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Fibromyalgia in Children

Fibromyalgia-in-Children

It’s not just an adult illness, Children & Teens can develop Fibromyalgia as well.  Fibromyalgia is a condition that causes pain in muscles and soft tissues around the body. It is an ongoing (chronic) condition. It can affect the neck, shoulders, back, chest, hips, buttocks, arms and legs. The pain may be worse in the morning and evening. Sometimes, the pain may last all day long. The pain may get worse with activity, cold or damp weather, anxiety, and stress. The condition affects about 2% to 4% of people in the U.S. It is most common in middle-aged women. But children can also have the condition.

What causes fibromyalgia?

The cause is unknown. Researchers think there may be a link with sleep problems and stress. It may also be linked to immune, endocrine, or biochemical problems.

What are the symptoms of fibromyalgia?

Each child may feel symptoms a bit differently. Chronic pain is the most common symptom. The pain most often affects the muscles and the points where muscles attach to bones. These are the ligaments and tendons.

Pain may begin in one part of the body, such as the neck and shoulders. Over time the whole body may be affected. The pain ranges from mild to severe. It may feel like burning, soreness, stiffness, aching, or gnawing pain. There may be sore spots in certain parts of the muscles. It may feel similar to arthritis, but it’s not a condition that gets worse. And it doesn’t damage muscles or bones. Other common symptoms of fibromyalgia include:

  • Medium to severe fatigue
  • Sleep problems at night
  • Depressed mood
  • Anxiety
  • Headaches
  • Missing a lot of school

The symptoms of fibromyalgia can seem like other health conditions. Make sure your child sees his or her healthcare provider for a diagnosis.

How is fibromyalgia diagnosed?

There are no tests that can confirm a diagnosis of fibromyalgia. Instead, diagnosis is based on your child’s symptoms and a physical exam. Blood tests, X-rays, or other tests may be done. These are to rule out other causes of your child’s symptoms.

How is fibromyalgia treated?

Your child’s healthcare provider will create a care plan for your child based on the following:

  • Your child’s age, overall health, and medical history
  • How sick your child is
  • How well your child handles certain medicines, treatments, or therapies
  • The opinion of the healthcare providers involved in your child’s care
  • Your opinion and preference

There is no cure for fibromyalgia, but the symptoms can be managed. Mild cases may get better with stress reduction or lifestyle changes. Treatment may include:

  • Anti-inflammatory medicines, to ease pain and help your child sleep
  • Other pain medicines
  • Exercise and physical therapy, to stretch muscles and improve cardiovascular fitness
  • Relaxation methods to help ease pain
  • Heat treatments
  • Cold treatments once in a while
  • Massage
  • Short-term use of antidepressant medicine at bedtime, to improve sleep and mood

Talk with your child’s healthcare providers about the risks, benefits, and possible side effects of all medicines.

Helping your child live with fibromyalgia

It is not known if fibromyalgia in a child continues into adulthood. The pain and lack of energy can affect your child’s quality of life and may cause depression. Talk with your child’s healthcare provider if you think your child has depression. Help your child manage his or her symptoms by sticking to the treatment plan. This includes getting enough sleep. Encourage exercise and physical therapy, and find ways to make it fun. Work with your child’s school to make sure your child has help as needed. Your child may also qualify for special help under Section 504 of the Rehabilitation Act of 1973.

When should I call my child’s healthcare provider?

If your child’s symptoms get worse or there are new symptoms, tell the healthcare provider.

Key points about fibromyalgia

  • Fibromyalgia is a chronic condition that causes pain in muscles and soft tissues all over the body.
  • It is most common in middle-aged women. But children can also have the condition.
  • Symptoms may also include lack of energy (fatigue), sleep problems, headaches, and other problems.
  • It is not known if fibromyalgia in a child continues into adulthood.
  • The pain and lack of energy can affect your child’s quality of life and cause depression.

Next steps

Tips to help you get the most from a visit to your child’s healthcare provider:

  • Know the reason for the visit and what you want to happen.
  • Before your visit, write down questions you want answered.
  • At the visit, write down the name of a new diagnosis, and any new medicines, treatments, or tests. Also write down any new instructions your provider gives you for your child.
  • Know why a new medicine or treatment is prescribed and how it will help your child. Also know what the side effects are.
  • Ask if your child’s condition can be treated in other ways.
  • Know why a test or procedure is recommended and what the results could mean.
  • Know what to expect if your child does not take the medicine or have the test or procedure.
  • If your child has a follow-up appointment, write down the date, time, and purpose for that visit.
  • Know how you can contact your child’s provider after office hours. This is important if your child becomes ill and you have questions or need advice.

Medical Reviewers:

  • Brown, Kim, APRN
  • Horowitz, Diane, MD

A Puzzling and Painful Condition Fibromyalgia and its treatments

 

Image result for Painful Condition

You’ve probably heard of fibromyalgia, but you may not know what it is. Fibromyalgia is a long-term (chronic) pain condition that affects 5 million or more Americans ages 18 and older. For unknown reasons, most people diagnosed with fibromyalgia are women, although men and children also can be affected. People with certain disorders, such as rheumatoid arthritis or lupus, may also have fibromyalgia, which can affect their disease course and treatment.

Fibromyalgia can take a powerful toll on health, well-being, and quality of life. “People with fibromyalgia suffer from severe, daily pain that is widespread throughout the body,” says Dr. Leslie J. Crofford, an NIH-supported researcher at Vanderbilt University. “Their pain is typically accompanied by debilitating fatigue, sleep that does not refresh them, and problems with thinking and memory.”

People with fibromyalgia often see many doctors before finally receiving a diagnosis. The main symptoms—pain and fatigue—overlap with those of many other conditions, which can complicate the diagnosis.

“To make things more challenging, there are no blood tests or X-rays that are abnormal in people with the disorder,” says Crofford. With no specific diagnostic test, some doctors may question whether a patient’s pain is real. “Even friends, family, and coworkers may have a difficult time understanding the person’s symptoms,” Crofford says.

A doctor familiar with fibromyalgia can make a diagnosis based on the criteria established by the American College of Rheumatology. Diagnostic symptoms include a history of widespread pain lasting more than 3 months and other symptoms such as fatigue. In making the diagnosis, doctors consider the number of areas throughout the body where the patient had pain in the past week, and they rule out other causes of disease.

What causes fibromyalgia isn`t fully understood. Many factors likely contribute. “We know that people with fibromyalgia have changes in the communication between the body and the brain,” Crofford says. These changes may lead the brain to interpret certain sensations as painful that might not be bothersome to people without the disorder.

Researchers have found several genes that may affect a person’s risk of developing fibromyalgia. Stressful life events may also play a role.

Fibromyalgia isn’t a progressive disease, so it doesn’t get worse over time and may even improve. It’s never fatal, and it won’t harm the joints, muscles, or internal organs.

Medications may help relieve some—but not all—symptoms of fibromyalgia. “Drug treatments by themselves don’t result in remission or cure of fibromyalgia,” says Crofford. “We’ve learned that exercise may work as well as or better than medications. In addition, therapies such as tai chi, yoga, and cognitive behavior therapy can also help to reduce symptoms.”

People with fibromyalgia often have the best results when treated with multiple therapies. “It’s critically important for health care providers to help patients develop an understanding of fibromyalgia, and to provide realistic information about treatments, with an emphasis on using exercise and other physical therapies in conjunction with medications,” Crofford says.

Crofford and her colleagues are exploring whether a treatment called TENS (transcutaneous electrical nerve stimulation) can help people with fibromyalgia exercise more comfortably and reduce pain. She and other NIH-funded teams are also seeking markers of fibromyalgia in the blood that might ultimately lead to more targeted and effective treatments.

Treatments Worth Trying

From medication to lifestyle changes, these tactics can help fight fibro.

  • If you’re living with fibromyalgia, you already know that there is no cure for the pain and fatigue you often feel. Fortunately, with medications, self care strategies and lifestyle modifications, living with fibromyalgia can be a little easier.

Medications

There are three FDA-approved drugs for use specifically as fibromyalgia treatments, and several used off-label (meaning it is used for but not FDA-approved for a condition). Though these drugs were originally developed for other conditions, they have proven effective for fibromyalgia also.

  • Anti-epileptics. Pregabalin (Lyrica) has shown benefits in relieving anxiety, some sleep problems and pain in people with fibromyalgia. Another medication, gabapentin (Neurontin) is sometimes used as a fibromyalgia treatment, but is not approved as such.
  • Antidepressants. Duloxetine (Cymbalta) and milnacipran (Savella) are dual-acting norepinephrine and serotonin reuptake inhibitors that are approved for use in people with fibromyalgia. They raise levels of neurotransmitters known to prevent pain transmission. Other antidepressants that provide relief include amitryptiline hydrochloride (Elavil,Endep), fluoxetine (Prozac), paroxetine (Paxil) and sertraline (Zoloft), but they are not approved specifically for use with fibromyalgia.

Doctors often prescribe other types of medications to treat such symptoms as pain and fatigue, including:

  • Analgesics, including tramadol (Ultracet,Ultram)
  • Muscle relaxants, such as cylobenzaprine (Cycloflex,Flexeril)
  • Fatigue medications, such as modafinil (Provigil)

Exercise

When you’re exhausted and in pain, exercise might be the last thing on your mind. But, physical activity is very beneficial for people with fibromyalgia. Before you start exercising, talk to your doctor about which activities are best for you.

“The goal is to start low and go slow, in terms of increasing physical activity,” says Leslie J. Crofford, MD, chief of rheumatology and women’s health at the University of Kentucky Hospital in Lexington. “We tell people to start at their capacity – no matter how brief that is – and increase to a five-minute warm up; 30 minutes of aerobic activity, such as walking; a five-minute cooldown; and then a stretch. At that point, you’re ready to begin strength training.”

In addition to pain relief, exercise has many benefits for people with fibromyalgia.

“It may reduce fatigue, and it may boost confidence,” says Crofford. “People believe they can do other things if they can stick with an exercise program.”

Stress Reduction

Research shows that when a person in pain experiences stress, they feel more pain. In a 2004 study funded by the Arthritis Foundation and the National Institutes of Health (NIH), Laur­ence A. Bradley, PhD, a professor of medicine at the University of Alabama at Birmingham, and his colleagues compared pain perception and neurologic responses of women with fibromyalgia to healthy women as they revisited stressful personal events.

Researchers applied heat to the women’s forearms. Even though all the women thought about equally stressful events, the fibromyalgia patients reported higher levels of pain from the heat.

“Teaching people to better cope with stressors may reduce the impact of those stressors on the perception of the unpleasantness they feel,” Bradley suggests.

Biofeedback

Biofeedback is a mind-body technique used to teach people how to control involuntary body functions such as heart rate, blood pressure and muscle clenching.

“Biofeedback equipment gives a patient information about specific physiological functions so they can work to control those functions,” says Mark D. Litt, PhD, a professor of behavioral sciences at the University of Connecticut Health Center in Farm­ing­ton, and researcher of biofeedback.

“My patients are given information about the state of chewing muscles along their jaw joint, the ones that make your mouth clench,” says Litt. “Through electrodes attached to the body, a machine lets people know when their muscles clench. People then try ways to lower the muscle tension. Most people find they can do it if they can find a way to relax. For example, some people go into mini trances, and some people count in their heads.”

Lifestyle Changes

When living with fibromyalgia, look at your life holistically, considering all the ways fibromyalgia affects your life. Here are a few adjustments to consider:

  • Where do you spend most of your time?Are you hunched over a computer or walking a lot in uncomfortable shoes? Change what you can to make yourself more comfortable.
  • Are you getting enough good quality sleep?A lack of deep sleep is thought to contribute to the fatigue, concentration and short-term memory problems experienced by people with fibromyalgia. Consistency is key when it comes to sleep. Each night, follow the same bedtime ritual as a signal to your body that it’s time to sleep. Whether it’s taking a warm bath, reading a book, listening to music or doing a crossword puzzle, find the ritual that is right for you. If you still can’t get to sleep, consider talking to your doctor about sleep aids.
  • Have you considered the power of touch?Some research suggests that massage can assist in fibromyalgia pain management. Researchers from the Touch Research Institute at the University Of Miami School of Medicine found that massage therapy provided multiple benefits, including improved sleep, decreased joint pain and lowered stress hormones.
  • Have you given acupuncture a shot?Some patients find relief from acupuncture. In one study from the Mayo Clinic in Rochester, people who received true acupuncture showed greater improvements in anxiety and fatigue than those who received a fake procedure.

No matter what you try, the most important thing is to find a plan that works for you, according to Stephen T. Wegener, PhD, an associate professor in the department of physical medicine and rehabilitation at The Johns Hopkins School of Medicine in Baltimore.

“It may be that different treatments work for different people,” Wegener says. “There’s considerable literature that [shows] if people choose and get the treatment they want, they tend to have better outcomes.”

References:

Effect of transcutaneous electrical nerve stimulation on pain, function, and quality of life in fibromyalgia: a double-blind randomized clinical trial. Noehren B, Dailey DL, Rakel BA, et al. Phys Ther. 2015 Jan;95(1):129-40. doi: 10.2522/ptj.20140218. Epub 2014 Sep 11. PMID: 25212518.

New insights into the benefits of exercise for muscle health in patients with idiopathic inflammatory myositis. Alemo Munters L, Alexanderson H, Crofford LJ, Lundberg IE.Curr Rheumatol Rep. 2014 Jul;16(7):429. doi: 10.1007/s11926-014-0429-4. Review. PMID: 24879535.

 

 

Why Does Fibromyalgia Hurt More At Night?

young attractive woman in sad and depressed face expression with eyes wide open lying in bed looking sick and unable to sleep suffering depression , nightmares or insomnia sleeping disorder

By ,

When does your pain kick into high gear? For some it’s first thing in the morning, others at random times, but for most with fibromyalgia, the pain seems amplified at night. You know the routine: you try to be social and hang with a friend for dinner, but you have to come home early because you’re in agony. Or you actually made it to work today and successfully managed to block out the pain all day, but now that you’re home it feels like all the pain you were supposed to feel is happening right now. Sleep is not even an option at this point. You lie there, tossing if you’re able, with your muscles tensed and in more pain than you can remember. Of course, there are other nights where the pain isn’t that intense. So what gives? As always, a journal of diet and activities can be helpful in determining if there are any particular triggers that seem to exacerbate the pain. But what if there still is no apparent explanation?

WebMD offers one possible reason for what appears to be an oddity: “Research shows that with fibromyalgia, there is an automatic arousal in the brain during sleep. Frequent disruptions prevent the important restorative processes from occurring. Growth hormone is mostly produced during sleep. Without restorative sleep and the surge of growth hormone, muscles may not heal and neurotransmitters (like the mood chemical serotonin) are not replenished. The lack of a good night’s sleep makes people with fibromyalgia wake up feeling tired and fatigued. The result: The body can’t recuperate from the day’s stresses — all of which overwhelms the system, creating a great sensitivity to pain.” This sounds like a very vicious cycle.

Some speculate that by the end of the day our minds are beginning to clear as we focus on resting which makes us more aware of our fibromyalgia pain. However, conventional wisdom dictates that by the end of the day our minds have been flooded with information gathered by our senses and processed in our brains and bodies. Indeed, this is why we must sleep at night so that we can process all we have absorbed and refresh our bodies. Thus, this flood makes us the least clear at night. Compare it to the clarity you have when you first wake each day. What seems like a much more reasonable conclusion is that the body itself is fatigued just from the activities of the day. Therefore, by the evening, it takes far less to stress the muscles and create more inflammation. In fact, while it may seem like an exaggeration, the muscles of fibromyalgia patients might be mildly compared to rigor mortis wherein the muscles are always contracted. Because fibro patients cannot usually relax their muscles.

Since fibromyalgia patients almost universally struggle with good and restful sleep, WebMD goes on to offer tips to facilitate better sleep, specifically for fibro patients:

  • Take a soothing, warm bath in the evening (provided you have the energy to get in the tub).
  • Bruch your body with a loofah or long handled brush in the bath (your ability to do this may vary from day to day given your level of pain).
  • Ease painful tender points with a self-massage device, such as a tennis ball.
  • Practice yoga or other stretching exercises to relax (Amazon offers several yoga DVD options specifically for fibromyalgia).
  • Listen to calming music (Pandora has a station called “Calm Meditation Radio” that sounds just like what you’d hear at a spa during a massage).
  • Meditate to calm intrusive thoughts and tension.
  • Sleep in a dark room (consider an eye mask if necessary).
  • Keep the room as quiet as possible (or use a white-noise machine or fan to drown out subtle sounds).
  • Make sure the room temperature is comfortable.
  • Avoid foods and beverages that contain caffeine, including teas, colas, and chocolate.

It seems there may be a variety of reasons for fibromyalgia pain to increase at night, but all of them point to muscles as the key player. Again, try a journal that keeps up with food and basic activities for a month or so and see if you find any common themes or triggers. Also try the list of tips here, knowing that there are going to be days when even just one of the tips is an impossible task. Simply do what you can and share your results with the rest of us!

To the Person Who Told Me Fibromyalgia Doesn’t Exist

young woman walking into sunset in the city

By Mariana Solarte Caicedo, 

I may not be able to explain what fibromyalgia is. I’ve heard it’s a muscular thing, a nervous system thing and a genetic thing. But for me, it’s a real thing.

I’ve been dealing with it for the past four years when the symptoms started a few months after my first depressive episode. All of the sudden, at 18, I was exhausted. I had no energy, I found myself sleeping more often and keeping up with life and daily activities were way too much for me.

If I went out one night, I had to spend the rest of the weekend recovering from the exhaustion that it caused. I could sleep for 12 hours and still feel like I’ve been sleep deprived for three months.

And the fatigue — oh, the fatigue. Have you ever felt tired after taking a shower? I have. You can’t imagine how much energy you need to stand up on the shower while using your arms to apply shampoo and wash it all off. It’s an immense effort.

When the shower is finally over, you have to decide what to clothes to wear and put them on. But you’re exhausted, like you just ran 50 marathons. So you just sit on your bed, looking at your closet and wishing tiny fairies would pick up your clothes and dress you while you just rest there.

Clear? OK, let’s continue because we’re far from being over.

Imagine having your skin covered in dark, purple bruises. They’re the kind you get when trip over a desk, and they hurt just by touching them. Yep, those. Now imagine one little kid per bruise, touching it, poking it and pressing it with a tiny but strong little finger — all day long and all over your body.

In addition, imagine your body covered in needles that randomly pressed into your skin. It makes you feel like you have a thorn somewhere in your muscles. As every part of your body is in pain, but you can’t locate the pain, and you aren’t comfortable in any position. Your legs can’t stand being up for a long time, but when you sit down, your back hurts. And when you lie down, your arms hurt.

I forgot the stiffness. Your muscles feel like they were replaced by concrete overnight, and you can barely move. And it hurts. So you have to use your magic gadgets — a cane in my case or a wheelchair for others.

Amazing, I know.

Let’s continue to the cognitive part. In addition to all of that, you start forgetting things. You forget where you are, what you were going to do or what you just said. You have trouble concentrating and your memory sucks.

How could I forget to mention fibromyalgia’s BFFs: depression and anxiety? And this story cannot end without mentioning dry mouth, the swelling of legs and feet, migraines, oversensitivity to light and sound, body temperature issues, horrible menstrual pains, restless legs syndrome and digestive problems. And that’s it for now (that’s all I can remember, anyway).

Sometimes — most of the time, to be honest — you get all of the symptoms together. And there’s no cure for it. None. You can use palliative care in order to live your life in the most “normal” and “functional” way.

So to the person who told me fibromyalgia doesn’t exist, the next time you judge a condition you know nothing about, try talking to the people who live with it daily. More research may be needed for fibromyalgia, but it does exist. I live with it the best way I can, and while I’ll have awesome days when I forget most of the symptoms, there are days in which getting out of bed is physically impossible.

I’m lucky enough to be able to live my life in the most functional way I can by walking with a cane every now and then and canceling plans when needed. But I know people whose lives have been completely impacted by fibromyalgia.

So please, before you say fibromyalgia doesn’t exist, think about having all of these symptoms for just one day.

This was published by The Mighty.

Groundbreaking Study Shows Prescription Painkillers Prolong Chronic Pain

By Anna Hunt,

A research team out of University of Colorado-Boulder has found that prescription opioids may actually worsen chronic pain. The study also discovered that these drugs may in fact prolong the condition that they are supposed to help placate. This may explain why in the U.S., prescriptions of opioids, such as methadone, oxycodone (such as OxyContin®) and hydrocodone (such as Vicodin®), have quadrupled since 1999.

Pain after disease/damage of the nervous system is predominantly treated with opioids, but without exploration of the long-term consequences. We demonstrate that a short course of morphine after nerve injury doubles the duration of neuropathic pain. (Source)

There is little contention to the claim that prescription painkillers are dangerous. They have been responsible for over 183,000 deaths over the last 15 years. Some particular brands have killed thousands. Take Vioxx, for example. This painkiller killed over 60,000 before it was pulled off the market in 2004. In the year prior, Merck made $2.5 billion from sales of Vioxx, which was heavily marketed via direct-to-consumer advertising.

“There’s an ongoing death rate from use of pain medications as prescribed. So, even as prescribed, they’re highly dangerous and they are open to abuse.” ~ Dr. Margaret Gedde, owner and founder the Clinicians’ Institute of Cannabis Medicine (Source)

Death isn’t the only risk of prescription painkillers. Misuse, abuse and addiction are rampant in the United States. For example, in 2014, almost 2 million Americans abused or were dependent on prescription opioids. Furthermore, on any given day, 1000 people on average are treated in emergency situations for the misuse of these drugs.

Why are we putting ourselves at such great risk? Based on the research out of University of Colorado-Boulder (UC-Boulder, it seems prescription painkillers aren’t actually helping people address chronic pain but are very effective in creating repeat customers for Big Pharma.

The Study: Painkillers Worsen Chronic Pain

Many people take prescription painkillers on a regular basis because the drugs are supposed to help them manage chronic pain. But a 2016 study out of CU-Boulder found that opioid use actually increases and prolongs chronic pain in rats. The study researchers concluded that “prolonged pain is an unrealized and clinically concerning consequence of the abundant use of opioids in chronic pain.” (Source)

During the study, scientists discovered that a five-day morphine treatment in rats resulted in chronic pain that continued for months. The treatment triggered the release of pain signals from the rats’ immune cells located in the spinal cord – also called glial cells. These cells play an important role in clearing out infection-causing microorganisms. When the body is experiencing pain, glial cells are placed on high alert as the body prepared for the clearing process.

During the opioid study, morphine treatment in rats resulted in opioids sending repeated signals to the glial cells. This increased the activity of these nerve cells in the spinal cord, resulting in intensified chronic pain that continued for several months.

“We are showing for the first time that even a brief exposure to opioids can have long-term negative effects on pain. We found the treatment was contributing to the problem.” ~ Peter Grace, CU-Boulder Assistant Research Professor and Faculty Member in the Department of Psychology and Neuroscience (Source)

“The implications for people taking opioids like morphine, oxycodone and methadone are great, since we show the short-term decision to take such opioids can have devastating consequences of making pain worse and longer lasting.” ~ Linda Watkins of CU-Boulder Professor (Source)

The study was published in the Proceedings of the National Academy of Sciences. Although it was conducted on rats, if the findings hold true to humans, this would help explain the vicious cycle of prescription painkiller abuse and the growing epidemic of opioid addiction.

Source: www.wakingtimes.com

About the Author

Anna Hunt is co-owner of OffgridOutpost.com, an online store offering GMO-free healthy storable food and emergency kits. She is also the staff writer for WakingTimes.com. Anna is a certified Hatha yoga instructor and founder of Atenas Yoga Center. She enjoys raising her children and being a voice for optimal human health and wellness. Visit her essential oils store here. Visit Offgrid Outpost on Facebook.

When There is No Cure For Your Chronic Pain

Related image

By LAURIE HIGGINS,

HYANNIS – Usually pain is a symptom of a disease. But for those who suffer from fibromyalgia, pain is the disease.

Fibromyalgia is a chronic syndrome with no known cure. People who have it suffer from deep muscle pain, insomnia, chronic daily fatigue, anxiety and depression. It’s a condition that frustrates both patients and doctors.

“We don’t know what fibromyalgia is,” explained rheumatologist Michelle Costa, DO of Falmouth Specialty Care. “Obviously people are in pain and they are looking for answers from their doctor and we just don’t have them.”

Rheumatoid arthritis is the most common inflammatory arthritis in the world, even though it only affects about 1 percent of the population, she said. Lupus, another autoimmune disorder, affects about half as many people. Fibromyalgia is estimated to affect about 4 percent of the population worldwide.

“This is more common than the most common inflammatory arthritis,” she said. “And the symptoms are consistent across the world.”

How It’s Diagnosed

Fibromyalgia is a very simple diagnosis to make, said Dr. Costa. Doctors do a physical exam, run some basic tests and listen to the patient’s symptoms. Since almost every patient with fibromyalgia also has at least one overlapping symptom, doctors look for the following things:

  • Irritable bowel syndrome
  • Chronic headaches
  • Restless legs
  • TMJ
  • Nerve pain or numbness
  • Non-restorative sleep
  • Tendonitis
  • Bursitis

“It’s a very poorly understood syndrome,” she said. “It has not been identified as a disease. It’s a collection of symptoms. We are now more accurately calling this ‘centralized pain syndrome’ and when we use the word ‘centralized,’ we mean brain and spinal cord central nervous system. We currently believe that it’s a pain processing disorder – almost like the brain is amplifying abnormal signals and making what shouldn’t be painful, painful.”

Despite what you may see on television ads, there is no surefire medication that will help. Prescriptions specifically marketed for fibromyalgia are minimally helpful on a good day, according to Dr. Costa. Pain meds don’t work for fibromyalgia and narcotics have actually been associated with worsening pain thresholds.

Sleep medications like Ambien don’t improve sleep quality, she said. Plus, patients with fibromyalgia have a lot of multiple chemical sensitivities and don’t tolerate medications well.

The One Thing That Helps

But there is one thing that does help: regular exercise six days a week that is strenuous enough to get your heart and breathing rates up.

“We know for sure from large good quality studies that regular gentle exercise improves functioning,” Dr. Costa said. “It doesn’t make people pain-free, but it makes them get better quality sleep, they have less pain and they are better able to function.”

The hardest part about prescribing exercise is getting people to do it. Dr. Costa said that patients with fibromyalgia have what’s called “exercise intolerance.” That means that anytime they do anything extra physically like mow the lawn, they are in worse pain the next day.

“It takes a good three weeks or so, give or take, to break through that cycle and, unfortunately, getting someone when they are hurting and fatigued to exercise for 30 minutes six days a week is rare,” she said. “But it is the only thing that has been shown to really be consistently helpful in fibro.”

Pool therapy is considered to be one of the best therapies for people with fibromyalgia, but Dr. Costa said that it is hard to get insurance companies to pay for it. She also sites a shortage of pools on the Cape as being a deterrent. Physical therapy can help, but only if patients continue to do the exercises they learn after the therapy is over.

Other therapies that have shown success in helping people manage symptoms are cognitive behavioral therapy, yoga and mindfulness meditation. Dr. Costa said that all three things can be bought in DVD form or downloaded as a phone app for free or fairly inexpensively.

Dr. Costa has heard anecdotally that people who switch to a strict vegan diet like that recommended by Michael Greger, MD can lessen symptoms .

“It’s a really tough situation because we don’t have good answers for patients and all the answers we do have require a tremendous amount of work on their part,” she said.

Because there is no cure or good medication, Dr. Costa does not provide a continuum of care for fibromyalgia patients. She sees them for an initial visit to diagnose them and invites them to the monthly lecture she gives on all of the treatments and latest advances. Then she refers them back to their primary care physician with her best recommendations.

She can tell which patients at her clinics will have the best prognosis and it’s always the ones who want to learn as much as possible about fibromyalgia, she said.

Because education is so empowering, Dr. Costa refers patients to a TED talkgiven by Elliot Krane, MD, a pediatric anesthesiologist and the director of pain management at Lucile Packard Children’s Hospital at Stanford. The talk is titled, “The Mystery of Chronic Pain.” In it Dr. Krane talks about central nervous system pain disorders of which fibromyalgia is a subset. The talk gives Dr. Costa hope for a future cure.

“Our understanding of this process is in its infancy, but just because we don’t understand something now, doesn’t mean we won’t later,” she said.

To attend one of Dr. Costa’s monthly talks about fibromyalgia, call 508-495-7595 to reserve a space. The next clinic is scheduled for December 21.

Source of the study:  One Cape Health News

13 Things People With Anxiety Want You to Know

Image result for 13 Things People With Anxiety Want You to Know

By Andrea Barbalich,

“People think of anxiety as a character in a Woody Allen film,” says Jamie Howard, Ph.D., a clinical psychologist in the Anxiety and Mood Disorders Center at the Child Mind Institute in New York City. “People who have it are kind of neurotic. They’re being silly, and they should just knock it off.” While this portrayal may be funny in a movie, it’s anything but for those who are coping with the disorder. And that’s a big number: Anxiety disorders are the most common mental illness in the United States, affecting 18 percent of adults, according to the National Institute of Mental Health. Here are a few things those 40 million people would really like you to know.

1. We don’t like worrying.

It’s a common view that people with an anxiety disorder want to worry. Not so, says Howard: “They would like to be more carefree.” But they can’t because a biological misfiring in their brain that causes them to feel threatened even when they’re safe. “They believe that what they’re worrying about is a legitimate threat,” she says. “They believe it’s in their best interest to worry about it.”

“When you have an anxiety disorder, your whole fight-or-flight response takes off,” Howard says. “Your brain interprets a situation as threatening and sends a signal to your body to deal with it.” Your body in turn has a strong physical reaction: a rapid heartbeat, shallow breathing, sweating, and trembling. “It’s very difficult to feel that much distress and be that alarmed by so many small things in your world,” she says.

3. Decisions are difficult for us.

Given how the body reacts, the person with anxiety feels a strong physical urge to avoid the situation causing the problem. So whether it’s choosing a piece of furniture for the living room or finishing a paper for a college class, people with anxiety become paralyzed by it. What’s difficult but doable for most people is nearly impossible for them.

“The inability to get things done may look like procrastination or laziness,” says Howard, “but it’s not as simple as that.” Underneath is fear: “Very bright students don’t turn in a paper because they’re worried someone won’t think it’s good. They’re not in danger, but their body perceives the situation as such a big threat that they avoid it.” They wind up hurting themselves, she says: “They wish they could turn that paper in.”

5. We feel like failures—and sometimes we are.

Not being able to do seemingly simple things isn’t much of a confidence booster. The thought that “I can’t do that” is ever present—and makes people with anxiety want to avoid situations that make them feel even more like failures. So smart kids will end up failing classes or smart adults will have trouble at work because they can’t meet deadlines.

6. We’re not antisocial.

Anxiety affects people’s social lives too. Many people with anxiety won’t go out with their friends, for example, because being in a large crowd or drinking alcohol triggers an out-of-control feeling. “So they get labeled as someone who isn’t fun,” says Howard. “But it’s not true. They would love to be able to go out, but they feel scared.” Their friends take it personally, but it’s not personal. It’s a perception of threat. “They lose friends because they never accept invitations.”

Some supportive things to say: “You seem really anxious. That must be horrible. Is there anything I can do to help?”

8. …but always accommodating us isn’t helpful.

Say you’re having a party and you want to invite 10 people, and you know your friend with anxiety won’t come if you have more than three. Don’t cut down your guest list. “Go ahead and have the party and tell your friend you hope she can be there,” Howard says. It may sound cruel, but it’s actually kind. “Avoidance is what maintains the anxiety,” she says. So if you’re helping your friend sidestep a situation that makes her uncomfortable, you’re not doing her any favors. A more supportive approach: “See your friend separately in a smaller group, but keep inviting her to the larger party. If she’s receiving good treatment, she’ll be coached to face her fears.”

9. We’re not weak.

People with anxiety disorders are actually coping with a lot more than the average person. They get criticized (“You mean you can’t just pick out a sofa?”), but the person who says that can pick out a sofa without any physical reaction. “If you don’t put yourself in other people’s shoes, you think they’re being dramatic and making life more difficult than it needs to be,” says Howard.

You can’t make people with anxiety more functional and less anxious. Likewise, pep talks trying to force people to do things they don’t want to do aren’t going to work. “It feels invalidating because it’s usually coming from someone who doesn’t grasp how challenging it is for people to do that they’re being asked to do,” says Howard.

11. …but a qualified mental-health professional can help.

Anxiety disorders are very treatable with cognitive behavioral therapy, sometimes accompanied by medication (for moderate to severe cases).

12. We’re a work in progress.

Treatment takes a minimum of 12 weeks. “Many people will see some improvement in that time, and for some people you’ll see it quickly if it’s a simple, straightforward case of anxiety,” says Howard. “But more severe cases will take longer and the improvement will be smaller.” Either way, they don’t get better overnight.

“It’s not their personality. It’s not who they are,” says Howard. “An anxiety disorder is an illness they’re struggling with and that has consequences, but they shouldn’t be defined by it.”

8 Things to Remember If You Love Someone With Chronic Pain

Chronic pain is a condition that we all cringe when we hear, right? Imagine being a person that suffers from pain for more than 3 months. We also know there are many conditions which cause chronic pain such as back problems, arthritis, migraines and so on. It’s sad but not much more is said about how prevalent this condition may be. Unfortunately, it’s extremely common. Over 25 million people suffer from chronic pain in the US but a discussion of their problems goes under the radar. Chronic pain is not just physical – it’s an emotional journey. If you love someone that suffers from chronic pain, you will likely have to accommodate their situation as necessary.

Beyond the physical sensation of pain, here are 8 reasons why they suffer more than you think.

1. Chronic pain is invisible

Roughly 96% of illnesses are invisible meaning they do not have any external signals that point towards it such as a walking stick or wheelchair. After dealing with it for so long, they no longer grimace or cry every time they’re in pain.  It’s possible they look perfectly fine despite being in pain.

It’s easy for it to be ignored as a disability simply because it’s unseen. Therefore their problems can be subject to statements such as “just fight through it” which are dismissive. Chronic pain isn’t the same as the common cold or even a broken leg.

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2. It leads to depression

25% to 75% of chronic pain sufferers experience moderate to severe depression. This, in addition to being in frequent pain means it’s very easy to withdraw and stop engaging in day to day activities. It strains relationships with friends and family which in turn decreases their quality of life further. It is a vicious cycle that even affects how effective pain treatment is.

As Rachel Benner says, “it’s important for them to incorporate structure, activities, socialization, purpose and meaning into each day of their lives.”

3. They don’t know how it started

It’s possible to have pain without a clear origin or an injury that seemed to appear out of nowhere. Having a reason for an injury is helpful – you can be more careful next time. More importantly, it provides closure. Without a reason, prolonged pain becomes becomes completely meaningless and feels like terrible bad luck.

Bad luck should be missing the bus to work. Not years of pain.

Suffering without meaning creates questions that demand answers. However, those answers either don’t exist or require a very long time to discover. Both possibilities have adverse effects on their mood.

4. They don’t know if it’ll end

Especially if the person is young, this causes incredible amounts of despair. They start to wonder whether they can handle being in pain every day for the next 10, 20, or 30 years.

Here’s the kicker – it is possible there’s no end. It’s possible they could have to suffer from pain for the rest of their lives and this becomes more real to them the longer it persists.

5. They blame themselves

There’s an expectation to have gotten used to the pain after a while the same way one might get used to a walking stick. It’s easy to self-criticize for not being able to do certain things you used to like stay out with friends or complete work on time. Sometimes, they’ll want to fight the pain and if they fail, they’ll blame themselves for not working hard enough. This can lead to self-loathing and feelings of guilt because they cannot live life at the same pace as their friends and family.

Living exactly the same life as your peers is unrealistic when you suffer from chronic pain. The expectation to do so creates a burden they blame themselves for.

6. They aren’t making a mountain of a molehill

People often underestimate chronic pain. In combination with chronic pain being an invisible illness, they can often hear the phrase ‘you don’t look ill’ turn to ‘it can’t be that bad’.

We’ve all been in pain but it’s surprisingly difficult to imagine having a pain that lasts literally every day. It might be tempting to try motivating them using a pep-talk but it can result in guilt tripping which is be incredibly demotivating. It’s important not to use throwaway lines like ‘you’ll get over it’ because it distances you from the problem and isolates those with chronic pain.

7. It’s exhausting

Chronic pain requires a lot of energy. It’s like having four flat tires and half a tank of gas then starting a cross country tour.

Every activity ranging from getting out of bed to washing dishes to waiting for the bus takes a significant amount of energy. As a result of this, they might have to cancel plans and end the day early. Loving someone with chronic pain means cutting them some slack or planning more low-key events with them.

8. They appreciate your support

Suffering from chronic pain can feel lonely and hopeless. The relationship between a person and their pain is dynamic. It can change from apathy to frustration to hopelessness over time. These changes on a persons outlook on life and their pain are difficult to deal with especially if they become consumed with frustration. The changes are unique for every person so there’s no one-size-fits-all approach.

As you can see, chronic pain is just as emotional as it is physical. Having a person who simply listens and tries their best to understand can make that journey much easier.

A supportive friend is invaluable.

Your support is treasured dearly!

Anxiety In Your Head Could Come From Your Gut

PHOTO: Doctors and scientists are further exploring the connection between gut bacteria and mental health.

By SUSAN DONALDSON JAMES,

Dr. James Greenblatt, a Boston-area psychiatrist, had a puzzling case: a teenager arrived in his office with severe obsessive–compulsive disorder (OCD), as well as attention deficit hyperactivity disorder (ADHD) and an array of digestive problems.

“Mary’s parents had been running around for many years and she’d had a poor response to medicine,” said Greenblatt, founder of Comprehensive Psychiatric Resources Inc. in Waltham, Mass. “When a patient doesn’t respond, that’s a red flag.”

Greenblatt first did a simple urine test for the metabolite HPHPA, the chemical byproduct of the clostridia bacteria, and found that it was elevated. He put her on a course of high-powered probiotics to boost her good bacteria, followed by antibiotics, and her levels began to “dramatically” go down, he said.

After six months, Mary’s symptoms began to disappear. And by a year, they were gone. Today, three years later, Mary is a senior in high school and has no sign of either mental disorder.

Greenblatt does not practice alternative medicine; his expertise is in psychopharmacology and he is a clinical faculty member at Tufts Medical School.

“I start with integrative medicine, but I have my prescription pad right by my side,” he told ABCNews.com.

Greenblatt, like many others, are beginning to recognize the power of healthy gut bacteria. The average adult carries up to five pounds of bacteria — trillions of microbes — in their digestive tract alone.

A recent study in the journal Science showed that thin and fat people have different bacteria — a discovery that could lead to weight-loss programs. Doctors have also been using fecal transplants to seniors when their gastrointestinal health is compromised in nursing home living.

And now, scientists think there may be a link between what’s in your gut and what’s in your head, suggesting that bacteria may play a role in disorders such as anxiety, schizophrenia and autism. In some patients, the strep bacterium has been linked to OCD in a condition known as PANDAS.

A study published in Nutritional Neuroscience from The Great Plains Laboratory, has shown that HPHPA levels are much higher in the urine of autistic children. Those treated with antibiotics effective against the bacteria clostridia show a decrease in symptoms.

Babies are born with a sterile digestive tract and first acquire their bacteria while traveling through the birth canal and get more in breast milk and in the world outside the womb through contact with other people.

Greenblatt said he had treated hundreds of patients for dysbiosis, a condition of microbial imbalances on or inside the body. “It’s a more common scenario than we know,” he said.

Scientists are so far unable to identify every strain of bacteria, but they can test for the chemical byproducts that they produce, according to Greenblatt.

He said he checks every patient for HPHPA with a simple organic acid urine test before moving ahead with medications to treat symptoms.

“Eight out of 10 people are fine,” he said. “But in the two patients where it’s elevated, it can have profound effects on the nervous system.”

“I don’t know why this test isn’t done on every psychiatric patient,” he said. ‘I question that every day.”

HPHPA causes deactivation of an enzyme so that dopamine cannot be converted to the neurotransmitter neuroepinephrine, Greenblatt said, and that causes a build-up of dopamine.

“We know elevated levels in the dopamine gene cause agitation,” he said, citing medical literature and case studies.

In one 2010 study at McMaster University in Canada, published in the journal Communicative and Integrative Biology, scientists found a link between intestinal microbiota and anxiety-like behavior.

Researchers compared the behaviors of normal 8-week-old mice and those whose guts were stripped of microbes. Those without bacteria showed higher levels of risk-taking and the stress hormone cortisol. They also had altered levels of the brain chemical BDNF, which has been linked to anxiety and depression in humans.

Researchers believe that in the immediate postnatal period, the “gut bacteria” have an impact on not just the immune system, but the development of the neuroendocrine and metabolic systems. Presence of microbiota regulates the “set point” for hypothalamic-pituitary-adrenal axis activity.

Research into the importance of gut bacteria is “well-established,” and two other later studies have reaffirmed the McMaster study, according to its co-author Jane Foster, associate professor of neuroscience and behavioral science and part of the McMaster University & Brain-Body Institute.

“The gut bacteria talk to the brain in multiple ways through either the immune system or the enteric nervous system,” said Foster. “It’s sort of like if you imagine a mesh network and you took your intestinal tract and wrapped that like a hot dog bun outside a hot dog. There are more neurons that directly surround your GI tract than in the whole spinal cord.”

However, while using probiotics may help a “subset of patients,” she said, it’s not a “magic bullet.” Early life stresses, nutrition and building a strong immune system all play an important role in a person’s mental health, she said.

Key life transitions — adolescence and menopause, for example — are when “big changes” are going on in the gut-brain relationship and probiotics might be helpful in building stronger resilience.

“Anyone who has a mental health disorder that coincides with a GI disorder is a good candidate for probiotics,” she said.

One such candidate was Adam Johnson, who since the age of 5 has struggled with ADHD, anxiety and some mood disorders, and has been treated with a variety of medications.

“We know now he had too much stimulation and realize his brain worked differently than everyone else’s,” said his mother, Kay Lynn Johnson of Massachusetts.

“Adam is a very slow processor and deep thinker and has an incredibly divergent brain going a thousand miles an hour all the time,” she said.

For many years, he was treated by a well-respected pharmacologist and a therapist, according to Johnson. But prescription medications were not working well enough, and by the time he was 14, his family turned to integrative medicine looking for a “broader range of tools.” His urine and blood tests found a bacterial imbalance.

“I don’t want to bad mouth drugs — they have a place,” said Johnson. “But I think there’s more to learn.”

Last year, he was taken off all medications, put on a special diet and treated with probiotics. “Friends, family and his teacher were amazed,” said his mother.

Today, Adam is in honors classes, playing clarinet in the band and doing well. “It’s been a real triumph,” she said.

Another Virginia 10-year-old was treated with probiotics after being incorrectly diagnosed with PANDAS after he developed compulsive symptoms following a strep infection and a lengthy course on antibiotics.

“He had no gut flora,” said his mother, Robin, who did not want to use her last name. “He had been healthy and athletically coordinated and then developed these compulsive behavior and tics. It didn’t seem like it was in his control.”

After probiotics, “it was like night and day,” she said. “His symptoms went away and he was totally fine. If we had kept him on antibiotics, it would have eroded his system.”

But many are skeptical of these “N of 1” stories — single clinical cases without controlled studies.

“My first reaction is that, frankly, this is just too simple,” said Nancy Desmond, program officer at the National Institute of Mental Health. “And there are so many things we don’t understand. We don’t know for sure which microbial species are part of the microbiome.”

“These are interesting questions that we don’t know much about at all,” she said. “Most of the studies are very descriptive and suggest correlations, but we need to be cautious.”

Desmond said there had been several “provocative observations” at NIH’s Human Microbiome Project and in other countries. “More people are thinking about how [the gut] talks to the brain.”

She said that NIMH is encouraging studies to address the mechanisms of gut bacteria and their association with mental health functions.

“We are really trying to encourage people to develop experiments and address the fundamental question of how bacteria influence the development and function of the brain,” said Desmond.

“We are also talking about viruses and not just bacteria and the complexity of their interactions. It’s really very tantalizing for science in general and an interesting and potentially exciting frontier for studies.”

Source of study: abcnews.go.com

When the Hardest Part of Dealing With Chronic Illness Is Other People

By Kirstie Edwards,

For me, the hardest part of dealing with chronic illness has and will always be other people. Silly, right? It’s not the pain or the sleepless nights. It’s not the constant hospital trips and treatments. It’s not the sickness and sadness that the life you thought you had, you have now lost.

All of those things are heartbreaking and challenging, but fluctuate from day to day. Dealing with the general public doesn’t go away. Ever.

Even when at my very strongest mentally, I tiptoe carefully around new people or in public places. I’ve experienced firsthand on a number of occasions just how cruel and intimidating people can be, when they feel they have the right to challenge my disability. There are of course an army of kind, considerate people that way outnumber those who are hostile, but that fear doesn’t ever quite go away.

Look at me. I’m 38, a mother of four. Of athletic build. I don’t often wear makeup, do my hair or think beyond comfort when dressing. But I look normal, right? Just your average middle-aged woman.

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It’s no wonder people look baffled when I try to explain to them what’s going on inside my body; this huge battle whereby my cells fight each other and organs become compromised in the process. I look “normal.”

You can’t see my joints eating themselves.

You can’t see the muscle spasms shooting down my legs and arms.

You can’t see my kidney struggling to filter my blood.

You can’t see my heart’s third chamber cramping as it pumps life through my body.

You can’t see my brain pulsating as it struggles to cope with the swelling at the top of my spine.

You can’t see my gut attacking itself.

You can’t see my lung lining puffed up and squished against my rib cage.

You can’t see any of it, but it’s there.

Like day and night, while my smile beams, the pain and darkness are hidden, but never stop existing.

For every event I attend, there is a plethora of extra drugs and pain; normal life that’s so finely balanced becomes impossible in the days after. I will come to your wedding and party with the best of them ( who doesn’t love a good wedding) but unlike most of the guests, I won’t be able to walk without pain for days after. I’ll need help to get undressed at the end of the night and for the next few mornings. I won’t be able to do the washing or washing up for the next week. Getting in and out of the car will leave me in tears. We will eat food that the children can cook themselves.

That’s what you don’t see. That’s the bit that all but those who live with chronic illness will never see.

The payoff.

The tough bit.

I think it’s because we keep this part of our lives predominantly private and personal that people find it so hard to accept and understand the reality of living this way. It’s why when I get out of the car on a good day, walk normally into a shop or go to the beach for a walk, I feel ashamed. I feel a fraud. I feel judged.

I live my life expecting that letter telling me I’m not sick enough, that I don’t look ill enough to get the support that I do.

The bad bits, the pain, the struggles, all that stuff goes on privately.

When you are really sick, do you leave the house? When you are in pain and ill, do you plaster that all over your Facebook page? Do you update your social media with every symptom and bad thing you feel, post only pictures of you crying and hurting?

Of course you don’t. Most people don’t. They project positivity, show only the good bits, and that’s better, right?

I made a choice some time ago, to live with joy in my heart. To no longer feel ashamed and hide away. To begin to live to my fullest potential. To treasure the positive, incredible things that I do have. To push myself as far as I could and to achieve as much as possible.

I choose to fight for my life. To live.

That is, by far, the hardest battle.

This was published by The Mighty.

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