Have You Mourned Your What If's?

It sounds like a strange question or at least it was to me when asked by a dear friend. "Have you mourned your what if's?" I had to really step back and evaluate the question before I could even begin to wrap my fibro-fogged brain around it. So I started a timeline starting from the beginning of my first symptoms to my current semi-productive state. It has been eight years now since my first twinge of pain that lead to a landslide of bad health to follow and overcome including chronic pain, insomnia, depression, anxiety, Fibromyalgia and chronic fatigue syndrome. Almost sounds like a preface to a medical report that ends with no real solution, only band-aides followed by questions and foot notes. But there it was in all its ugly and frustrated truths.
Back in 2004 I was an ambitious corporate climber with the nations largest printing company, The Hearst Corporation. Not only was I climbing at a deserving but explosive rate, I had found my professional niche. I was becoming the youngest executive in a Fortune 500 company not to mention I was a woman in what still is a male dominated field. I found myself at the age of 28 holding the world in my hands without boundaries and loved every second of it, little did I know it was the beginning of the end. After months of pain, being ill and misdiagnosed I was hospitalized with a pulmonary embolism. In one full swoop not only was I knocked off my feet but my career took a massive hit and never truly recovered. I was told by the specialists that I should have never survived the severity of blood flooding my lungs and would be lucky to ever fully recover let alone leave the hospital.The collision of emotion hit me like a ton of bricks. I had two small daughters ages 3 & 4 at the time who I couldn't imagine not having their mother to raise them and the sympathies from work that would only last for so long before it effected the bottom line making me replaceable. The two most important things in my life were in jeopardy and totally out of my control but my type A personality ignored the expected and got up, brushed myself off and jumped back in as soon as I was able, or should I say pass for able.
Over the years I fought off bacterial pneumonia eight times followed by the rash of symptoms that brought me to Fibromyalgia. We all have a back story of the person we were before Fibro took hold and changed our lives forever. I finally  made the decision in 2010 that I could no longer do my job the way I was intended to and had become a sideline mom for my girls. The powerhouse executive and practicing soccer mom was a shadow that I have drug behind me ever since. So, the question "Have you mourned your what ifs?" makes perfect sense to me now. I had been holding the what ifs against myself for years, what if I hadn't gotten fibro? Where would my career of taken me? What if I hadn't been in so much pain to play with my girls the way I was intended to, did I miss some pivotal moment that will now never show itself?
I will never know the answers to any of my what if's, but what I do know it's important to recognize what those things are, accept them, mourn them and find a way to forgive yourself for something that was never in your control tp begin with. I am still a work in progress finding new avenues of creation that allow me to feel productive and positive. There will always be the days where it takes every ounce of my being to get out of bed, but I do and even if nothing is accomplished the one thing you can say, is 'I am strong and this is only one day, bring it on tomorrow!" Allowing yourself to forgive, let go of any guilt and mourn the loss of your "What If's" is the first step to reclaiming the new you. The Fibro-fighting bad ass that has no regrets and nothing but a blank canvas to create in front of you. Today is that day, today you become "what if" free!

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