Great advice, Dr. Bob... and welcome to the forum! Excellent points about rules that the patient needs to follow as well. It will be so much easier when a cause and solid diagnosis are possible. That would totally cut out the seekers claiming fibro to get drugs... and patients who are actually suffering wouldn't have such a hard time.
Question... why do so many doctors still believe it doesn't even exist? Have you seen any CME concerning fibro? My physician friends haven't. I think it's time to get some further education to the medical community about this. Having done the med school years and internships back before it was known really isn't much of an excuse not to come up to speed on it.
Since you're suffering yourself, have you done any publications on it? I think that would be very helpful to a *lot* of colleagues.
FYI, there is always new information about Fibro. Journal articles come out and classes are offered. If a doctor has the time, they would need to scan thru thousands of CME opportunities and chose whatever they are most interested in. The information in the Medical field is coming out faster than we can keep up with.
Many practices have been placed on hold to learn about conforming their practices to all of the new laws being mandated. A patient doesn't realize that it takes time and money for a practice to become paperless as we are ordered to do. We must learn computers and new coding every year or we don't get paid. There are the confusing issues with ObamaCare. We are not superhuman and we are bombarded with issued that don't seem to make it better for a patient to receive care. The "Doctor" has become a pawn in keeping statistics on patients, figuring out the billing procedures and has lost the old time doctor-patient relationship that you all are missing. Basically, we have become a drone,,,a provider of health care, a statistician of the conversion into a Socialized Medical reality with large patient deductibles and longer waiting times. The world is changing and the worse is yet to come. This is what our President is causing and Insurance companies are have their own problems. It will not return to the way it was,,, my health care is over $30,000/year for the family and had gone up after we got dropped and re-instated. Bigger problems are coming your previously pleasant Physician might become short tempered as he struggles to pay his staff and conform to the new laws. You will be noticing a difference as they don't seem to have any time to talk with you. Some Docs are retiring earlier that anticipated just because of these changes of computerization, coding, and record keeping.
Your doctor wants to spend time with you but can not afford to run his business unless he limits the time with you. Once you finished, your visits is not over! The paperwork,,and the computer entries , and the interaction with insurance companies are killing us. Only a 'fee for service' practice will afford the time you desire,,or a true Socialized Medical System will be difficult to accept,,,financial incentives might allow your doctor to spend more time with you. Money drives the system and the current administration has created change within the health care system. I am afraid that our medical care will become worse as the doctors are losing incentives to improve their knowledge with so many requirements placed on them to run their business. Its a sad thought,, it is coming true. It is getting harder and harder to be a patient.
Back to Fibro: Lots of Doctors don't even believe that Fibro exists,,,the same complaints are heard in Depression, Sleep Disorders and Psychological Pain disorders. The indication to treat pain is very specific and they are covering there behinds,,, need proof before prescribing pain relief. This is too sad for words. Far too many people are suffering or are under treated .
I have had success with a very low dose opioid and I can functionI have been on Lyrica, Cymbalta, other SSRI's and anything that the FDA approves for this condition. Non narcotic pain relievers do not help me. Well, its not an inflammatory disorder!. A course of steroids was tried and ultimately,,, the only things that help in a pill form are Xanex to relax and help me sleep , and the low dose opioids. Light exercise helps,,,,keeping your weight down helps,,avoiding drama and stress helps, keeping busy helps, a good sleep is rare and that is most helpful. You must all do your own research and take control of your disease.
Someone suggested that I write a paper. That would be a good idea but there are many written that are current. Maybe the only way that your MD would believe you would be if he had it himself? I can't tell my MD all of my symptoms because he would think I was a nut case,, ha, ha, like the rest of you! I can't tell my wife everything because I feel bad for her and only share what is relevant. She doesn't need to know about the ants crawling across my back or another headache again. However,,,I invite you all to share your feelings and others will know that they are not alone. I believe you because I have it too,,,you believe me as well. For example,,,So strange to explain what we mean by 'overwhelming fatigue'. They don't get it! "Why not just rest and you will feel better" Sure, what a great idea! How can they understand what we feel? How could you still be tired after sleeping 12 hours? I get it!I understand these issues also.
I am so saddened by this illness but,,and get this! I am not afraid of it any more! They are just symptoms of misinterpretation of pain signals and not related to true pain. Benign pain and benign fatigue will not get worse or take your breath away. We will survive by changing our activities and doing all the things that we can still do,,,and learn other things to do that we never had considered previously..We still have our lives to live(with or without understanding people) Maybe ,,,a friendship lost was never really a friendship/ Count your blessings if you have an understanding family. Don't complain constantly to the spouse because they already know. You need them as your best friend and don't want them to burn out! Complain to me instead!
We all have good days and bad days, like the weather, like your activity the day before. Why should I exercise if 24 hrs later I can't get out of bed? Maybe the Princess and the Pee was a true story?
God bless you all and stay with it. Avoid the snake oil and learn good nutrition, walking or swimming in a warm pool, eat foods with the appropriate nutrition, nobody needs more that a multivitamin and that's probably a waste, good hydration, avoid smoking , too much caffeine, and alcohol, and practice your best sleeping habits. My wife and I sleep apart for my sake. You must not sit around in a chair all day. Keep your brain working. Be careful about withdrawing too much. Have only those close friends who understand and won't suck your life from you. Avoid watching the bad news on TV more than is necessary. Family support and understanding. Breath and slow down,,,remember that life is a journey and not a race. There is a lot of research being done and I believe that there will be a medication that will control the symptoms but not cure the disease,,I believe we are close,,,stay calm,,,Fibro will not kill you and you will have good days ahead of you. Good luck.
Dr Bob
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Thanks for all that info, it's great to have someone who actually knows what the protocol of a doctor is. I really value the info you have given us 
