Restless Leg Syndrome

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I know several people who have this and so it seemed only natural to include an overview here. The name can be deceiving because it is not only associated with the legs. Please read so you can understand and learn more. It was an eye opening article for me. This information is from www.rls.org website. While this article is short, you can check into it more at the website and many others.

Restless Leg Syndrome

Restless legs syndrome (RLS) is a neurological condition that is characterized by the irresistible urge to move the legs. While the name may sound funny, it is a very real disorder. In order for you to be officially diagnosed with RLS, you must meet the criteria described in the four bullets below:

  • You have a strong urge to move your legs which you may not be able to resist. The need to move is often accompanied by uncomfortable sensations. Some words used to describe these sensations include: creeping, itching, pulling, creepy-crawly, tugging, or gnawing.
  • Your RLS symptoms start or become worse when you are resting. The longer you are resting, the greater the chance the symptoms will occur and the more severe they are likely to be.
  • Your RLS symptoms get better when you move your legs. The relief can be complete or only partial but generally starts very soon after starting an activity. Relief persists as long as the motor activity continues.
  • Your RLS symptoms are worse in the evening especially when you are lying down. Activities that bother you at night do not bother you during the day.

RLS can also cause difficulty in falling or staying asleep which can be one of the chief complaints of the syndrome. A substantial number of people who have RLS also have periodic limb movements of sleep (PLMS). These are jerks that occur every 20 to 30 seconds on and off throughout the night. This can cause partial awakenings that disrupt sleep. Sleep deprivation can seriously impact your work, relationships, and health.

Fibromyalgia basics

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I wanted to post about this because I also have this as an overlapping disease with lupus. I know many who have both as well. I found this information on mayoclinic.com. Hope you read it and will have a better understanding when you are done. Always discuss any issues with your doctor.

Definition

By Mayo Clinic staff

CLICK TO ENLARGE

Illustration showing 18 tender points on the body used to diagnose fibromyalgia symptoms  Fibromyalgia tender points

You hurt all over, and you frequently feel exhausted. Even after numerous tests, your doctor can’t find anything specifically wrong with you. If this sounds familiar, you may have fibromyalgia.

Fibromyalgia is a chronic condition characterized by widespread pain in your muscles, ligaments and tendons, as well as fatigue and multiple tender points — places on your body where slight pressure causes pain.

Fibromyalgia occurs in about 2 percent of the population in the United States. Women are much more likely to develop the disorder than are men, and the risk of fibromyalgia increases with age. Fibromyalgia symptoms often begin after a physical or emotional trauma, but in many cases there appears to be no triggering event.

Symptoms

Signs and symptoms of fibromyalgia can vary, depending on the weather, stress, physical activity or even the time of day.

Widespread pain and tender points
The pain associated with fibromyalgia is described as a constant dull ache, typically arising from muscles. To be considered widespread, the pain must occur on both sides of your body and above and below your waist.

Fibromyalgia is characterized by additional pain when firm pressure is applied to specific areas of your body, called tender points. Tender point locations include:

  • Back of the head
  • Between shoulder blades
  • Top of shoulders
  • Front sides of neck
  • Upper chest
  • Outer elbows
  • Upper hips
  • Sides of hips
  • Inner knees

Fatigue and sleep disturbances
People with fibromyalgia often awaken tired, even though they seem to get plenty of sleep. Experts believe that these people rarely reach the deep restorative stage of sleep. Sleep disorders that have been linked to fibromyalgia include restless legs syndrome and sleep apnea.

Co-existing conditions
Many people who have fibromyalgia also may have:

Causes

Doctors don’t know what causes fibromyalgia, but it most likely involves a variety of factors working together. These may include:

  • Genetics. Because fibromyalgia tends to run in families, there may be certain genetic mutations that may make you more susceptible to developing the disorder.
  • Infections. Some illnesses appear to trigger or aggravate fibromyalgia.
  • Physical or emotional trauma. Post-traumatic stress disorder has been linked to fibromyalgia.

Why does it hurt?
Current thinking centers around a theory called central sensitization. This theory states that people with fibromyalgia have a lower threshold for pain because of increased sensitivity in the brain to pain signals.

Researchers believe repeated nerve stimulation causes the brains of people with fibromyalgia to change. This change involves an abnormal increase in levels of certain chemicals in the brain that signal pain (neurotransmitters). In addition, the brain’s pain receptors seem to develop a sort of memory of the pain and become more sensitive, meaning they can overreact to pain signals.

Risk factors

Risk factors for fibromyalgia include:

  • Your sex. Fibromyalgia occurs more often in women than in men.
  • Age. Fibromyalgia tends to develop during early and middle adulthood. But it can also occur in children and older adults.
  • Disturbed sleep patterns. It’s unclear whether sleeping difficulties are a cause or a result of fibromyalgia. But people with sleep disorders — such as nighttime muscle spasms in the legs, restless legs syndrome or sleep apnea — often have fibromyalgia.
  • Family history. You may be more likely to develop fibromyalgia if a relative also has the condition.
  • Rheumatic disease. If you have a rheumatic disease, such as rheumatoid arthritis or lupus, you may be more likely to develop fibromyalgia.

Complications

By Mayo Clinic staff

Fibromyalgia isn’t progressive and generally doesn’t lead to other conditions or diseases. It can, however, lead to pain, depression and lack of sleep. These problems can then interfere with your ability to function at home or on the job, or maintain close family or personal relationships. The frustration of dealing with an often-misunderstood condition also can be a complication of the condition.

Preparing for your appointment

By Mayo Clinic staff

Because many of the signs and symptoms of fibromyalgia are similar to various other disorders, you may see several doctors before receiving a diagnosis. Your family physician may refer you to a rheumatologist, a doctor who specializes in the treatment of arthritis and other inflammatory conditions.

What you can do
You may want to write a list that includes:

  • Detailed descriptions of your symptoms
  • Information about medical problems you’ve had in the past
  • Information about the medical problems of your parents or siblings
  • All the medications and dietary supplements you take
  • Questions you want to ask the doctor

What to expect from your doctor
In addition to a physical exam, your doctor may check your neurological health by testing your:

  • Reflexes
  • Muscle strength
  • Muscle tone
  • Senses of touch and sight
  • Coordination
  • Balance

Tests and diagnosis

By Mayo Clinic staff

CLICK TO ENLARGE

Illustration showing 18 tender points on the body used to diagnose fibromyalgia symptoms  Fibromyalgia tender points

The American College of Rheumatology has established two criteria for the diagnosis of fibromyalgia:

  • Widespread pain lasting at least three months
  • At least 11 positive tender points — out of a total possible of 18

Tender points
During your physical exam, your doctor may check specific places on your body for tenderness. The amount of pressure used during this exam is usually just enough to whiten the doctor’s fingernail bed. These 18 tender points are a hallmark for fibromyalgia.

Blood tests
While there is no lab test to confirm a diagnosis of fibromyalgia, your doctor may want to rule out other conditions that may have similar symptoms. Blood tests may include:

  • Complete blood count
  • Erythrocyte sedimentation rate
  • Thyroid function tests

Treatments and drugs

By Mayo Clinic staff

In general, treatments for fibromyalgia include both medication and self-care. The emphasis is on minimizing symptoms and improving general health.

Medications
Medications can help reduce the pain of fibromyalgia and improve sleep. Common choices include:

  • Analgesics. Acetaminophen (Tylenol, others) may ease the pain and stiffness caused by fibromyalgia. However, its effectiveness varies. Tramadol (Ultram) is a prescription pain reliever that may be taken with or without acetaminophen. Your doctor may recommend nonsteroidal anti-inflammatory drugs (NSAIDs) — such as aspirin, ibuprofen (Advil, Motrin, others) or naproxen sodium (Aleve, others) — in conjunction with other medications. NSAIDs haven’t proved to be as effective in managing the pain in fibromyalgia when taken by themselves.
  • Antidepressants. Your doctor may prescribe amitriptyline to help promote sleep. Fluoxetine (Prozac) in combination with amitriptyline is effective in some people. Duloxetine (Cymbalta) may help ease the pain and fatigue associated with fibromyalgia. And milnacipran (Savella) was recently approved by the Food and Drug Administration for the treatment of fibromyalgia symptoms.
  • Anti-seizure drugs. Medications designed to treat epilepsy are often useful in reducing certain types of pain. Gabapentin (Neurontin) is sometimes helpful in reducing fibromyalgia symptoms, while pregabalin (Lyrica) is the first drug approved by the Food and Drug Administration to treat fibromyalgia.

Therapy

  • Physical therapy. Specific exercises can help restore muscle balance and may reduce pain. Stretching techniques and the application of hot or cold also may help.
  • Counseling. Cognitive behavioral therapy seeks to strengthen your belief in your abilities and teaches you methods for dealing with stressful situations. Therapy is provided through individual counseling, classes, and with tapes, CDs or DVDs, and may help you manage your fibromyalgia.

Lifestyle and home remedies

By Mayo Clinic staff

Self-care is critical in the management of fibromyalgia.

  • Reduce stress. Develop a plan to avoid or limit overexertion and emotional stress. Allow yourself time each day to relax. That may mean learning how to say no without guilt. But try not to change your routine completely. People who quit work or drop all activity tend to do worse than those who remain active. Try stress management techniques, such as deep-breathing exercises or meditation.
  • Get enough sleep. Because fatigue is one of the main characteristics of fibromyalgia, getting sufficient sleep is essential. In addition to allotting enough time for sleep, practice good sleep habits, such as going to bed and getting up at the same time each day and limiting daytime napping.
  • Exercise regularly. At first, exercise may increase your pain. But doing it regularly often decreases symptoms. Appropriate exercises may include walking, swimming, biking and water aerobics. A physical therapist can help you develop a home exercise program. Stretching, good posture and relaxation exercises also are helpful.
  • Pace yourself. Keep your activity on an even level. If you do too much on your good days, you may have more bad days.
  • Maintain a healthy lifestyle. Eat healthy foods. Limit your caffeine intake. Do something that you find enjoyable and fulfilling every day.

Alternative medicine

By Mayo Clinic staff

Complementary and alternative therapies for pain and stress management aren’t new. Some, such as meditation and yoga, have been practiced for thousands of years. But their use has become more popular in recent years, especially with people who have chronic illnesses, such as fibromyalgia.

Several of these treatments do appear to safely relieve stress and reduce pain, and some are gaining acceptance in mainstream medicine. But many practices remain unproved because they haven’t been adequately studied. Some of the more common complementary and alternative treatments promoted for pain management include:

  • Acupuncture. Acupuncture is a Chinese medical system based on restoring normal balance of life forces by inserting very fine needles through the skin to various depths. According to Western theories of acupuncture, the needles cause changes in blood flow and levels of neurotransmitters in the brain and spinal cord. Some studies indicate that acupuncture helps relieve fibromyalgia symptoms, while others show no benefit.
  • Chiropractic care. This treatment is based on the philosophy that restricted movement in the spine may lead to pain and reduced function. Spinal adjustment (manipulation) is one form of therapy chiropractors use to treat restricted spinal mobility. The goal is to restore spinal movement and, as a result, improve function and decrease pain. Chiropractors manipulate the spine from different positions using varying degrees of force. Manipulation doesn’t need to be forceful to be effective. Chiropractors may also use massage and stretching to relax muscles that are shortened or in spasm. Because manipulation has risks, always go to properly trained and licensed practitioners.
  • Massage therapy. This is one of the oldest methods of health care still in practice. It involves use of different manipulative techniques to move your body’s muscles and soft tissues. The therapy aims to improve blood circulation in the muscle, increasing the flow of nutrients and eliminating waste products. Massage can reduce your heart rate, relax your muscles, improve range of motion in your joints and increase production of your body’s natural painkillers. It often helps relieve stress and anxiety. Although massage is almost always safe, avoid it if you have open sores, acute inflammation or circulatory problems.

Lupus and Sleep

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I found this article interesting and thought I would share it. It discusses how sleep is important not only for us lupies, but for everyone. Enjoy the reading… this article is from the summer 2010 edition of the magazine “Lupus Now”, cover story.

Sleep Easy – Why Sleep Is Critical When You Have Lupus

By Jenny Thorn Palter

Autoimmune diseases, including lupus, run in Karen Avery’s family. “My brother has discoid lupus, and I lost my cousin to lupus three years ago. She was only 42—the age I am now,” she says.

Avery was diagnosed with lupus in 1989 while in college. “I remember vividly the day I got sick; I fell asleep in class, and when I woke up my hands were blue. I stood up from my desk, and I was in so much pain, I thought, ‘I must have the flu.’ I have always had sleep issues and great difficulty sleeping at night. Plus, I wasn’t eating right, I wasn’t exercising; I was running myself into the ground,” she says.

Today, Avery is a managing director for Marsh & McLennan Companies, an insurance brokerage and consulting firm based in New York City; she runs a global consulting firm for the company. As if that were not enough, she is a new single mother of one-year-old fraternal twin girls, Erika and Eden.

Although Avery has, for the most part, been successfully managing her disease for years, she has been hospitalized four times since 1989 with lupus flares. She believes every flare was caused by a significant and prolonged lack of sleep. For her, getting the right amount of sleep is essential.

What’s in a Zzzz …?

Until the 1950s, most people thought of sleep as a passive, dormant part of daily life. We now know sleep affects our daily functioning and our physical and mental health in many ways we are just beginning to understand.

According to the National Institutes of Health (NIH), approximately 70 million people in the U.S. are affected by a chronic sleep disorder or intermittent sleep problem. NIH reports that women suffer from lack of sleep more than men do; these sleep problems increase in frequency as women age.

The 2009 Sleep in America™ poll, conducted by the National Sleep Foundation (NSF), found that compared with those in poor health, people in good health are two to three times more likely to work efficiently, exercise, and eat healthfully because they are getting enough sleep.

Add lupus to the mix, and the importance of good sleep takes on an even more important role.

Is Sleep Related to Disease?

Sleep deprivation can be harmful to the immune system. Research done through the National Institute of Neurological Disorders and Stroke has shown that neurons that control sleep interact closely with the immune system. For example, as anyone who has had the flu knows, infectious diseases tend to make us feel sleepy. This probably happens because cyto-kines—chemicals that the immune system produces while fighting an infection—are powerful sleep-inducing chemicals. Sleep may help the body conserve energy and other resources that the immune system needs to mount an attack.

Daniel McNally, M.D., a pulmonologist and director of the University of Connecticut’s Sleep Disorders Center, agrees that people with a chronic illness, especially those who live with chronic pain and must deal with sleep-disrupting effects of medications, are likely to have more sleep problems on average. “Being able to help these people with ways to sleep better may give them a bit of relief,” he says. “Here at UConn, we try to train our medical students and residents to make sleep part of their health review with the patient.”

McNally says the university’s medical school curriculum includes four class hours on sleep. “That puts the university in the top 20 percent of medical schools in the country for the amount of time spent teaching about sleep,” he says.

The NSF poll also found that only about 40 percent of Americans feel sleep is as important as exercise or eating well to overall health and well-being. Only 32 percent of those who reported having sleep problems discussed it with their physician. McNally is not surprised.

“Many of the problems with sleep come about because people take it for granted and skip on sleep so they can do ‘x’ or ‘y,’ and then wonder why they feel poorly. I’m always frustrated when someone who should be getting adequate sleep says, ‘Can’t I just take more vitamins?’ ”

How Much Sleep Do We Need?

How much sleep we need depends on many factors, including age. While teenagers need about nine hours of sleep, seven to eight hours of sleep a night appears to be the best amount for most adults. The amount of sleep a person needs also increases if he or she has been deprived of sleep in previous days. Getting too little sleep creates a “sleep debt,” which is much like being overdrawn at a bank. Eventually, your body will demand that the debt be repaid.

We don’t seem to adapt to getting inadequate sleep, either; we may get accustomed to a sleep-depriving schedule, but our judgment, reaction time, and other functions are still impaired.

What’s worse, the practice of “burning the candle at both ends” that is common—and even respected—in Western industrialized societies has created so much sleep deprivation that what is really abnormal sleepiness has become the norm.

But sleep deprivation is dangerous: Sleep-deprived people who are tested by using a driving simulator, or by performing a hand-eye coordination task, perform as badly as or worse than those who are intoxicated.

Are You Making Sure of Sleep?

When Avery decided to have her children, she vowed to take control of both her work hours and her sleep hours. To be sure to get enough sleep to prevent her lupus from flaring, Avery has implemented a variety of strategies. Read her tips for better sleep at lupusnow.org/sleep.

“Without sleep I will have a lupus flare, so sleep is critical for my overall health and well-being,” Avery says. “The quality of my life has really improved over the last six, seven, eight years, because I really took control,” she says. “I said, ‘I’m going to get more sleep, I’m going to exercise, I’m not going to be too dependent on medication, although I have to take it sometimes; I’m really going to force myself to do these things,’ and it’s made a huge difference.”

Tips for a Good Night’s Sleep

  • Set a schedule. Go to bed at a set time each night and get up at the same time each morning. Disrupting this schedule may lead to insomnia. “Sleeping in” on weekends also makes it harder to wake up early on Monday morning because it resets your sleep cycles for a later awakening.
  • Exercise. Try to exercise 20 to 30 minutes a day. Daily exercise often helps people sleep, although a workout soon before bedtime may interfere with sleep. For maximum benefit, try to get your exercise about 5 to 6 hours before going to bed.
  • Avoid caffeine, nicotine, and alcohol. Avoid drinks that contain caffeine, which acts as a stimulant and keeps people awake. Sources of caffeine include coffee, chocolate, soft drinks, non-herbal teas, diet drugs, and some pain relievers. Smokers tend to sleep very lightly and often wake up in the early morning due to nicotine withdrawal. Alcohol robs people of deep sleep and REM sleep and keeps them in the lighter stages of sleep.
  • Relax before bed. A warm bath, reading, or another relaxing routine can make it easier to fall sleep. You can train yourself to associate certain restful activities with sleep and make them part of your bedtime ritual.
  • Sleep until sunlight. If possible, wake up with the sun or use very bright lights in the morning. Sunlight helps the body’s internal biological clock reset itself each day.
  • Don’t lie in bed awake. If you can’t get to sleep, don’t just lie in bed. Get out of bed and do something else, such as reading, watching television, or listening to music, until you feel tired. The anxiety of being unable to fall asleep can actually contribute to insomnia.
  • Control your room temperature. Maintain a comfortable temperature in the bedroom. Extreme temperatures may disrupt sleep or prevent you from falling asleep.
  • See a doctor if your sleeping problem continues. If you have trouble falling asleep night after night, or if you always feel tired the next day, then you may have a sleep disorder and should see a physician. Your primary care physician may be able to help you; if not, you can probably find a sleep specialist at a major hospital near you. Most sleep disorders can be treated effectively, so you can finally get that good night’s sleep you need.

(Adapted from When You Can’t Sleep: The ABCs of ZZZs, by the National Sleep Foundation, courtesy of the National Institute of Neurological Disorders and Stroke)

well well well

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Today was my doctors visit. To start off, I had to have fasting bloodwork. I hate when that happens. I am not hungry until I hear that I cannot eat at a certain time. All of a sudden, I am ravenous. It is a mind trick, since my tummy does not need it but my mind is telling it that it does. Anyhoo, got the bloodwork done and we then discussed a few of the issues I am dealing with in regards to the flare I am in.

The first issue is my over/under sleeping. As many of you know I typically suffer from insomnia several times a week. When I am in pain, like now, it happens more often. Cruel joke, but that is what happens. On the other hand, I can also sleep around the clock at times as well. It is a cruel irony that when I need to function and would like to have that insomnia, I am usually in sleep mode and vice versa. It is to the point my hubs wanted me to mention it to the doctor.

You see, he is concerned that I am not normal and something is wrong. Hmmmm, guess what? I am not normal and something is wrong…I have lupus! After discussing this with doctor, I realized that the feelings of being wierd are really pretty normal for lupies. This whole sleep/not sleeping thing is typical for us lupies. It is not normal per se, as far as normal people go, but it is indeed quite normal for those of us with lupus. I knew this all along, but hubs would not shut up about it until I asked the doctor. So, I am a “normal” lupie. Not a “normal” person but a “normal” lupie.

I sometimes think others forget that I have lupus and expect things out of me that I cannot provide. I wish I had support for these issues, but it seems that lately they have been swept under the rug and “forgotten” and it has certainly not helped me at all. You see, when I need rest, it means I need rest. If I do not rest, then I will pay for it. If I rest, then the chances are that on the other side of the rest, I will feel better, not necessarily fully productive, but better.

I am also suffering from depression as well. When I bottle up these feelings of inadequacy and inability to function “normally” it makes me sicker, which makes me more depressed, which makes me sicker and so on. A vicious cycle gets set into motion and in the end, I pay a heavy price for it.

That being said, I have resolved to stand up for myself more and take frequent rest breaks if needed and to the devil with those who do not or will not understand. I have to look out for my health and since it seems at times I am the only one who is doing that, it is imperative that I stand up to those who belittle me or make me feel useless. I am striking a blow for others out there who deal with this as well. If I can do this, so can you! We deserve to be treated with dignity and respect. I am not the only adult int his household who can do the things I do, so when I can’t, then I will get help.

In the end, this journey is really getting me down. However, I am resolving this one issue once and for all. I cannot and will not be made to feel unworthy because I am not “normal”. I am sick, with a chronic incurable disease, and if you were ill, then you would be treated with dignity and respect. That is all I want too.

Okay, I am getting off my soapbox now and will move forward. This blog is such a great thing because it allows me to vent these feelings and helps to not internalize them more so that I get sicker. Thanks for all the support! I truly appreciate each and every one of you!