Let's Go Shopping!
Trying to manage Fibromyalgia without a doctor that is compassionate, on your side and willing to work with you is impossible. Simply impossible. I have seen more than my fair share of medical professionals that were doubters, unkind and knew far less about CFS and Fibromyalgia than I did. I would ask them, challenge their knowledge, and find they had no clue. I would set out to each appointment with a glimmer of hope, a bit of optimism that someone could help me, only to leave in tears, sobbing my way home crestfallen and despondent. Yet the information is out there... Let's be honest here, folks, Fibromyalgia is hot! The number of patients are on the rise, as many as 6 million in the USA alone! It is on the cusp of gaining major recognition as Pfizer advertises the life out of Lyrica. We now have 3 FDA approved drugs to manage symptoms, and while they may not work for everyone, at least it is no longer considered "all in your head" by certain sectors of the medical community. Yet many doctors remain clueless. They will whip out that prescription pad and stick you on whatever non-narcotic drug you can tolerate, whatever drug the rep has left the most samples to distribute, whatever Big Pharma has told them will work, side-effects beware. They will force you to battle them for narcotic pain meds, treating you like a junkie, with no true grasp of how much torture you are really in. They will tell you to eat less and exercise more, with no concept as to how bad you hurt and screwed up your hormones are, what a victim you are to the side-effects of the drugs you are already on. See they don't truly understand the illness and all the multitude of symptoms that go with it. It is not just a pain syndrome! I see the The American College of Rheumatology is proposing a new set of diagnostic criteria for Fibromyalgia that includes common symptoms such as fatigue, sleep disturbances, and cognitive problems, as well as pain. As awareness campaigns are springing up left and right we are gaining the confidence to talk about it, no longer ashamed the doctor could not come up with something more "real" to diagnose us with. So there is no excuse for the way we are still treated and dismissed by certain archaic medical professionals.
It is their loss, actually. As the numbers of Fibromyalgia patients increase they are missing out on a fabulous money making opportunity by staying clueless about it, sticking their heads in the sand of the dark ages of that horrible "blame the patient" mentality most of us have had to endure. I say we take some pride in ourselves and our diagnosis and stop supporting these doctors that treat us so poorly! It is critical to have the right combination of meds to manage this illness, keep the pain at bay, insure sleep at night. And this is NOT the same for everyone. Part of the problem with Fibromyalgia is that it is such an individual illness, custom to each patient. So as an important step of The Fibromyalgia Crusade, my awareness campaign that I am launching soon, lets go shopping! Let's change the doctor experience entirely. Let's take control of this crucial aspect of our management and take pride in ourselves and the true reality of what we are dealing with. Lets stop moaning and complaining and expecting the same unsympathetic doctor to suddenly care and set the tune of the doctor visit so it is under your control. I know this is extremely difficult when you are in so much pain, fog-brained and exhausted, but this is quite possibly the most important step to getting Fibromyalgia under control, so put everything you have into it! If you are without insurance or on Medicade you will have to fight all that much harder for yourself.
It should go something like this:
1. Seek out referrals, research, educate yourself. Know the latest treatments and drugs. Here are some links that may help:
2. DRESS FOR SUCCESS! No, don't wear a business suite but DO NOT walk into that appointment a disheveled mess. Wear some attractive clothing, brush your hair and pinch your cheeks. Put a little lip gloss on. Appear like a sane, rational and normal person that is ill. Yes, the "you don't look sick" aspect is frustrating but you must be taken seriously and not dismissed as a mental case. This is much easier to convey if the doctor is looking at a patient that appears to "have it together".
3. Bring all your previous test results. Blood tests, imaging, etc. Your current and previous doctors should give those to you no problem. But DO NOT transfer your entire medical records from an "unsuccessful" doctor to a new one, just bring in any previous test results.
4. Start an accurate and easy to glance at daily symptom chart to bring to your appointment. Simply list all your symptoms and assign them a number (1-10) for each day. Keep it simple, neat and easy to read. It is hard with the Fibro-fog to come across as a sane, coherent individual so documentation is necessary. Bring a list of your current medications and ones you have tried in the past. Bring everything you possibly can so if you find yourself in the Fibro-fog of your life you can still have a successful appointment. The more organized and pro-active you appear the more seriously you will be taken.
5. Clearly state your symptoms and hardship without a desperate or emotional charge. Explain what you are doing that is working and what your greatest obstacles are. Challenge the doctor to work with you so that your Fibromyalgia is managed and does not rule your life. If after all this you have a bad rapport or feel degraded or condemned, gracefully exit the appointment and never go back. Then start over again with a new doctor.
Look at it like this... if the red dress does not look that great, go back out to the dress department and try on that green one, and if that one is just ho-hum go try on the blue one, keep trying until you find the one that makes you look amazing! That same attitude needs to be applied to your doctor. Take the emotion and desperation out of the anticipation of each doctor appointment and go in with a curious open mind. Wait to see if they impress you. Lower expectations lead to no disappointment! And trust me, you will eventually find a doctor you click with. Hopefully one that will get your pain under control and help you sleep so you can start the process of rebuilding your life. Take responsibility for your health and stop lining the pockets of these apathetic doctors with your hard-fought money! It is absolutely time we were taken seriously, but until we demand it, it will never happen. Medical science will figure out the mess we are in one day... Until that day comes we are the suffrage movement, the civil rights movement, a revolution...The Fibromyalgia Crusade!
Thanks for joining,
Leah
It is their loss, actually. As the numbers of Fibromyalgia patients increase they are missing out on a fabulous money making opportunity by staying clueless about it, sticking their heads in the sand of the dark ages of that horrible "blame the patient" mentality most of us have had to endure. I say we take some pride in ourselves and our diagnosis and stop supporting these doctors that treat us so poorly! It is critical to have the right combination of meds to manage this illness, keep the pain at bay, insure sleep at night. And this is NOT the same for everyone. Part of the problem with Fibromyalgia is that it is such an individual illness, custom to each patient. So as an important step of The Fibromyalgia Crusade, my awareness campaign that I am launching soon, lets go shopping! Let's change the doctor experience entirely. Let's take control of this crucial aspect of our management and take pride in ourselves and the true reality of what we are dealing with. Lets stop moaning and complaining and expecting the same unsympathetic doctor to suddenly care and set the tune of the doctor visit so it is under your control. I know this is extremely difficult when you are in so much pain, fog-brained and exhausted, but this is quite possibly the most important step to getting Fibromyalgia under control, so put everything you have into it! If you are without insurance or on Medicade you will have to fight all that much harder for yourself.
It should go something like this:
1. Seek out referrals, research, educate yourself. Know the latest treatments and drugs. Here are some links that may help:
- "Find a Doctor" from About.com:health
- The American College of Rheumatology website
- American Medical Association's DoctorFinder website
- Co-Cure ME/CFS and Fibromyalgia "Good Doctor" List
2. DRESS FOR SUCCESS! No, don't wear a business suite but DO NOT walk into that appointment a disheveled mess. Wear some attractive clothing, brush your hair and pinch your cheeks. Put a little lip gloss on. Appear like a sane, rational and normal person that is ill. Yes, the "you don't look sick" aspect is frustrating but you must be taken seriously and not dismissed as a mental case. This is much easier to convey if the doctor is looking at a patient that appears to "have it together".
3. Bring all your previous test results. Blood tests, imaging, etc. Your current and previous doctors should give those to you no problem. But DO NOT transfer your entire medical records from an "unsuccessful" doctor to a new one, just bring in any previous test results.
4. Start an accurate and easy to glance at daily symptom chart to bring to your appointment. Simply list all your symptoms and assign them a number (1-10) for each day. Keep it simple, neat and easy to read. It is hard with the Fibro-fog to come across as a sane, coherent individual so documentation is necessary. Bring a list of your current medications and ones you have tried in the past. Bring everything you possibly can so if you find yourself in the Fibro-fog of your life you can still have a successful appointment. The more organized and pro-active you appear the more seriously you will be taken.
5. Clearly state your symptoms and hardship without a desperate or emotional charge. Explain what you are doing that is working and what your greatest obstacles are. Challenge the doctor to work with you so that your Fibromyalgia is managed and does not rule your life. If after all this you have a bad rapport or feel degraded or condemned, gracefully exit the appointment and never go back. Then start over again with a new doctor.
Look at it like this... if the red dress does not look that great, go back out to the dress department and try on that green one, and if that one is just ho-hum go try on the blue one, keep trying until you find the one that makes you look amazing! That same attitude needs to be applied to your doctor. Take the emotion and desperation out of the anticipation of each doctor appointment and go in with a curious open mind. Wait to see if they impress you. Lower expectations lead to no disappointment! And trust me, you will eventually find a doctor you click with. Hopefully one that will get your pain under control and help you sleep so you can start the process of rebuilding your life. Take responsibility for your health and stop lining the pockets of these apathetic doctors with your hard-fought money! It is absolutely time we were taken seriously, but until we demand it, it will never happen. Medical science will figure out the mess we are in one day... Until that day comes we are the suffrage movement, the civil rights movement, a revolution...The Fibromyalgia Crusade!
Thanks for joining,
Leah
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