What is fibromyalgia?
Watch this on youtube: http://www.youtube.com/watch?v=5aQkzCQElYQ
This site is dedicated to the 1 in 4 people suffering from chronic pain due to illness. The primary focus of fibrobulletin is to advocate for those with fibromyalgia and other chronic illnesses. This site will provide facts and stats and up to date information on many of the illnesses plaguing so many individuals worldwide. Also check out my fibromyalgia podcast series on youtube. Look for my first book “A survivors guide to reversing fibromyalgia” by Tate Publishing coming to book stores soon. My second book “Reversing fibromyalgia through fitness and nutrition” will be out next year.
Topics for discussion will be Fibromyalgia; Chronic Fatigue Syndrome (CFIDS); Lupus (SLE); Myofascial Pain Syndrome (MPS); Hypothyroidism: Hypothalamic Pituitary Adrenal Axis Dysfunction (HPA); Heart Disease; Periodic Leg Movement Disorder (PLMD); Multiple Chemical Sensitivities; and the psychological impact that chronic illnesses can present.
The ultimate goal is to become empowered and learn to advocate for yourself. Knowledge is power. My goal is to raise awareness about chronic illness, to encourage policy change, to speed up the diagnosis process, and to develop a collaborative effort between chronic illness sufferers, healthcare providers, researchers, government legislators, pharmaceutical companies, hospitals, and businesses.
What is fibromyalgia? Who are the experts? What is the truth about this illness? What are the myths about this illness? What resources hold accurate information? Who should I trust? This blog helps to answer these questions. If you wish to contact me about topics related to this site: email@example.com.
Living with fibromyalgia
Some of us are living with fibro symptoms that never seem to go away. We live with chronic pain, overwhelming fatigue, and a myriad of other symptoms that truly get in the way of living a normal life. Treatment today works for some of the people, some of the time. A cure is a ways off. Were just not there yet.
That is why in order for us to live a quasi-normal life, we have to learn to manage our illness. This includes the psychological aspect of chronic illness versus the western medicine aspect of treatment. I’m not suggesting that western medicine has failed us in any way, they haven’t, there are brilliant minds like Dr. Daniel Clauw and Dr. Sharon Ostalecki working around the clock, efforting the fibromyalgia epidemic; I’m simply suggesting that for some, other alternatives are equally effective.
Essentially, there is a percentage of those with fibro that will not respond to traditional drug therapies and even non-traditional therapies like massage, chiropractic, homeopathic, acupuncture, even yoga or tai chi. So what do the rest of us do when all of this fails to provide results?
The topics I would like to emphasize are acceptance, education, coping, and attitude; and I would like to add nutrition and fitness to the wellness regimen, however I won’t go into depth about those topics here. I also like to use the word wellness to describe the many number of different stages you will go through as you get beyond illness.
Acceptance is the number one most important thing I think you can do to start down the path to wellness. Regardless of what you suffer from, fibro, cancer, MS, depression, or if you have to learn to live without the use of your arms or legs; at some point you have to accept your situation. And I’m not just talking about agreeing that you have an illness, or accepting that you will have to make changes in the way you live your life in order to move on; I’m talking about accepting you situation IN FULL.
This is not an easy action to take. Who you are today has everything to do with who you will be tomorrow, but your attitude about the situation you find yourself in will mean the difference between illness and wellness.
You have to accept that you have an illness. You have to accept that the very nature of your illness will force changes in your life. You have to accept that you may have limitations. You have to accept that you will be in pain, often, and that some days will be better than others, and in the grand scheme of things it may get down right ugly at times.
While all of these shortcomings matter, they are also the catalyst for greater disability for many who suffer from an illness or injury that takes something away from you. You have to accept changes that will be required. And finally, you may have to accept a degree of loss.
Next I’d like to discuss education, or education and advocacy as I like to approach the topic. When you first begin to develop symptoms, or when you receive a diagnosis from your physician, most of you will likely go home and launch a desperate search on the Web about anything and everything that can help to explain your illness, and to provide some insight as to how to move on from there.
The problem with internet searches is that there is a lot of poorly constructed Websites out there with invalid information that may lead you astray, and lengthen the time it takes to accept your illness; and further complicate your understanding of your illness. So accurate information becomes critical. There are a number of reputable sites that exist like the CDC, NIH, or the ACR, but there are also a number of sites that focus exclusively on fibro and provide a wealth of knowledge, like H.O.P.E. www.hffcf.org
The trick here is to find as much information as possible as quickly as possible, because the pursuit of knowledge will guide you to wellness much faster. It is suggested that the average person takes 3 years to get a diagnosis for fibro. Ten years ago it took 5-7 years. That number is slowly decreasing, meaning that people are getting the right information about fibro sooner than ever before, shortening the time it takes to learn to manage your illness.
Education really is key. It is the fundamental ingredient to living a better life, and it’s no different with disease. H.O.P.E. provides a network of priceless information that is at the cusp of research. Dr. Ostalecki partners with some of the most gifted individuals in the industry like Dr. Clauw, who are paving the way for the rest of us.
Once you’ve accepted your illness in full, and you have educated and armed yourself with a toolbox full of information, you’re ready to learn to manage your illness and to use effective coping strategies. I’m not going to kid you and say that there is an easy path to wellness with fibro, for many there are not. But when you fill your toolbox with the right kind of coping strategies, you will be equipped to face the challenges when they present.
No matter how much or how long you suffer with symptoms like severe pain or debilitating fatigue, you never really get used to it. It takes a number of things to effectively deal with chronic illness some days.
When you make your way through your wellness program, as I’d like to call it, you will likely face some trial and error therapies, some that work, some that don’t. I have always kept a wellness journal and I suggest you do the same, where I document what’s happening in my life with my illness, the medications I’m taking, which ones work, what side effects I’ve experienced, my diet, my symptom cycles etc.
With this knowledge you will begin to fill your toolbox with effective coping strategies. You document what works and you build strategies from there. You network with others to find out what has worked for them. You may even want to talk with a therapist about your situation and together you will work out effective coping strategies. CBT has a proven track record of efficacy for many suffering with chronic illness, especially those comorbid conditions like depression and anxiety which seem to go hand in hand with chronic illness.
Learning to effectively cope means learning to live with and deal with your pain and other symptoms, the resulting changes in your life, the potential social effects, and keeping your family emotionally healthy as well. This is a critical step in any wellness approach.
And finally, I’d like to address attitude. It all starts with attitude. Attitude plays a huge role in just about everything you do from your job, your friendships, your sportsmanship, and of course illness. Viewing the glass half empty is a failure waiting to happen.
I think for many of us, what becomes necessary is an attitude adjustment. We may often ask ourselves, how much can one person take? Having the right attitude about your illness becomes a critical component to wellness. The ups and downs that come with chronic illness are enough to disable someone fast. It takes a strong, positive attitude to continue the fight at times. When the going gets tough, the tough adjust their attitude and take the next step forward.
I hope this site provides clear, concise information about what it takes to survive chronic illness!