The Fibro Team: You and Your Doctor

When you're diagnosed with fibromyalgia, it's often by a specialist, who then sends you back to your primary care doctor for future care. The problem with that is that many primary care doctors aren't equipped to deal with the multiple problems that can spring up around fibro, and many of them simply treat one or two symptoms, rather than trying to create a treatment plan that will enable the patient to develop a plan of attack that will give them the best chance of having the most normal life they can. Some doctors are hampered by the patient's insurance plan, which doesn't provide for the best treatment options, and other doctors- the "worst case scenario"- simply don't believe that fibro actually exists.

These nay-sayers will tell you that it's all in your head, and send you to a psychiatrist for treatment, or they will tell you that your diagnosis is wrong and send you off to another round of specialists for more tests, and subject you to more needless testing, when the answer is fibromyalgia, really.

It's worse if you are actually (like me) diagnosed with a mental illness.

I was diagnosed with Fibromyalgia in 1997. Many years later, I moved to Florida and was diagnosed with bipolar disorder. I was going to a new primary care physician for treatment, and I mentioned that my fibromyalgia was bothering me, and asked for treatment for it. He stated that some of my symptoms didn't add up, and wanted me to be tested for a couple of other illnesses. Since the symptoms were new, I agreed. The tests all came back normal, and he finally agreed to a treatment plan. I should have been alerted by his reluctance, but he was a new doctor, and I didn't have the knowledge I have now.

Fast forward a few years. My grandfather died in January, and I traveled north to Illinois for the funeral. Between the shock of his death (despite his advanced age, he'd always been in good health), the shock of the freezing weather (going from sunny Florida to below-zero temps in Illinois is never easy), and the stress of the funeral and grieving relatives, I went into a very bad flare. I came home. I suffered for two months- my Grandfather died in early January, and I dealt with the pain and sleep loss until March. Finally, near the end of March, my husband urged me to seek care. I was a wreck. I went to my doctor and asked for pain medication. I had never done this before- with any doctor. Never had I asked for the medication. I had been treated with it for one other flare, but it had been at the doctor's discretion- but this was an out of the ordinary situation, and I felt, like my husband did, that it was past time that I got the help I deserved.

The doctor told me he didn't think the pain was real.

I was stunned and appalled. Not only did I feel completely betrayed- I thought he understood my condition from his previous agreement to treat my pain- but I also felt, now, like he thought I was just some drug-seeking addict, despite the fact that I'd never asked for drugs before, ever. I couldn't think, I couldn't act. I didn't know what to do, and I was in so much pain from the flare my ordinarily clear-thoughts were fogged.

My husband went to the doctor with me, confronting him. The doctor agreed to treat me if my psychiatrist would write him a letter stating that the pain wasn't in my head. Because I was desperate, I agreed. I didn't want to begin a relationship with a new doctor asking for pain medications. We made the appointment with my psychiatrist- he wrote the letter, and my primary care doctor gave me the script I needed.

But I swore I would never go back to that doctor, once I was out of the flare.

It took another month. I used nearly all the pain medication, another thing I had never done, but by May I felt better. I sought out a new doctor, one who believed that fibro was real, and would take me seriously when I spoke with her about my pain. I told her what had happened with my old doctor, and she was embarrassed for me. She told me she disliked using opiates for fibro pain, because of their addictive properties, but that if I "had extenuating circumstances" like a death in the family, she would certainly make an exception for me.

That's all I needed to hear.

If your doctor ever makes light of your pain, fire them. Period. Fibro pain is real- I have it in writing, from a doctor who's not only an MD, he's been practicing medicine for 30 years. Yes, he's a psychiatrist, but he knows the physical attributes of how fibromyalgia works, and he's been in my corner more than once when I've felt like I was, literally, going crazy from the pain. Thankfully, I also have another MD in my corner now, and she'll be my primary care doctor as long as she stays in practice.

You are not just a doctor's patient, you are also their customer, and if you're not getting good service, don't be afraid to go somewhere else.