Chronic Diva

Why doctor’s Know So Little About Fibromyalgia

After approximately 6,000 research studies on fibromyalgia, why is it doctor’s still know so little? For starters, many medical journals describe fibromyalgia as “mysterious” and “confusing.” Primary care physicians are uncertain how to diagnose fibromyalgia and find it equally difficult in treating it. According to Ginerva Lipton, MD, who was diagnosed with fibromyalgia during medical school, “part of the problem is that fibromyalgia has an ‘orphan status’ meaning that it is claimed by no specialty but is awkwardly straddling the fields of rheumatology, neurology and pain medicine.” This leaves an overwhelming number of fibromyalgia patients in the care of PCP’s who have no idea how to treat. Equally frustrating is the delay between what scientists are discovering about the disease and what your doctor may actually know about it. There’s even a nick name for that lag: ‘research-to-practice gap.’ [Dr. Kim Dupree Jones] It is interesting to note that along with this lag there is also lack of press time for fibromyalgia in the big medical journals. In fact, according to Ginerva Lipton, MD “Since 1987, only one fibromyalgia study has been published in the New England Journal of Medicine, and for an illness affecting 10 million people, it’s shameful.” It is morosely humorous to me that fibromyalgia is ranked in the top 20 of reasons to visit the PCP, even more than urinary tract infections, but doctors don’t know how to effectively treat it. There are also many other treatments that are ignored because they come from the realm of alternative medicine, whose journals are not read like medical journals and the information that might help is overlooked.

How To find The Right Fibromyalgia Doctor

This is me right now. I was recently diagnosed with fibromyalgia and I was excited about my doctor because she seemed very nice and knowledgeable (and this is not saying she is not, but that it wasn’t the right fit), but she immediately put me on Cymbalta, which is also an anti-depressant. I cannot take anti-depressants without a mood stabilizer because of my bipolar type. I am very sensitive and it can send me very easily into a manic episode. This being said, I can’t really fault her. She did not ask how sensitive I was and just prescribed something that I know now to be a very regularly used medication for fibromyalgia. Still, asking me about the severity of my bipolar would have been nice. In any case, I never took it and then felt awkward about going back to see her. And just a funny for any of you who struggle with bipolar and fibromyalgia, I actually wondered how it might be to be manic and fibro-exhausted at the same time. What a conundrum! Would they cancel each other out? These are the things that keep me up at night.

So I am on the hunt for another doctor and it’s not like you can look up a fibromyalgia specialist so I feel a bit nervous. But unlike some of the newly diagnosed I am armed with information and now, some knowledge of what I am looking for. When it boils down to it I want to be listened to. I know my situation is complicated and I might be difficult to treat but I don’t just want medicine thrown at me. And I certainly want some questions asked before it is tossed at me. That is the first thing I would advise you before looking for a doctor, whether you are looking for a first time diagnosis or whether you are looking for a second opinion. Here are a few other things that might help.

Which Doctor To Choose

Please know I am not an expert, however as I read and learn, I have found out the following are truly the best doctors to choose from to treat fibromyalgia. However, for some of you specialists may not be an option and so if you cannot see one of the following, it might be in your best interest to have a team of doctors that can work together to formulate of a plan of treatment for you.

Rheumatologist: They deal with fibromyalgia and can diagnose and treat you. However rheumatologists are often very busy with the amount of arthritis patients they have and may not be able to delve deeply into your case. Still, there are very good rheumatologists out there and so if you have access to one go for it!

Neurologist: current research theorizes that symptoms of fibromyalgia are closely related to a central nervous system disorder. It may be partly due to a pain processing ‘disconnect’ affecting the brain and nervous system. This can be a good option as well. However, for me I am not so certain and I am still working out if I should approach a neurologist. I have migraine and seizure disorder that is undefined and so I have been on a whole host of medications which are the go-to for a neurologist. Gabapentin (Neutontin), Lamotrigine (Lamictal) and Pregabalin (Lyrica). Gabapentin just seemed like a waste of time for me after almost 14 months taking it, which was actually not neurological related but for nerve pain associated with the SIJD. I am allergic to Lamictal which is also used as a bipolar medication and Lyrica I had no significant results.

Pain Management: This group of physicians truly has little else at their disposal that differs from rheumatologists or neurologists, except for narcotics. Now, I see a pain management doctor regularly because I have sacroiliac joint dysfunction and lumbar fusion failure. I’ve been on opioids going on 14 months or so. However, I am not being treated by my doctor for the fibromyalgia because at the time I did not know pain management could treat it and now, even though I do, I am reluctant. It is common knowledge in the pain medicine community that narcotics very likely make chronic pain, fibromyalgia worse. Let me explain. “Most pain management doctors are aware of the downside of narcotics. People can have increased pain when on narcotics because the medication changes the way their endorphin system works.” Seth Waldman, MD, director of Pain Management at New York City’s Hospital for Special Surgery. [http://www.arthritis.org/living-with-arthritis/pain-management/chronic-pain/pain-clinic.php] This information was actually corroborated by my surgeon, who explained that it is a misconception that people who struggle with chronic pain have a high pain tolerance. He said it actually lowers your threshold for pain because it changes the physiology of the brain. [Dr. B. Christoph Meyer] For me, this leaves me caught between a rock and a very painful place. I need meds for my structural pain issues, but those same meds are probably hurting me. So approaching how I will ultimately treat my fibromyalgia will be different than yours and please don’t take what I am saying as discouragement. There may be more options for you out there than me because we’re all different. Pain management for you might be that saving grace which helps you and pulls you out from despair. Most of you out there are probably not on this same slippery slope as I am, caught between so many things wrong and taking so many pills. But even if you are, what I have expressed here is only to inform you so that you might be armed with as much information as possible to make the best decisions you can.

I haven’t decided yet which particular path I will take and what doctor I might choose to see. I’m leaning toward rheumatologist, perhaps someone who is more well versed with fibromyalgia. I haven’t ruled out more than one doctor either, and as I will discuss in the next segment, I am a strong advocate for alternative medicine and would like to incorporate that with traditional medicine.