I've lost track of all the specialists I've seen since I was first diagnosed in 2003. I've seen several rheumatologists, pain specialists, neurologists, cardiologist, the list goes on and on. They have all done one thing in common ....... contradicted each other.
I can not begin to describe my frustration. Supposedly, at present, rheumatologists are the "go to" specialists for Fibromyalgia and Connective Tissue Diseases (Lupus, Rheumatoid Arthritis, etc). Yet, it seems that these specailists are at a loss. Some still feel that it's an imagined disease. Others feel that strong narcotics and muscle relaxers are the only key since it's impossible to improve quality of life. Some feel that narcotics and muscle relaxers should not be used, but rather the pain should be dealt with and used as a sign of what you should and should not do. Some believe that there are a myriad of symptoms that falls under these diseases and that they often overlap in symptoms. Others believe that there is a strict criteria of symptoms for each disease and that symptoms don't overlap.
I have been told that my symptoms are caused by Fibromyalgia and Mixed Connective Tissue Disease. I've been told that I don't have either, and that there is something else causing the symptoms (though that doc wasn't sure what it was causing it). I've been told that I should work through the pain and that I should stop when I feel pain. I've been told that my symptoms aren't caused by either Fibro or MCTD and that I should go see a particular specialists, only to have that specialist tell me it is the Fibro and MCTD. I could go on and on.
Now, I'm just tired and frustrated. It appears that, although diagnosed with Fibromyalgia, MCTD, and Reynaud's Phenomena.....the only one that can be successfully treated is the latter. I've been told that I'm a difficult patient and won't have any relief because I refused to the prescriptions of Oxycontin offered me. This was after I made sure the physician had duly noted my previous drug addictions as a teen. I've been told that narcotics offer no real relief to the pain and worsen the fatigue.
I've had medications that successfully help manage my pain without affecting me mentally suddenly no longer be covered by insurance. I've had medications that would help not be covered by insurance because the FDA had not explicitly approved it for my specific use. I've been unable to get certain medical care that has been proven to help because it's considered "alternative". I've been denied medical coverage o quoted rates that were so astronomical that I'd never be able to afford it. I've had to wait over 6 months on a waiting list to get in to see a doctor.
I've had to argue with some doctors to prescribe me certain medications that I've used before because they didn't think it would work. I've had to argue with doctors that if I'm only asking for 30 Hydrocodone's every 3 months, there is no way I'm abusing them! I've been told that if I refused the pain clinic's prescriptions (the oxycontins) then there was no point in being given prescriptions for medications not as strong.
Why am I harping on this now? Well, I recently had a doctor's appointment. It was my second visit with this particular doctor and I'd hoped that this would be a doctor that valued the whole body approach (do these doctors exist anymore). Tired of having several different specialists who all contradict each other, I want one doctor who can assist me in finding a combination of both medicinal and non-medicinal ways to improve my quality of life. Yet this specialists literally.......yes literally.....shrugged her shoulders and told me she didn't know what to tell me. She then named out some other specialists I might could see, telling me that she knew some of my symptoms could not be caused by MCTD or Fibromyalgia. This after years of being told by other doctors that the symptoms were a direct result of these diseases.
I've heard very good things about a handful of doctors in relation to MCTD and Fibro. Yet, none of them accept insurance, none of them are nearby, and they all want astronomical fees.
I can't help but wonder...............what exactly is going on with the medical field these days? How can several different physicians tell me opposite things and declare them to be truths? How can medications shown to help people not be covered by insurance but medications with a lower success rate be covered? Why is it that specialists won't work together as a team, but rather feel there is some sort of competition between them?
I long for a time when your physician knew you by name. The time when they knew your family and asked specifically about them when you came in. The time when your doctor could discuss with you all your symptoms, and various solutions as to how to treat them. A time when your doctor actually researched any symptoms they weren't familiar with and found out information about what might help.
I'm fortunate that my children got to experience this type of care when they were first born. Their pediatricians and doctors have all either retired or moved to another practice. I've been searching for a doctor that can offer me that type of care, and am continually discouraged not to find it.
I'm not alone in this. Many people find that they receive more information about what will help them from support groups and message boards then from specialists and physicians. More and more people are turning to online pharmacies or even moving to states where medicinal marijuana is legal. Many people have quit seeing physicians completely and turned their back on the medical field that seems to only make things worse.
Although I feel that the health reform has a lot of good suggestions, I feel that there needs to be a focus on quality healthcare and not just quantity. I have health insurance but prior to the Clinton Administration was one who would never have qualified due to pre-existing conditions. Even now, if not for the year I spent with state funded health care, I wouldn't have the paid health insurance I have now through my husband's employer. But, if I didn't have health insurance, would I want to pay for the medical treatment that I receive now? I'm not saying that focus shouldn't be put on helping those without insurance to obtain it..............but if everyone is going to be forced to obtain insurance, then shouldn't the medical care at least be of a greater standard?
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