Flare Update, Part 3 of 3

For Part 1 of this mini-series go here, and you can find Part 2 here.

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Last Thursday I had my neurology appointment, a follow-up as part of the latest flare. I didn't have much to report. As far as I could tell all of my significant improvement was due to the topical estradiol prescribed by my gynecologist, and while the neurologist's new pain meds weren't as effective as the last, I really appreciated that the new prescription didn't come with any side effects (for me, anyway.)

Even though I was mostly without vulvar pain, I could tell the new meds weren't as effective because some old symptoms - which I didn't realize were connected to my pelvic pain until the drugs I started taking got rid of them - came back. The big one was provoked temple pain. This generally didn't bother me until I put on my glasses, at which point the pain started, and if I kept the glasses on, would increase until it became a monstrous headache. 

Needless to say, this symptom of my central sensitization leads me to wearing my contacts more than is healthy. My eyeballs miss my glasses. Now that we are in an overcast Bay Area winter, I am handling it okay, but when the bright sunny days return my choice will be between getting tension headaches from squinting into the sun or temple headaches from wearing sunglasses. And those headaches are worse without the more effective drugs. Boo.

The good news is that should I decide to go back to the more effective meds, my doctor has a few ways of handling the most aggravating side effect, as many of his patients on that medication experience the same thing. He apologized for not suggesting it sooner, as he didn't realize how much it was bothering me. (Argh! Note to self, speak up!)

This particular doctor is friendly and quite chatty, so when I gave him my PT update he mentioned that he had a lot of patients come to him because their PT had failed. He of course didn't have any data on what percentage those failed cases made of the total, and freely admitted that muscular anatomy was not his forté, but repeatedly seeing these frustrated patients made him question PT's effectiveness.

I was happy to share with him my own experience: PT was an immense help on a number of levels, and completely worth my while, even if it didn't solve everything. He then asked me to get one of my PT's cards so he could refer patients to her.

This exchange was a reminder to me of life from the physician's eyes: they practice in their own office, and often when they are networking or out at conferences they are with other doctors in the same field. Jack of all trade, master of none: when you find the masters in Western medicine, which for better and for worse separates the body and thus disease into its parts, these masters often don't have a clue as to how other therapies work or why they would be effective.

This story also illustrates how patients can act as messengers between the specialists: by speaking up and letting our doctors know what else is and is not working for us, we can help them serve all of their patients better.

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So that's the news from flare-up land. I'll keep up with the estradiol and PT exercises and see what happens...