So, What's Next?

This question has been running through my head over and over again this past week or so, "What's next?" Of course none of us really know what comes next, but if I have all the ammunition in my arsenal, why does it feel like my life trigger has jammed? When I reflect on the events that are going on in my life now and in the past, it is hard to remember a time when Fibromyalgia wasn't in the equation. We become so numb to the consistency of this illness that unless we stop to think about it, FM/CFS has been sitting stagnant on our shoulders with us, watching our lives pass us by.

Obviously life will keep moving forward and for now FM will just have to be the hairy mole on my back I try so hard to hide until the time comes when we find a cure; however, over the past month or so it has been a real trial for me to motivate myself to work, play and live the way I was intended to. Albeit I have had some major family health issues effect my life but this stress was different, it effected me in a way I never expected. Even now I am not sure I can put an emotion to it, only that for the first time in a long time I felt the pieces of  my life not quite fit as they should. I could not cure the illness that struck my family, only cope with it. I was unable to concentrate on the things that give me pleasure, i.e. writing, my girls. One day would pass then the other and it was just time on the clock, lost to.....?

There probably isn't a single point I am trying to make here, but one thing I did learn, the answer to my question"What's next?" The next few moments, then more moments after that and for now, that is enough for me to take on and live to their fullest.

If You Don't Care Than Why Should I?

When my ten year old daughter said to me "If you don't care, than why should I", a string struck a cord reminding me of a vow I made all those years ago to provide and project the best character and  lifestyle I could for my children. Of course in this situation it was all about her hanging up her coat after coming indoors while in the same breathe I  shamefully draped mine over the banister. I had been been bamboozled by a ten year old and it felt as if my motherly mouth was slapping me in the face. She was right, why should she care if I don't.

I got me to thinking about how the quirky correction to my parenting, applied to the rest of my life and since Fibromyalgia and Chronic Fatigue Syndrome (MF/CFS) take up so much of my time, this would be a good place to start. We all have our daily routines, some days are good, some are bad and the rest are plain sh!t! Either way, we talk about this invisible illness and I just like you feel the frustration of FM/CFS not being recognized by the medical community as well as friends and family.

My question is, what have you done as a strong survivor of this painful illness to make change? Change is tough and we all deal with it differently, such as medication, vitamins, support groups etc. but what about the many other things in your life you could change to help improve your symptoms and include your family in the process? If we grow accustomed to being stagnant in this chronic path then you are undoubtedly feeling stuck, but there is a way out.

My theory, is that if you start to think outside of the box, such as looking up good recipes with my daughters (I have to cook anyway right?) that help FM and maybe try the Yoga on our Wii then maybe my family will not only come closer together but begin to care just as much as I do about fighting Fibromyalgia. I feel this plan would work just the same with family and friends. When they hear us griping about how much we hurt it is hard for them to relate, but if they see us making a difference no matter how small that may be their understanding of what we go through will be that much clearer. So when your co-workers ask about how yummy your left-over dinner, now microwaved lunch smells, you can say "It's great right, really helps with the aching joints from my fibro, would you like the recipe?"

All of this does not mean that ranting and raging on or offline, even to a very understanding friend is omitted or that there won't be days where the only thing you can muster to move is the pointer finger to adjust the buttons on the remote control. But on the good days, be sure to make your best effort to care in your cure and I guarantee everyone around you will care just as much.

What Does "FINE" really mean to someone with Fibromyalgia?

When someone asks how we are doing, we say "FINE", which in Fibromyalgia talk means: Frustrated, Irritated, Non-Functional & Everything hurts! I have discussed in the past how all of us have become such amazing actors/actresses when it comes to putting on our strong faces and accepting whatever emotion is reciprocated.

I feel pretty confident that we are all well aware of this situation so today I want to talk about what happens when a new trauma, stress or overwhelming event enters your life. "What do I do now", you ask? I barely have enough energy to take care of myself let alone taking on new responsibilities and unavoidable burdens.

Recently a close family member had a stroke and during the testing process also found out that he has testicular caner. Talk about a lot to take in, for him and me. Neither of us have a real "core" support system, family has all passed away with the exception of my mother who still lives on the West Coast so the reach for help is short.
My whole life was turned upside down in one second. I had to find a way to monitor my own health, mentally and physically but also find treatment and secure care for this new illness struct patient. Being listed as the person to make medical decisions on his behalf was a though pill to swallow for me, all that responsibility.

My life even now, 3 weeks after the major event I am far from the regular routine I was so accustomed to; however, it has given me the change to challenge myself in ways I think we all sort of push aside knowing what may happen to our bodies if we do. Weather it is going to beach with friends/family or riding your bike, taking a walk. We fall so easily into the caregiver position to take care of ourselves that we forget to open ourselves up to strangers or family members who may also need assistance. I admit that I can't do this full time, I have never hurt as much, been as tired and emotionally stretched thin than I have been these past few weeks, but I will continue to find ways to give back to others in my community who need help. I can do it when I feel good and for a short time in return I get the gift of my FM/CFS being off my mind and off of the hardest job I'll ever have, fighting fibromyalgia.

With some additional medication to help get through this temporary but exhausting event, I am confident that I will be back to my sassy, over zealous personality soon. Don't be afraid to ask for help if you find yourself in this sort of situation, talk to your Dr. and know your limits! Dishes can wait until morning, beds don't have to be made you are only going to get back into them. Take things one step at a time and find your way back to "FINE" will be the best gift you can give yourself.

Fibromyalgia and Alternative Treatments

[1]From acupuncture to chiropractic, from massage to meditation, alternative treatments are in great demand. That's especially true for people with pain-related illnesses such as fibromyalgia. Alternative medicine, including herbal therapy and homeopathy, it is used in place of conventional medicine. These systems are based on the belief that the body has the power to heal itself with multiple techniques including those that involve the mind, body and spirit. Complementary medicine is used together with conventional medicine.

For people with fibromyalgia, some alternative treatments work well. That's because holistic therapies influence your total being. In that way, they may allow you to reduce your medications and increase your normal activities.

Study findings show that standard acupuncture may be effective in treating some people with fibromyalgia. Both biofeedback and electroacupuncture have also been used for relief of fibromyalgia symptoms. However, before you try alternative treatments, talk with your doctor. Check to see what limitations might apply to you. Working with your doctor, you can find an acceptable way to blend conventional medicine with alternative treatments or natural remedies. When you do, you may be able to increase restful sleep and reduce your fibromyalgia pain.

Can Acupuncture Treat Fibromyalgia?

With acupuncture, a practitioner inserts one or more dry needles into the skin and underlying tissues at specific points. Gently twisting or otherwise manipulating the needles causes a measurable release of endorphins into the bloodstream. Endorphins are the body's natural opioids. In addition, according to acupuncture practitioners, energy blocks are removed. Removing them is said to restore the flow of energy along the meridians, which are specific energy channels.

Studies show that acupuncture may alter brain chemistry. It appears to do this by changing the release of neurotransmitters. These neurotransmitters stimulate or inhibit nerve impulses in the brain that relay information about external stimuli and sensations such as pain. In this way, the patient's pain tolerance is increased. One acupuncture treatment in some patients may last weeks to help alleviate chronic pain.

What Is Electro-acupuncture?

Electroacupuncture is another way of stimulating the acupuncture points. It uses a needle hooked up to small wires connected to very slight electrical currents. Heat -- moxibustion -- and massage -- acupressure -- can also be used during this electroacupuncture process.

Laser acupuncture is yet another offshoot of this alternative therapy. It may occasionally be effective for the treatment of carpal tunnel syndrome. While it uses the same points, there are no needles involved.

There are precautions to take if you want to try acupuncture. First, make sure you find a licensed acupuncturist who has a lot of experience. Also, make sure the acupuncturist uses only disposable needles.

There are multiple styles of acupuncture. The style used depends on where the practitioner studied. For instance, Chinese acupuncture depends on larger bore needles and the practitioner may be more aggressive with moving them. Japanese acupuncture uses thinner bore needles with a relatively gentle approach. You'll need to find the style that suits your fibromyalgia needs.

How Can Chiropractic help Fibromyalgia?

Chiropractic care is a very common alternative treatment for fibromyalgia pain. People use it to treat pain of pressure points, back pain, neck pain, shoulder pain, headaches, and pain from musculoskeletal injuries. Chiropractic may be effective for fibromyalgia because it helps improve pain levels and increase cervical and lumbar ranges of motion.

Chiropractic is based on the principle that the body is a self-healing organism. To reduce pain and increase healing, the doctor of chiropractic uses spinal adjustments. The goal is to increase the mobility between spinal vertebrae, which have become restricted, locked, or slightly out of proper position.

Chiropractors do this by using hand adjustments. With gentle pressure or stretching, multiple gentle movements of one area, or specific high-velocity thrusts, the adjustments are said to help return the bones to a more normal position or motion. This return is said to relieve pain and reduce ill health.

How Does Biofeedback Work To Help Ease Fibromyalgia?

To individualize the reduction of stress in the treatment of fibromyalgia, biofeedback is often recommended. This mind/body relaxation technique uses electronics to measure stress-related responses in the body. The idea behind biofeedback is that people can use information about their body's internal processes to learn to control those processes.

A consensus statement from the National Institutes of Health indicates there is good evidence that biofeedback might help relieve many types of chronic pain. For example, it might be useful in treating tension and migraine headaches. In one study at the University of South Alabama, 80% of children with migraines were symptom-free after receiving intensive biofeedback training. In other research, some headache patients who were able to increase hand temperature using thermal biofeedback also experienced fewer and less intense migraine headaches. 

With fibromyalgia pain, you know the "real stressor" is the pain itself. Nevertheless, other daily stressors can cause your fibromyalgia to flare. What you want to do is respond in a healthy way to the chronic stressors. If learned properly, electronic biofeedback can help you control your heart rate, blood pressure, breathing patterns, and muscle tension, potentially reducing pain.

The instruments magnify signals that you might not otherwise notice. As a result, you can use this visual or auditory response to learn how to control certain bodily functions. The ultimate goal of biofeedback is to use this skill outside the therapist's office when you are facing real stressors.

With fibromyalgia pain, you know the "real stressor" is the pain itself. Nevertheless, other daily stressors can cause your fibromyalgia to flare. What you want to do is respond in a healthy way to the chronic stressors. If learned properly, electronic biofeedback can help you control your heart rate, blood pressure, breathing patterns, and muscle tension, potentially reducing pain.

How Can Meditation Help Fibromyalgia?

With meditation, you allow your thoughts to take a break from daily analytical routines and give support to the spiritual dimension of life. When you meditate, your body switches from the pumping "fight or flight" response to a calmer, more peaceful mood. Studies show that meditation produces brain waves consistent with serenity and happiness. Meditation provides nourishment for your soul, satiates inner spiritual hunger, and helps you to develop your ability to pay attention to all areas of life without distraction.


What Should I Remember If I Want To Try An Alternative Treatment?


It's important to be openly discriminating when choosing alternative treatments. The fact that something is called "natural" does not mean it is safe. Working with your doctor, look for the alternative therapies that will best boost sleep and decrease pain. The right therapy can help get you on the healthy road again.


Everyday we struggle to find a magical combination of treatment between medication, diet, exercise and mental health in order to take this illness head on. It can sometimes be very frustrating and sometimes scary; however, by keeping an open mind and considering some of the more alternative treatments for fibromyalgia you may be able to find something that will help aide in your daily routine and provide you with more less pain days. Talk to your doctor about integrating a few of these ideas into your treatment plan and give them a try. Just like standard medicine, it takes trial and error to find a good combo but these all offer a win-win solution consider there are no adverse side-effects to your illness. Keep up your fight and please share with all of us any of your experiences with this type of treatment if you have already or once you begin for the first time. The more we know, the better we all are. Pain-free wishes and gentle hugs from Fighting Fibromyalgia.

[1]WebMd

10 Steps To A More Restful Sleep

According to the National Sleep Foundation, approximately 70 million people in the United States are affected by a sleep problem. Americans suffering from chronic sleep disorders number about 40 million not to mention the additional 20-3- million affected by intermittent sleep-related problems.

Outside of pain, the next big complaint of Fibromyalgia patients is the lack of or intermittent sleep, all of which unfortunately puts our already sensitive systems into a downward spiral of harsher pain, more fatigue, brain fog and longer recovery times. It is also important, that studies have found a relationship between the quantity and quality of one's sleep and many other health problems. For example, insufficient sleep may be linked to weight gain, hypertension, cardiovascular problems and the onset of diabetes.

Here is a list of 10 tips for sleeping restfully. Keep in mind that these are intended for "typical" adults with occasional sleep problems; however through my research and in talking with other FM sufferers these have help aide in decreasing pain and promoting more healthy sleep patterns.

1. Maintain a regular sleep schedule - Our bodies have a natural clock and a regualr sleep schedule conditions our physiology with a sleep-wake cycle. A regular waking time in the morning strengthens this cycle and can help the onset of sleep at night. It is important to keep a regular bedtime and wake-time, even on the weekends when there is the temptation to sleep-in.
2. Bedtime Do's - Establishing a regular sleep routine will condition your mind and body to switch from activity to sleep. Your routine might include listening to soothing music, reading a book, a warm glass of milk or a hot soak in the tub. Another easy trick just before retiring is to dim the lights to tell your body it is time to rest.
3. Bedtime DON'TS - Avoid eating a heavy meal before bedtime. Your should finish eating at least 2-3 hours before your regular bedtime and avoid spicy food that may cause heartburn. In addition, a common mistake, many people think alcohol is a sedative, but it actually disrupts sleep, causing nighttime awakening. Other things to avoid include caffeine (e.g. coffee, tea, soft drinks and chocolate) and cigarettes (nicotine) 
4. Your Bed is not a Desk - The only purpose for your bed should be for sleeping and sex. Do not use it as a workspace for sorting out papers or surfing the internet. Create a healthy "body" relaxing environment and not a "brain" activity space. Remove work materials, computers and televisions out of your sleep environment. This was one of the hardest things for me to change about my routine, but can honestly say out of all the things I have tried and stuck with this has shown profitable results.
5. Bedroom Harmony - Your bedroom should be pleasing, clutter-free and reflect the value you have for sleep. Your bed and pillows should be comfortable. Adjust the elements in your room such as light (dark is best), temperature and noise. If necessary, use blackout curtains, eye shades, earplugs, air purifiers, humidifiers, fans and other devices. I was a jet-setter/road warrior for years and became so accustomed to using eye shades and earplugs to block out hotel/plane noise that even now I still use them. 
6. Nurture Your Body - Visiting a holistic therapist each month will help release body tension, quiet the mind and correct and imbalances. The choices are unlimited, like acupuncture, massage, reflexology, chiropractic and more. All have shown to give promising results to Fibromyalgia sufferers. 
7. Exercise Regularly (this is the hardest of all recommendations for Fibro patients to integrate due to increased pain and chronic fatigue) - Avoid exercising late at night because it raises your body temperature and makes you more alert. If you exercise at night, complete your workout at least three hours before bedtime. The best time to exercise is late in the afternoon.
8. Diet and Supplements - Feed your body healthy nutritional food with plenty of fresh green vegetables and fresh fruit. In addition, you can take a high quality supplement vitamin each day as well. This could be crucial for those of us who also suffer from Irritable Bowel Syndrome. Knowing what flairs your body can keep you from eating temperamental foods near bedtime.
9. Resolve Mental and Emotional Issues - Leave your work at work. If there are still things on your mind then make a to-do-list for you to reference in the morning. Avoid having arguments unresolved. If you have an issue with something that was said, or are angry then write your feelings in a journal and do a brain download. Do NOT re-read this journal. If you still have issues in the morning, then speak to that person or speak to a professional.
10. Don't Watch The Clock - If you can NOT fall asleep, it is best NOT to lie in bed and try to "force" yourself to sleep. Avoid checking the clock repeatedly. According to experts, if you do not fall back asleep within 15-20 minutes, you should get out of bed and go to another room. Try something relaxing such as listening to music or reading. 

We all know that getting a good night sleep every night is important to recharge our bodies and mind. The quality and quantity of sleep is crucial for health , safety and longevity. Try to integrate as many of these into your routine that you are comfortable with and be resilient. Just because one does not work on the first try it does not mean it won't help over time. You have to re-train your mind and body to make the correct changes and if there is one thing I know about Fibro patients is that we are not quitters, so fight your insomnia the right way and hopefully win in the end with pleasant dreams and better nights.

Men And Their Struggle To Find A Place In The Fight

As you know we treat everyday as a chance to create awareness for Fibromyalgia and Chronic Fatigue Syndrome (FM/CFS) but with the National Awareness day approaching us this Thursday the 12th of May, I wanted to shed some light and focus on the men who also struggle with FM/CFS.  Though most commonly fibromyalgia does seem to strike out at women, nearly 10%  of those diagnosed are men and are struggling to find their place not only in the treatment arena but in the support and awareness groups as well.

I recently read this great article that not only gave the perfect example of a man's journey from diagnosis to acceptance to becoming a major advocate for the illness, here is his story:

[1]Randy Wold, 58, was an auto mechanic, an excellent golfer, and a bowler who never scored below 200. Then, nearly 10 years ago, when he was suffering from intense chronic pain, he received a surprise diagnosis. His doctor told him he had fibromyalgia.

A disorder that causes chronic pain and fatigue, fibromyalgia strikes mostly women. Of the estimated 5 million adults with fibromyalgia in the U.S., as few as 10% are men. For that reason, the popular perception of it as a women's disease has persisted, even among fellow patients.

"When I first went to a support group meeting, it was all women," says Wold, who is now on the board of the National Fibromyalgia Association - and the only male board member with the disease. "Some didn't want me there."

A neurologist who Wold consulted wouldn't see him, discounting his diagnosis and accusing him of angling to get disability payments.

"It's a tough deal for a man to have fibromyalgia," says Wold, who is no longer able to work and can only occasionally hit the links or the lanes. "One of my best friends doesn't believe I have it," he says. "His wife, who is a doctor, told him men can't get it, that it is in my head. That kind of hurt."

I can't speak for everyone, but Randy's story not only inspired me but reaffirmed my belief that we must self advocate in our medical treatment and continue to keep an open mind about where this chronic illness may lead us. It also brought the scary thought that if it is so hard for women to get a formal diagnosis and now know it is even harder for men,it raises the question of how many more men just give up? Knowing how easy it is to become frustrated and detoured by medical professionals in general, then add the stigma of "men should be tough" to the mix, I can only imagine the fear of never knowing what is really wrong with you, second guessing your mental health and living with the idea that there is nothing that can be done. Is this my life? If you have asked yourself this question, the answer is no. Reach out to support groups, keep searching for a physician who specializes in fibromyalgia and take pro-active action holistically until you are able to get the treatment you need. 

Help is available, don't be afraid to ask for it. This Thursday is National Fibromyalgia Awareness Day, for men and women alike. Take a moment to speak up, spread the word, sign a petition, join a support group and most of all give yourself a supportive hug for making each day count in the fight against fibromyalgia. 

I would love to invite all of you to join a secure web-site created by Fighting Fibromyalgia for anyone who suffers from an invisible illness. Here is the link, I hope to see you there. Fighting Fibromyalgia web-site/support group.

{1}WebMD

When I Watched A Woman Weep

The day had been like any other, nothing out of the ordinary in fact the weather was warmer than usual for this time of year, people out and about enjoying the spring day. My pain and fatigue wouldn't be a good enough excuse to not at least walk the short distance to the park and sit in the sun, even if just to get some extra vitamin D.

Following my usual routine starting with the long hot shower to ease the muscle pain, putting my comfy clothes on, packing a small bag with water and the common emergency pain pill tucked away for safe keeping I was finally ready to sit down and take a short rest before leaving the house. I could hear it, that voice in my head saying, "Well you made a steady effort, just turn on the heating pad and call it a day". Where does that come from? After spending the entire winter wishing for warm weather, sun on my face and the visions of less pain were thrown right out my will power window. Of course my long history with Fibromyalgia taught me that it's the reminisce of long winter days and the depression those months tend to bring. Depression is a quirky thing, the longer I get to know it the more I realize it can be either a motivator or a desolater, sometimes both.

Ditching my depression demon with keys in hand I headed out the door and down the path that leads me smack in the middle of a nice little park only a few blocks away. I don't know about you, but on occasion I like to people watch. Imagine what conversations the couple holding hands are having or what the children are giggling over on the jungle gym. Maybe it's the writer in me, but there is a certain charm in inventing these imaginative scripts as if there were my own. I remember when it was me, the one walking hand in hand, playing soccer with my children and looking out into the day without a worry in the world. Now, shuffling through the brain fog that vision is, at any moment my body will just collapse from within saying, "enough is enough, pain is here and possibly to stay". Planning ahead has become a necessity and knowing if I choose to be physically active on one day, I will pay the price for it days after. Not that this has stopped me from doing the things that I love, I just can't do them as often or with as much gusto.

So, the afternoon warmed my face, as did the bench beneath my bum and though my heart wanted to stay and absorb as much of this beautiful day as I could, my body was already telling me to start heading home. I proactively took my pill knowing my muscles would settle into their common pain position within the hour and gathered my things. It was very satisfying, the walk, the park. But I also found myself somber, having to cut things short, thinking of the things I was once able to do and my willingness to give anything to have it all back.

There is a smile on my face most days, but not far beneath the surface these are the things that fester behind the fibromyalgia facade. The amazing ability to hide the doubt, questions, frustrations, pain, anxiety, depression and wonder of what each day will bring. After making it home I headed to the changing room to freshen up and then as I looked up into the mirror to splash my face it occurred to me, that I was a woman  weeping. I just stood there patiently waiting for each tear to take their turn, releasing what I can only explain as an overwhelming need to expel my worries. It was just me, back from a perfect afternoon of sitting in the unexpected sun when I watched myself weep for the first time. Mind you I have cried on many occasion, but had never really observed its reflection. To watch the way my cheeks flush pink from the rush of emotion, the tears trickling over the plump of my cheeks only to fall to the floor. It was in a way, liberating. Not the word you would expect, even I am surprised by it but that is what I felt. I was ok with the woman weeping in the mirror that day. I was worn, flushed, weak and yet still held my character as everything I feared most in this world came spilling out.

I was the weeping woman. Now, I am the woman not afraid to weep.

Off Topic And In Honor Of Mothers Day

There is an unspoken translation between mother and child. The smile that brings light, the kiss of comfort, the touch of security. She watched you grow, experience life, create your own path and follow your passions. She never stopped cradling you; first from the crib to her arms then from her arms to her heart where she'll cradle you for a lifetime. I'v watched in awe as my mother touches the lives of everyone she meets, but none more than I. A teacher by profession and in life, her actions speak volumes; creating a ripple effect as if a pebble skimming water, it's mesmerizing ripples outstretched. Even now, just as a child taking her hand in mine, life becomes simple and safe. Today I thank you, for this gift of life and the unconditional love and support towards the paths I have chosen. You are my best friend, my sister, my confidant, my strength, my biggest fan, honest critic and my creator. You are my history, my future and am proud to say, my mother. 
For all of the amazing, strong mothers and women out there, today belongs to you. 

Dr. Oz Analyzes Different Treatments For Fibromyalgia

This article just thrilled me, out of all the topics to choose from Dr. Oz, known most for his appearances on Oprah and now hosting his own show chose fibromyalgia as his first article for "O" magazine. I love it, a great step in awareness through an amazing platform! The following is his evaluation of fibromyalgia, where the medical community stands as well as what treatments he suggests.

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{1}Defining Fibromyalgia: Though classified as a disorder of the musculoskeletal system, the condition is now seen as a central nervous system problem. Symptoms include increased sensitivity to pain, achy and stiff joints, fatigue, and specific tender points on the back, chest, arms, and legs. Migraines, sleep disorders, and irritable bowel syndrome are also common complaints. Up to 3 percent of the population may suffer from fibromyalgia, but with no clear cause, the condition is difficult to diagnose.

Western Medicine Approach: A formal diagnosis for fibromyalgia didn't exist until 1990, but now there are three FDA-approved meds to combat the pain. Still, says Nancy Klimas, MD, director of the Allergy and Immunology Clinic at the University of Miami, "there is much more to treatment than a pill." Strategies are needed to improve sleep, stretch and restore symmetry to muscles that have been shortened by spasm, and raise overall conditioning through exercise.

Energy-Based Approach: Practitioners believe the root of fibromyalgia is a disturbance in nerves that blocks energy. The disturbance, says Devi S. Nambudripad, MD, PhD, and a licensed acupuncturist, is caused by sensitivities to substances ranging from pollen to vaccines to chemical agents in fabrics. Anxiety and depression may also play a part. Practitioners use acupuncture to release energy and allergy testing to identify problem substances.

Psychological Approach: "The pain of fibromyalgia is not caused by depression," says Leonard Jason, PhD, professor of psychology at DePaul University, "but depression can deepen a patient's experience of pain." Mental health professionals may play a complementary role in treatment, but it's a vital one. Cognitive behavioral therapy can relieve depression and help patients identify sources of stress that magnify their symptoms.

Nutrition-Based Approach: Fibromyalgia is a systemwide breakdown, says Jacob Teitelbaum, MD, medical director of the nationwide Fibromyalgia & Fatigue Centers. After suffering from the disease in the 1970s, he developed his own protocol; in studies, patients improved by as much as 91 percent. He recommends supplements to help sufferers sleep, balance hormones, boost immunity, and improve nutrition. He also prescribes regular exercise. (Try Dr. Oz's 20-minute workout plan)

My Recommendation: Because Western medicine was slow to accept fibromyalgia, it is behind in its work; this is an area where patients will want to take a serious look at alternative approaches. Energy-based medicine could offer some important advances in treatment over the next decade, but since it has yet to be tested by independent research, I think it's premature to base your therapy solely on this approach. I'm more impressed by Teitelbaum's supplement regimen, and not only because he has tested his theories: I've put patients on this program with very good results. I would add counseling, as it should always be a part of fibromyalgia treatment. If after a couple of months you don't see improvement, talk to your doctor about drug therapy.

{1} O' Magazine 

5 Common Mistakes Fibromyalgia Patients Make

Dealing with the constant, daily pain and fatigue of fibromyalgia(FM) can be a tough task. But the task can be even tougher if you fall into some common traps. We all make mistakes, but there are some missteps that can make it even harder to cope with FM.  Here are some suggestions on how to avoid them and make managing your Fibro lifestyle that much easier.

Not tracking your pain
[1]"The problem with fibromyalgia is that patients are always in pain so it's hard to judge when things get better and when they don't get better," says Bruce Baethge, MD, a rheumatologist with Texas A&M Health Science Center College of Medicine.
As I have mentioned before, my daily pain diary was and is my salvation when it comes to tracking my health. Keeping a pain diary can help you keep track of the ebbs and flows of your FM, this way when things are better, you can also figure out what made them better and what to do next time.

Expecting too much from medication
There are three drugs the U.S. Food and Drug Administration has approved for fibromyalgia: Lyrica, Cymablta and Sevella. These drugs may or may not work for you, or only be partially effective. They can also be expensive and have side effects, including some psychiatric problems.
The tip here is to be flexible about your options and be willing to switch if necessary. "Treatment for fibromyalgia is not just one medicine. It's a lifestyle," says Dr. Baethge.

Refusing to consider off-label drugs
Personally I think this is one of the biggest mistakes people make, when many off-label drugs are those that are approved for use with one condition but frequently given to people with another condition. For example, FM patients are often treated with antidepressants, even though not all are specifically approved for this condition; however, many people get dramatic relief with both older and newer generations of antidepressants. Take the stigma out of these forms of treatment, otherwise you are cutting yourself short in more ways than you could imagine.

Sticking with the wrong doctor
Whether you are still on your path or have already been diagnosed, you learn quickly that there are physicians out there who still think that fibromyalgia patients are making up the symptoms. Ultimately this kind of doctor isn't going to explore all the options for your care. Don't be afraid to switch if you think you may be seeing one of these non-believers. Seek out a specialist, such as a rheumatologist who focuses on FM or try the Co-Cure Project which has a list of patient-recommended doctors by state.

Not moving because it hurts too much
I am the first to admit that I fall into this trap, on more than one occasion I am afraid to admit. But the number one thing that has shown the best results for managing FM pain in exercise. Whether it's swimming, walking or Yoga it is crucial to find a way to get out there and move. I have not only been there myself but can understand the feeling of not wanting to exercise because when you first try it, we hurt even more.
I am constantly working on finding a balance for my own treatment plan, but through my journey of meeting other patients, there are those who have had such success they have been able to forgo medication altogether and get by on exercise alone to help with pain.

As we keep saying, fibromyalgia is a lifestyle and just like life itself there are going to be ups, downs and windy roads so we have to learn to be flexible with ourselves and our diagnosis. Just remember to not take life too seriously all the time, seek out support and give yourself a break. After all, we are only human.


[1] MSN Health

Fibromyalgia: Life Sentence Or New Lease on Life?

I suppose this question could be answered by weather you are a glass half empty or half full sort of person; however, either way when it comes to managing Fibromyalgia and Chronic Fatigue Syndrome (FM/CFS) the "life sentence" could be the easy choice. I've never been a fan of this saying, I am more the "Live it up, or drink it down!", kind of person but am the first to admit that even now after all these years of managing my symptoms, there are days where it feels like I have been dealt the dead mans hand and my only option is to fold.

My rough attempt at using poker for play here, my reference to "fold" does not relate to any personal suicidal tendencies, but through all my chatting in different support groups for people with FM/CFS this is a real and sensitive issue. The depression involved in your fight may have highs and lows or you may not have any real anxiety at all making your full time focus to managing your pain. The reason I bring up depression and the slippery slope it can take, is because I feel that it is overlooked not only once diagnosed but also during the journey to discovering answers.

No matter who you are, it is a natural response to have increased stress and anxiety in regards to your health which leads to different levels of depression. For me, my treatment plan has to consist of some sort of mental health treatment, whether it be a counselor or medication. In fact I started seeing a therapist long before I was formally diagnosed just to deal with the how this illness was effecting my work, family and lifestyle in ways that I could have never imagined. Any support group is a plus in my book, but I am also a firm advocate in seeking professional mental heath experts to help you reach your physical and mental health goals. If you haven't met with someone as of yet, I would highly recommend it - you've got nothing to lose.

Fibromyalgia is a life sentence and until there is a cure we will continue to learn, fight and move forward. Now, after saying that I will also say that Fibromyalgia is or can also be a new lease on life. I know more about my body than ever before, faced physical pain on a daily basis proving that I am much stronger than I will ever give myself credit for and I have met amazing patients, Dr.'s, fighters, supporters that have changed my life forever. All of these would have never happened if it were not for my continuing survival of FM/CFS.

Half full or half empty? That is up to you, just make sure you live it up in the meantime and be honest with yourself, your health needs both mental and physical and never be afraid to ask for help.

Tai Chi Reported to Ease Fibromyalgia

The ancient Chinese practice of tai chi may be effective as a therapy for fibromyalgia, according to a study published on Thursday in TheNew England Journal of Medicine.

A clinical trial at Tufts Medical Center found that after 12 weeks of tai chi, patients with fibromyalgia, a chronic pain condition, did significantly better in measurements of pain, fatigue, physical functioning, sleeplessness and depression than a comparable group given stretching exercises and wellness education. Tai chi patients were also more likely to sustain improvement three months later.

“It’s an impressive finding,” said Dr. Daniel Solomon, chief of clinical research in rheumatology at Brigham and Women’s Hospital in Boston, who was not involved in the research. “This was a well-done study. It was kind of amazing that the effects seem to carry over.”

Although the study was small, 66 patients, several experts considered it compelling because fibromyalgia is a complex and often-confusing condition, affecting five million Americans, mostly women, according to the Centers for Disease Control and Prevention. Since its symptoms can be wide-ranging and can mimic other disorders, and its diagnosis depends largely on patients’ descriptions, not blood tests or biopsies, its cause and treatment have been the subject of debate.

“We thought it was notable that The New England Journal accepted this paper, that they would take fibromyalgia on as an issue, and also because tai chi is an alternative therapy that some people raise eyebrows about,” said Dr. Robert Shmerling, clinical chief of rheumatology at Beth Israel Deaconess Medical Center in Boston, co-author of an editorial about the study.

“Fibromyalgia is so common, and we have such a difficult time treating it effectively. It’s defined by what the patient tells you,” he added. “It’s hard for some patients’ families and their doctors to get their head around what it is and whether it’s real. So, that these results were so positive for something that’s very safe is an impressive accomplishment.”

Recent studies have suggested that tai chi, with its slow exercises, breathing and meditation, could benefit patients with other chronic conditions, including arthritis. But not all of these reports have been conclusive, and tai chi is hard to study because there are many styles and approaches.

The fibromyalgia study involved the yang style of tai chi, taught by a Boston tai chi master, Ramel Rones. Dr. Solomon and other experts cautioned that bigger studies with other masters and approaches were necessary.

Still, patients, who received twice-weekly tai chi classes and a DVD to practice with 20 minutes daily, showed weekly improvement on an established measurement, the Fibromyalgia Impact Questionnaire, improving more than the stretching-and-education group in physicians’ assessments, sleep, walking and mental health. One-third stopped using medication, compared with one-sixth in the stretching group.

Dr. Chenchen Wang, a Tufts rheumatologist who led the study, said she attributed the results to the fact that “fibromyalgia is a very complex problem” and “tai chi has multiple components — physical, psychological, social and spiritual.”

The therapy impressed Mary Petersen, 59, a retired phone company employee from Lynn, Mass., who said that before participating in the 2008 study, “I couldn’t walk half a mile,” and it “hurt me so much just to put my hands over my head.” Sleeping was difficult, and she was overweight. “There was no joy to life,” she said. “I was an entire mess from head to foot.”

She had tried and rejected medication, physical therapy, swimming and other approaches. “I was used to being treated in a condescending manner because they couldn’t diagnose me: ‘She’s menopausal, she’s crazy.’ ”

Before the study, “I didn’t know tai chi from a sneeze,” said Ms. Petersen, who hasdiabetes and other conditions. “I was like, ‘Well, O.K., I’ll get to meet some people, it will get me out of the house.’ I didn’t believe any of it. I thought this is so minimal, it’s stupid.”

After a few weeks, she said she began to feel better, and after 12 weeks “the pain had diminished 90 percent.” She has continued tai chi, lost 50 pounds and can walk three to seven miles a day.

“You could not have convinced me that I would ever have done this or continued with this,” she said. “I wouldn’t say it’s a cure. I will say it’s an effective method of controlling pain.”

Dr. Shmerling said that though tai chi is inexpensive compared with other treatments, some patients would reject such an alternative therapy. And Dr. Gloria Yeh, a Beth Israel Deaconess internist and co-author of the editorial, said others “will say, ‘It’s too slow, I can’t do that.’ ”

But she said it offered a “gentler option” for patients deterred by other physical activities. “The mind-body connections set it apart from other exercises,” she said, adding that doctors are seeking “anything we can offer that will make patients say ‘I can really do this.’ ”

A version of this article appeared in print on August 19, 2010, on page A16 of the New York edition.

By PAM BELLUCK

Published: August 18, 2010

How To Explain Fibromyalgia to Other People

One of the most common questions I receive is, "What is the best way to describe fibromyalgia(FM) pain to people who have never had it?" When many people try to describe their condition to family members and friends, they tend to receive looks of confusion suggesting everything you just said went right over their head. First of all, everyone with FM has had to face this tough and uncomfortable conversation and unfortunately some still receive looks and comments of disbelief. Regardless of the remaining skepticism in the medical community and social arena, this doesn't make the pain and discomfort of FM for you any less real.

[1] In general, your explanation to others about fibromyalgia should be straightforward and uncomplicated. You might say something like, "Fibromyalgia is a rheumatic disorder that causes muscle tenderness, pain and fatigue." If the other person doesn't understand, you might make your explanation simpler, such as "Firbomyalgia is like arthritis in the muscles." Of course, this explanation is not entirely accurate, but it should be readily understood. You might also obtain some literature on fibromyalgia, such as the Arthritis Foundations's guide Good Living with Fibromyalgia, to share with family and friends who would like more information.

In addition, you might help others understand FM better by explaining in clear language how it affects your. Be careful to avoid complaining, but be honest and open about the symptoms and how they affect your daily function. You might even want to practice what to say here, it can be so easy to fall into a conversation about how bad you feel all the time without realizing it, leaving the people you are trying to educate with the all too common "doubt brow" and sour taste in their mouths. If friends or family offer, you can then tell them how they may be able to help you (or not help you). In the end, honesty is the best approach.

[1] Kristofer Hagglund, PhD

Fighting Firbomyalgia - Inspired by fibromyalgia, created for all the voices of "Invisible" illness.

Fighting Firbomyalgia - Inspired by fibromyalgia, created for all the voices of "Invisible" illness.

Fibromyalgia And It's Effects On Your Significant Other

I would imagine outside of keeping tabs on your own personal sanity, being concerned about the way your illness has effected your significant other would be at the top of your list. With everyday being so unpredictable with the symptoms of Fibromyalgia and Chronic Fatigue Syndrome (FM/CFS), making plans and setting priorities with your partner can easily become a fixture on the back burner. As unintentional as this is, we tend to avoid our concern by accepting guilt as a part of our daily routine instead of facing the reality that our partners share the same burden we do in fact that we are a less active partner than you once were.

I can't say there is an easy answer for relieving guilt for either party, but I do know that if you are not open with each other about our feelings that guilt turns to resentment and this is where bads things start to brew. For the same reason we forgive ourselves for being not so pleasant because of a major pain day, we need to extend that forgiveness and allow our lovers to have moments of anger, frustration and plain insanity. When you hurt, they hurt, when you can't leave the house either they choose not to go out or they do and feel guilty the entire time. When you cry, they cry with you and when you fight they fight along side you. This is what a significant other is, an equal partner in love, life and health. It is crucial that we communicate to them that these emotions are all something that not only you have felt at one time or another, but would expect them to feel as well. Say to them, "It is ok to be angry about how this illness has effected our lives", doing so will help prevent those same feelings migrating from their original target, your illness, to you.

The more open you are with your partner about your emotional state the more apt they will be to discuss theirs in return. Having an open dialog will keep the door open to topics such as your sexual activities and possible experimentation to what goals as a couple you have to help in your healing process. All of these things will not only give you a sense of amazing support but also allow your significant to feel apart of the solution and not an addition to the problem.

Survey Gives Patients with "Invisible" Illnesses a Chance to Speak Out About How They Are Treated

Patients who suffer with chronic fatigue, figromyalgia, pelvic pain, TMJ, migraines, chemical sensitivities, and more can speak out in an anonymous survey about how the medical community treats them.

FOR IMMEDIATE RELEASE

PRLog (Press Release) – Oct 02, 2010 – Patients with "invisible" illnesses, such as chronic fatigue, fibromyalgia, vulvodynia, interstitial cystitis, migraine, irritable bowel syndrome, chronic pelvic pain, and a host of other pain and inflammatory disorders have tremendous difficulty finding the help and treatment they need; even finding a diagnosis is a challenge. Doctors often dismiss their symptoms as being imaginary, which further demoralizes an already suffering patient. 

Now, as part of the research for a new book on how the medical community treats patients with "invisible" illnesses, patients  can express their feelings and speak out through an anonymous patient survey. All respondents will receive a downloadable pain trigger journal.

According to Susan Bilheimer, author and survey creator, "It's time that the medical community recognized that patients with illnesses that are chronic and not easily diagnosed are not problem patients, but patients with a problem. Just because you can't see pain and inflammation doesn't mean they aren't real. There are certainly exceptional doctors who understand chronic illness. But for those who don't, I'm hoping to send a wake-up call that it's no longer acceptable to dismiss and mistreat suffering patients."

So far, over 1,100 responses have been received. A number of organizations, such as the National Vulvodynia Association (www.nva.org) and the Interstitial Cystitis Association (www.ichelp.org), have encouraged their members to take part.

To take the survey, go to http://www.surveymonkey.com/s/TDWVHDW

This survey is associated with the Invisible Illness Advocate (www.InvisibleIllnessAdvocate.com) and Secret Suffering (www.SecretSuffering.com) websites (Susan Bilheimer, founder, and Robert J. Echenberg, MD, medical advisor).

Fibromyalgia Should Be Your Reason Not Your Excuse!

I think for most people with Fibromyalgia and Chronic Fatigue Syndrome (FM/CFS) our first frustration is the diminished ability to be as physically involved in our lives as we once were, such as now a day at the park with family can set you back a week. The second thing is we start to miss the feeling of contribution to society. If you are still working, I am sure you have noticed it takes more of a toll on you emotionally and physically to do what used to be so simple. If you have become unable to work due to FM/CFS then this feeling will be much more prominent. We all want to feel needed and when the brain fog clears we can do a lot to contribute to family, non-profits or socialize with friends.

There are many of us who have become homebound, live alone or have excluded themselves from being apart of something due to the fear of how your symptoms will interfere, which then leads to the part where you have to explain why you can't do the job or get it done on time. Healthy or sick, nobody wants to be in this situation. The good new is, we know what our bodies are capable of doing. I know I can't run in a Fundraising 10k but I may be able to sit at the registration booth for a few hours. I know I can't manage an entire project with a specific timeline without backup and the people I work with knowing why there will be days where I just can't participate. I also know I can't plan my girlfriends entire baby shower but I can help make up some goody bags over a period weeks.

Why is all of this so important? In all of our humanity the one thing that sticks out the most is the desire to be apart of something larger than ourselves, to make our mark on the world and most of all feel useful. This deep seeded need seems to slowly slip away in some, after years of excluding and isolating themselves. It has to stop! Fibromyalgia must become your reason to seek out ways to become apart of your community, your family, your friends. It must become your reason to be honest with yourself and what your abilities are, then make it your reason to be honest and involved with those around you.

I have been able to find ways to be involved with non-profits, activist groups online and in my community and after introducing myself, I flat out say, "I would love to be apart of your charity, these are the things I am good at, then I simply state I have FM/CFS and that it should be taken into consideration when assigning me a project."  Trust me, as straight forward as this may sound not once have I ever been turned away and the best part about it is that I took the elephant out of the room before I even got my foot in the door. I used Fibromyalgia as a reason to become active.

As far as I am concerned, we are all fighters and there is NO EXCUSE to not find a REASON to get involved. Keeping or getting back the pride we feel when we're apart of something bigger is possible,  just be brave enough to take the first step.

If you have questions, topic ideas or would like to get in touch with me, please feel free to email me.

Fibromyalgia Treatment: Ribose - Trick Tincture Or True Tactic?

Your first question will probably be, "What is D-Ribose?" D-Ribose is one of those supplements that have garnered a lot of attention recently. D-Ribose is a 50-carbon sugar (unlike 6-carbon glucose sugar) directly involved in the production of "ATP," the fuel that every cell in the body uses for its energy production. D-Ribose doesn't raise blood sugar; rather it's directly converted to ATP. It can even lower blood sugar a bit.


Supporters of D-Ribose claim it decreases pain, improves mental clarity, increases energy, improves stamina, creates an improved sense of well-being, and strengthens heart performance. Uses for D-Ribose range from folks with chronic fatigue syndrome or fibromyalgia to athletes looking to improve their exercise endurance. It may also be helpful, in theory, to those who experience muscle aches and pains as a side effect of cholesterol-lowering sustaining drugs. 


According to Dr. Mitchell Hecht, who specializes in internal medicine states that while there are many anecdotal claims about D-Ribose benefits, there isn't much in the way of double-blinded placebo-controlled research out there that tests it against a dummy pill or powder. He has not recommended it to his patients; however, says it is safe enough to recommend to select patients who have not responded to other treatments for chronic fatigue syndrome, fibromyalgia pain, or cholesterol-medicine weakness and pain. The recommended dosage is 5 grams (powder dissolved in liquid) two to three times daily with meals. Two reputable brands he notes are Corvalen and Life Extension D-Ribose. 


I know we are bombarded with tincture medicine and medical reviews that suggest products to magically make all our symptoms go away. We of course know better than that, but it doesn't stop up from wanting something, anything to at least help put us on the right track. I personally have never taken Ribose, but will be looking a little more into it, especially since I am the worst example of healthy eating. I try, truly I do but with kids and energy levels I can't guarantee that a few nights a week we are having whatever the fridge has to offer. So, due to my current eating lifestyle I need something that will help balance or at least tip the scales a little in my favor. The more information I get and once I have had a chance to take this stuff myself I will be sure to update you all. 


If you have any additional questions, comments, topic suggestions or just in need of support, please email me. 


As mentioned Dr. Mitchell Hecht specializes in internal medicine. Send questions to him at" "Ask Dr. H., Box 767787, Atlanta, Ga. 30076. 


[1]Sourse - Philly.com

Fibromyalgia Myth Busting

For many years fibromyalgia has been considered something of a mystery, confounding the doctors who are trying to treat it and the patients who have to live with it. Only recently has new technology begun to unravel the truths about this mysterious disorder. As a result of this previous lack of scientific evidence, several myths about fibromyalgia have developed that, unfortunately, are still being repeated today. It's time to dispel the myths and clarify the facts.

1.  Myth:  Fibromyalgia is a form of arthritis.

Fact:  Fibromyalgia is a neurological disease.

Although it was once thought that fibromyalgia might be a form of arthritis, research over the past 10+ years has proven that to be false.  Arthritis is defined as an inflammation of the joints, but there is no inflammation with FM, nor is there any damage to the joints.  A fibromyalgia patient may have a type of arthritis (like osteoarthritis or rheumatoid arthritis) in addition to FM, but it is a completely separate disorder.  On the fibromyalgia research front,new brain-imaging techniques and scientific studies are revealing that fibromyalgia is better defined as a central nervous system disorder that results in abnormal pain processing.

2.  Myth:  Fibromyalgia affects the muscles, joints and connective tissue.

Fact:  There is no damage to the muscles, joints or connective tissue of people with fibromyalgia.

For many years fibromyalgia was described as a musculoskeletal disorder because much of the pain people experience with fibromyalgia feels like it is coming from the muscles, joints and connective tissues.  However, years of testing failed to reveal any actual damage to the musculoskeletal system.  What research has discovered is that a malfunction in the central nervous system of FM patients causes disordered sensory processing which leads to pain amplification.   In other words, a stimulus that would not even be noticed by most people can be extremely painful to someone with fibromyalgia.

3.  Myth:  Fibromyalgia is an autoimmune diseases.

Fact:  Fibromyalgia is NOT an autoimmune disease.

Autoimmune disease is the result of a body’s overactive immune response.  In a sense, the body’s immune system begins to attack its own cells and tissues.  There is no evidence that fibromyalgia is an autoimmune disease.  In fact, years of research have not turned up any virus, bacteria or immune disorder.  It’s not unusual, however, for someone with FM to also have one or more autoimmune diseases, such as: celiac disease,Crohn’s disease, lupus, multiple sclerosis, rheumatoid arthritis, Sjögren's syndrome, or some types of thyroid disease.  Other illnesses that are suspected to have an autoimmune link and may occur with fibromyalgia include: chronic fatigue syndrome, endometriosis, interstitial cystitis, and Lyme disease. 

4.  Myth:  Fibromyalgia is a middle-aged woman’s disease

Fact:  Fibromyalgia affects men, women and children. 

To date, a larger percentage of adult women have been diagnosed with fibromyalgia than men or children, however, it does affect all ages and both sexes.  In fact, it may turn out that more men and children have FM than previously thought.  Doctors are finding that men may have fewer than the traditional 11 tender points, yet still meet all the other criteria for fibromyalgia.  Thus, there may be considerably more men with FM than previously thought.  And what was once thought to be “growing pains” in children may actually turn out to be a form of fibromyalgia.  But because most pediatricians are not very familiar with FM, they are unlikely to diagnose it.  Although fibromyalgia will likely continue to be diagnosed more often in women, we may eventually discover it affects significantly more men and children than once thought.

5.  Myth:  Fibromyalgia is a psychological problem.

Fact:  Fibromyalgia is a physical disorder with real, measurable biological abnormalities.

This myth probably causes the most frustration to fibromyalgia patients.  After years of being told “It’s all in your head,” patients finally have proof that fibromyalgia is a very real, physical illness.  Research studies have revealed a number of biological abnormalities, including:

·        Decreased blood flow to specific areas of the brain, particularly the thalamus region, which may help explain the pain sensitivity and cognitive functioning problems experienced by fibromyalgia patients.

·        High levels of “substance P,” a central nervous system neurotransmitter involved in pain processing.

·        Low levels of nerve growth factor.

·        Low levels of somatomedin C, a hormone that promotes bone and muscle growth.

·        Low levels of several neurochemicals: serotonin, norepinephrine, dopamine and cortisol.

·        Low levels of phosphocreatine and adenosine, muscle-cell chemicals

        Despite the scientific evidence, some medical professionals continue to dismiss fibromyalgia as a psychological problem, insisting that the symptoms are caused by depression.  The fact is that the percentage of FM patients who suffer from depression is no higher than for any other chronic illness.  Unfortunately, since it takes an average of 17 years for new research to become part of mainstream medicine, we’re probably going to be fighting this myth for several more years. 

 Reprinted with permission of ProHealth, Inc. from “FM Research and Treatment News,” 5/30/07.[1]Source(healthcarecentral)