More so than many other health concerns, fibromyalgia is a condition where patients often have to be strong “self advocates” when it comes to finding the appropriate help. Although most providers today are finally starting to diagnose "fibro", unfortunately there are still some that are not “up to speed” and even more that may be dismissive of the symptoms patients are experiencing. If that is the case, patients need to either seek care elsewhere or be more assertive with their doctor.
Things are changing quickly in healthcare and with the “baby boomers” now enjoying the benefits of computers and the information era in full swing, medical knowledge, self help and self advocacy is now the norm. I know that there are still many doctors out there that enjoy "that paternalistic role" and really dislike being questioned at all, but it is they that must be the ones to change. Knowledge can only be a good thing, and patients that research and learn about their conditions often can help bring about a much more successful healing.
I often use an expression when talking with my patients: “knowledge is power”. When a person does not fully understand what is going on, there is often some fear. Fear is stressful and stress can either delay or stop any healing from taking place. This is a known physiological fact and that is why I become concerned when I hear of patients not having a full understanding of their conditions. It is also one of the main reasons why I spend a great deal of my time in the office explaining and teaching my patients exactly what is going on when they have any kind of pain. It may be a patient with fibromyalgia or it may be a patient with a sprained lumbar spine. In either case, the need to fully understand what is going on is very important.
It is truly amazing how the human mind works. The brain controls the body, and thoughts have an enormous effect on brain chemistry. A very simple example of this is how quickly adrenaline is released when someone is frightened. In fibro as in many other health issues, chemistry plays a key role in what direction the condition will take. This is the main reason why I am concerned about the communication that takes place between patients and their health care providers. When a doctor is “dismissive” of a patient’s symptoms, it is understandable that they are sure to feel an enormous amount of frustration. On the other hand, a doctor who paints a picture of “gloom and doom” or scares a patient into unnecessary testing is certainly going to cause fear and make matters worse.
I am going to make a statement that I am fairly confident is accurate; most of you who read this site are already pretty educated when it comes to fibromyalgia. Some of you have researched this condition for quite some time and know most of the latest studies. You are to be commended, and you are surely on your way to finding the proper way to manage your condition. Now, how do you bring a physician on board with you? All patients sometimes need to be reminded that they are the ones that are hiring the doctor not the other way around. You need open dialog with your doctor where questions and answers are shared. You also need enough time given for this to occur. It may be a good idea when making your initial appointment to state that you have or think you may have fibromyalgia. You should then ask if the doctor sees patients with fibromyalgia and if so, will there be a sufficient amount of time during the initial visit to discuss your concerns. When a patient with fibro schedules an appointment in our office they are told that they will be with the doctor for 60 to 90 minutes.
Remember “knowledge is power” and you are the “captain of your own ship”. For some of you that may be an overwhelming feeling, however, the more control you have over this condition, the more empowered you will become.
Dr Mark Guariglia graduated from New York Chiropractic College in 1977 and treats patients at his office in Point Pleasant, NJ 08723. He has recently started the group IFAC (International Fibromyalgia Awareness Campaign), which can be found on facebook, and we here at Lumigrate 'Like it' so hope you will as well, and help them grow by joining and telling others. Mark shares that he has a history of fibromyalgia personally and has been focusing on it's treatment increasingly for a major portion of his career. His website is: http://www.FibroCareCenter.com [1]
Links:
[1] http://www.FibroCareCenter.com
[2] http://www.lumigrate.com/forum/being-your-own-advocate-particularly-critical-fibro#comment-723
[3] http://twitter.com/lumigrate
[4] http://www.lumigrate.com/forum/being-your-own-advocate-particularly-critical-fibro#top
[5] http://www.lumigrate.com/user/login?destination=node/560%23comment-form
[6] http://www.lumigrate.com/user/register?destination=node/560%23comment-form
[7] http://www.lumigrate.com/forum/being-your-own-advocate-particularly-critical-fibro#comment-862
[8] http://www.facebook.com/pages/Fibromyalgia-Support-Groups-by-Aimee/94975642116
Comments
Dr Mark -- I really appreciate your registering at Lumigrate and writing! As you like have seen, what you're discussing here is what is on the home page of Lumigrate, and basically the 'hub' of our model of doing the business of the occuapation of health education. Remember, I'm an OT/occupational therapist, so I'm always reminding providers and patient/consumers that how you occupy your time is 'occupation', making money is 'vocation' and occupations include showering and shaving shopping, as well as how to be a medical consumer. That's pretty unique of an OT to strike out to bring such a robust mechanism as a full blown website to the Internet in order to accomplish this task, but I felt it was necessary and I had access to some amazing providers here in my 'back yard of western Colorado' to get things started off with. It's been wonderfully inspiring and rewarding to see the net of valid, progressive providers coming to Lumigrate stretch across the country! All the way to the NorthEastern corner of the US with you, I believe....
I'd like to clarify that sometimes the users of Lumigrate.com have been fortunate enough to stumble upon us when they're not all that knowledgeable about fibromyalgia. I've been astounded at the number of people who were spending a lot of time on the computer learning but had never heard of Jacob Teitelbaum, MD, for instance! To me, it's interesting that they're finding Lumigrate and me and haven't heard of him! (NOT that I'm compaining). You'll see that I have information about Dr T and links to his website, as he does have a wealth of information that fits my paradigm for education about health, fibromyalgia and fatigue. If there's a good wheel out there, I want to find it and route people to it in a streamlined way and if someone sees something on here that interests them, then link out to delve deeper in that pod of information.
Due to the overwhelming amount available on the Internet and the simplicity of throwing information onto facebook if you're wanting to 'help people', I've found people have sometimes become mired sometimes in less that the best information, unfortunately. Lumigrate DOES want to capture those people and rapidly get them up to speed, but you're RIGHT, we do cater to the more educated, "sophisticated" medical consumer who is interested in 'integrative medicine' and being proactive with their health.
We offer solutions and suggestions for those that might be caught in a negative place (see the piece on 'going from shame/blame to letting it go' in the brain/mind (psychology) forum, as much for those who are questioning why it is there are SO MANY out there who are seeming initially to want to get better and have information but then they don't put that information into action. There ARE reasons for that to happen, and it requires people quite knowledgeable about the psyche to explain, and just before I got on the computer and read your new post/above, I was on the phone with Chris Young about what I'd hope he could provide easily to Lumigrate (he's super busy), and had an email exchange today with Paula King related to 'resistance', resulting in her providing NEW content about that for us here! (They are both PhD psychologists with Lumigrate.com who are some of the 'local talent').
So everyone, Lumigrate just got GRATER with Dr Mark coming along I think! Thank you so much for your interest in Lumigrate and taking the time to share with people here! I'm going to put the YOU picture up here again for your benefit... a different version than what we put on the home page. A picture's worth a thousand words. ~~ Mardy (PS -- Dr Mark: there is not 'chiropractic' on this model because they were created to be utilized within the integrative medicine center Lumigrate was part of it's first year, and they didn't have chiropractics BUT that's why we put 'who would you add' and 'your provider' on some of the 'advisor orbs'.
Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as: Twitter: http://twitter.com/lumigrate [3] and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!
REALLY an important bit to read from Dr. Mark.....
So what do you think? I think Dr. Mark has a FANTASTIC point. We must be our own advocates! And that can be hard, after all, most of us don't have the training to read the complex studies or to interpret some of the findings. But, there are places where we can get the information we need, especially someplace like Lumigrate, which brings to our computer monitors some amazing experts and their valuable insight.
One point though I want to really focus on for a minute: "When a doctor is “dismissive” of a patient’s symptoms, it is understandable that they are sure to feel an enormous amount of frustration. On the other hand, a doctor who paints a picture of “gloom and doom” or scares a patient into unnecessary testing is certainly going to cause fear and make matters worse."
THIS is why we must educate ourselves and know what our limits are. I know so many of us have had the doctor say fibro is in our heads and I know how depressed that made so many of us. We can't allow this to happen anymore. The point Dr. Mark is making: that the more we know, the better we can manage our care, the more we can assert what we want to have happen, which in turn, gives us more control over our health care. Sound like an integrative model of care?
I started educating myself on fibromyalgia and ALL the various treatments out there a long time ago. But it's just been in the past 5 years that I have had to really get firm in my knowledge and firm in my expectations. I know people who won't tell a doctor they have fibro, for fear of the doctors response. I've been there and done that, and who loses? ME! Since I've gotten comfortable in my knowledge, since I've taken charge of my health, I tell any specialist my various diagnosis'. And I haven't had a single snotty remark, a single dismissing of my concerns or a single rolling of the eyes. I have heard "it's just your fibro", but I knew better and I pushed for the help I needed. And when I have been proven right, I count it as a win and a moment of education for the doctor.
Part of advocating for ourselves is educating ourselves. Seek out the knowledge. Ask questions of the GRATE experts here on Lumigrate. Keep logs of your symptoms, food, medications, side effects so that you can see patterns as they emerge. And take charge!
Thank you Dr. Mark for some grate inspiration this afternoon!
~~Aimee
Aimee Shannon is a licensed social worker who has fibromyalgia along with a collection of other illnesses. Aimee is passionate that those dealing with chronic illnesses need education and support to best manage their illnesses. Along with writing for Lumigrate, Aimee can be found leading a support group on Facebook, as well as two in person support groups in the Dayton Ohio region. http://www.facebook.com/pages/Fibromyalgia-Support-Groups-by-Aimee/94975642116 [8]