetnews.com

Savella, New Drug

Posted on July 2nd, 2009 in Fibromyalgia, Health News by Jonnie Wright

The latest U.S. Food and Drug Administration approved drug to treat fibromyalgia, Savella, became available May 4. Since the release of this medication, many people have asked us for information about Savella. During the past five years of clinical trials, Fibromyalgia Network has referred to Savella by its study name “milnacipran” in several back issues.

Details about the medication, its side effects, and who may or may not be good candidates for the drug can be read in the Latest News Archives section of our website.

Since Savella is a new medication in the United States, many patients and doctors have been inquiring about it. Fibromyalgia Network would like to provide you with useful feedback about this drug. If you are taking or have taken Savella, we invite your comments on this one-page survey. We hope to share these comments in an upcoming eNews Alert. As usual, all information contained in this survey is anonymous.

If you have taken Savella, please click here to give us your comments.

IC Research

Posted on July 1st, 2009 in Health News by Jonnie Wright

Research in Action!

Two researchers, one funded by the Fishbein Foundation and the second funded by the ICA Pilot Program, report hopeful findings:

  • Fishbein Family IC Research Foundation grant (2005) recipient Thomas Chelimsky, MD, of Case Western University, was recently awarded National Institutes of Health (NIH) funding to continue his work with IC, related conditions, and the central nervous system.
    Read more.
  • ICA Pilot Research Program grant (2007) recipient C.A. Tony Buffington, of The Ohio State University, has discovered a potential marker (or markers) for IC.
    Read more.

Disability an issue?

Posted on July 1st, 2009 in Health News by Jonnie Wright

Winning Your Disability Case in 3 Words

art-winning-your-disability-600x3991

In a disability case, almost any symptom or limitation can be disabling; but to determine whether they preclude work, the relevant questions are how frequent, how severe, and how long do they last?

A critical point I make to people who contact me everyday is that their disability case is won or lost based on symptoms/limitations and not on their diagnosis! Clearly, under federal law, a disability claimant has to have a legitimately diagnosed physical and/or psychological disorder to even allege disability, but this is only the beginning of the analysis.

read more…

www.invisibleillness.com  

Taking your medications correctly

Posted on June 28th, 2009 in Health News by Jonnie Wright

 Are You Taking Medication as Prescribed?

http://www.fda.gov/ForConsumers/ConsumerUpdates/

Medication adherence, or taking medications correctly, is generally defined as the extent to which patients take medication as prescribed by their doctors. This involves factors such as getting prescriptions filled, remembering to take medication on time, and understanding the directions.

Common barriers to medication adherence include

  • the inability to pay for medications
  • disbelief that the treatment is necessary or helping
  • difficulty keeping up with multiple medications and complex dosing schedules
  • confusion about how and when to take the medication

Poor adherence can interfere with the ability to treat many diseases, leading to greater complications from the illness and a lower quality of life for patients. Here are some examples of areas in which medication adherence can pose challenges, along with tips for taking medications correctly and talking with health care professionals about your questions and concerns.

National Handshake Day

Posted on June 25th, 2009 in Life Issues by Jonnie Wright

No Squeezing Today on National Handshake Day

handshake

Many of you may look at that title, and think… “Uh, what is the big deal?” But if you live with any kind of painful condition where your hands are easily hurt, or you have a chronic illness and germs spreading to you can be a concern, the simple handshake can turn into a big deal.

But as the arthritis worsened, I didn’t squeeze back I just put my hand out and cringed that people may think I was a wimpy girl that didn’t know how to properly shake hands.

And then… it started feeling like people were crushing my hands. I would walk away with tears on the rims of my eyes. The handshakes were often from men who really had no reason to squeeze any woman’s hand that hard. It seemed like some odd way to show off their strength, but it left me thinking less of them for practically bending my (wedding) ring.

How important is it to shake hands? According to CNN Employers are more likely to overlook body piercings than a bad handshake!

But how many of us really want to say, “I don’t shake hands. I have _____,” and go into an in depth explanation of our chronic illness or pain when people really don’t care?  I’d love to hear your solutions!

My temporary solution turned into one of over ten years. I offer my left hand, palm side down. It’s still a kind gesture. Though the CNN article does call a left-handed handshake “The “southpaw.” But they says it “happens when the person uses the left hand to shake because the right hand has food or a drink.”

When I reach out and grab the other person’s right hand, no one in American tends to even think I am waiting for a kiss on the top of my hand.

When they stretch their hand out, I smile and keep talking and extend my hand to theirs, curling my fingers over the top of their fingers just slightly and then taking my hand back.

To be honest, it throws them so off, they forget to squeeze it! Yet, I don’t have to give an explanation, nor do I appear rude. A little odd maybe, but that’s okay with me!

Do you have CFS?

Posted on June 24th, 2009 in Chronic Pain, Health News by Jonnie Wright

Almost everyone experiences fatigue from time to time. But for as many as 4 million U.S. adults, teens and children, the fatigue is crushing, unrelieved by rest and accompanied by a constellation of other punishing symptoms. They suffer from chronic fatigue syndrome or CFS, also known as chronic fatigue and immune dysfunction syndrome (or CFIDS). Its symptoms are debilitating enough to destroy good health and active lifestyles, end fulfilling careers and devastate families.

More people suffer from CFS than MS, lung cancer or AIDS. Yet 80% have not been diagnosed by a medical provider. Preliminary studies indicate that for CFS, as with other chronic conditions, early detection, diagnosis and treatment ultimately yield better health outcomes.

If you think you may have CFS, use the “Do I Have CFS” questionnaire for an assessment that will familiarize you with the symptom patterns and exclusionary conditions that lead a health care provider to make a CFS diagnosis.

Disclaimer:
The CFIDS Association of America, Inc. does not dispense medical advice on the diagnosis or treatment of chronic fatigue and immune dysfunction syndrome (CFIDS, also known as chronic fatigue syndrome or CFS) or similar conditions. This questionnaire is provided only as a source of information to site visitors about the symptom patterns and exclusions that can lead a health care provider to make a diagnosis of CFIDS/CFS. The CFIDS Association of America assumes no liability for any medical treatment or other activity undertaken by readers. For medical advice, please consult your personal health care provider. http://www.cfids.org/default.asp

Forgiveness

Posted on June 24th, 2009 in Life Issues by Jonnie Wright

We all know that forgiveness is a virtue. Still the question remains: “Why is it so hard to forgive?”

I believe there are typically three main roadblocks to forgiveness.

First, there’s the inability to see our own mistakes and imperfections. If we are unable to see our own faults and mistakes, how can we possibly move toward forgiveness in our relationships? We must first be able to admit that we are not perfect and that we are capable of hurting people we love.

Second, there’s unresolved anger. Unresolved anger is a major hindrance to the healing power of forgiveness. If we refuse to let go of bitterness, rage, or hatred, we are holding on to very destructive forces. These forces are in direct contrast to the power of forgiveness, and they cannot exist together.

Finally, there’s a misunderstanding of what forgiveness is. Many people have great misconceptions about what forgiveness is, and therefore they struggle with it. Delusions about forgiveness are dangerous because they are not the truth. The truth will always set us free. But if we believe the lies about forgiveness, then we will refuse to forgive.

Forgiveness is key in creating loving relationships.

© Copyright 2004 Smalley Relationship Center

FDA Sets Limitations on Pain Meds

Posted on June 22nd, 2009 in Life Issues by Jonnie Wright

 Voice Your Concerns about Pain Meds Access

Let your voice be heard! The Risk Evaluation and Mitigation Strategies (REMS) that the Food and Drug Administration (FDA) is proposing on pain medicines could severely limit your access to pain meds.  You have an opportunity to have your voice heard by sharing your comments about the needs of people with pain to improve quality of life and to reduce their sense of suffering.

It is difficult enough to live with pain, it shouldn’t have to be so hard to find appropriate treatment.  For many, pain medicines are one of the necessary tools in moving from patient to person.  Let your voice be heard . . . it will make a difference!

According to the FDA, REMS for certain opioid drugs is a strategy to manage a known or potential serious risk associated with a drug or biological product.

For prescribing of certain pain medicines, REMS will require:

  • Healthcare providers to have particular training or experience
  • Pharmacies and practitioners to be specially certified
  • Drug(s) to be dispensed to patients only in certain healthcare settings
  • Safe use be documented through laboratory tests
  • The patient using the drug to be enrolled in a registry

read more…

Smalley on Happiness

Posted on June 18th, 2009 in Life Issues by Jonnie Wright

Smalley Relationship Center How do I find happiness?

Smiles and laughter begin in the heart and soul. People can be overwhelmed with trouble, but according to Solomon, a truly cheerful face comes from a merry heart.

One thing that allows a heart to be merry is contentment. Consider times when you have felt contented and at peace with yourself and the world. Now think of your discontented times. How easy was it to be merry when you were longing for a better job, for your spouse to change, for more money or a better home, or for more disciplined children?

A major part of life should be filled with laughter. Enjoy those who are closest to you. Enjoy their strengths and weaknesses.

Ultimately the foundation of contentment, happiness, and a joyful heart is a personal relationship with Jesus Christ.

What is weighing you down that you aren’t free to laugh and enjoy life?

What in your relationship with God is keeping you from contentment and peace in your heart?

Gary (& Norma) Smalley
Editor,
Smalley Relationship Center

Next Page »
Powered by WebRing.