The more you read about fibromyalgia and interact with those who have it, the more you discover that no two cases are alike. There is a list of symptoms that put us in the box of fibro and/or cfs, but everyone seems to have their own unique experience. Degree of pain, type of pain, location of pain, is all different. Emotional, psychological, and neurological concerns, gastrointestinal symptoms, fatigue levels, sleep disturbances, are all varying degrees of different. Some people have all the listed symptoms and more, some have just a few, some are bed-ridden, some just have life interrupted.
The medical community has made it very clear that they know little more than we do. Because of this, I am a firm believer that as a patient, it is my responsibility to be my own health advocate. I do a lot of reading and research on the internet. I specifically hunt for answers to my unique individual set of symptoms. I know that there is no one specific treatment for fibromyalgia, but symptoms can be treated individually and that is how I choose to approach it. My main goal with this post is to raise awareness among fibromyalgia patients about the lack of concern for personal well-being by most doctors. Most doctors will throw the latest, most trendy fibro drug at you and send you on your way. They don’t know what else to do. But I am not here to complain about doctors, I know there are many good ones. I am here to show you how we can own more control over our health!
Let me just take a moment and give you some of my thoughts. Identify your worst symptoms – the ones that you want to improve and treat – and then read about them. Read a lot. Go to trusted sources on the internet. Dig through web pages, blogs, forums, health sites, etc.. Ask advice from other fibro patients on social networking pages. Look up what the general population is doing to treat that symptom. Find out what studies have been done and what the latest research is saying. Research some natural alternatives and evaluate if that might be something you want to try. Keep reading. Stay educated.
Use the web – it is a powerful, modern resource. Learn to use it, navigate it, and empower yourself to choose better health. There is no cure, there is no magic pill, there is no one remedy that will work for everyone. What works for me and what I share here may very well not work for you, but it is all about continuing the search until you find something that DOES work for you. It is exhausting and overwhelming. It’s not fun, but it’s worth it. Don’t expect your doctor – no matter how good or bad he or she is – to know your everyday ins and outs of this syndrome. Everyone is different. Take the reigns. Fight for wellness. Know what blood tests you should have. I recently discovered some vitamin deficiencies by asking my doctor to run certain blood tests. Will correcting these deficiencies make a difference in how I feel? I don’t know yet, but I am sure gonna try. Pursue the path to the best you that you can be in spite of the diagnosis. Research until you have a plan that seemingly fits you. If your plan doesn’t work, DON’T GIVE UP, move on to the next thing on your list and make a new plan.
For example, if you struggle with anxiety (as I do), then research anxiety. What do other fibro patients do to help with anxiety? What are other people outside of fibromyalgia doing? What are some natural remedies I can try? What lifestyle choices are people making that make a difference? If I want to try a prescription medication, which ones are available? What are the side effects? What do others have to say about this med? Is that med a fit for me?
Know all of this BEFORE going to see your doctor . Doctors are not counselors. You must find a doctor who will listen to you (more about that in the next tip post) and actually care about what you are saying, but they don’t have two hours to hear out every single, personal woe. (And couldn’t we all talk for days about our ailments?) That’s just not realistic. Hit the highlights. Keep it brief, kind, and to the point. Don’t be arrogant, you didn’t go to med school, 🙂 but state your case. Plan out what you are going to talk about during your visit. Suggest to your doctor what symptoms you think need to be addressed and a suggested plan of action. Then, ask your doctor a lot of leading questions. What about this? and that? should I try this? what do you suggest? I read this, what do you think? I know that seems backward, but often we go to the doctor and end up taking home scripts and know very little about them and don’t know if we really need them or if that is the best course of treatment for us. Don’t blindly follow your doctor’s lead without being informed. Ask a lot of questions. Educate yourself. Knowledge is power. List possibilities of the way you would like symptoms to be treated and then listen to your doctor’s guidance and MERGE the two together to come up with a personalized plan of action to attack your worst symptoms. Be smart and don’t give up!!!
We shouldn’t have to be a our own health advocate, but I am convinced that we MUST. I know it takes a lot of planning and energy that we don’t have. But make it a priority. Perhaps, you could enlist a supportive family member or friend to help you sort it all out. If you are blessed enough to have a doctor who is knowledgeable about fibromyalgia and takes the time to personalize your treatment, then count your blessings! But I have found that the best treatment comes from personal research merged with a doctor who is willing to listen and guide. There is no cure, but there is hope for better days. Stay positive and keep pursuing wellness!
Check out my links page for some great resources to start taking control of your health. And check back for next week’s Tuesday Tip – How to Choose a Doctor.