Thursday, January 26, 2012


Well, well, well, it's been an interesting few days since I posted last. Turns out I was right about needing more steroids! I felt pretty crummy all weekend - shaking, heart going fast, pain really bad. I kept taking my heart rate and blood pressure as instructed... and on Sunday night, my heart rate went up 35 beats per minute any time I stood up. That's a pretty bad change, and it wasn't responding to fluids. So Monday morning, I called Endo Doc, who instructed me to start right away with an extra dose of steroids while she prepared to get some IV fluids for me at her office. I went to her office later that day... and thankfully, by the time I arrived, the steroids had kicked in, and my heart rate, while still high, was more stable and didn't change when I stood up. So we decided fluids would be superfluous - so YAY no needles! ;)

So what's going on? I had been so stable for so long. Endo Doc's theory is this: patients who have chronic pain have higher blood levels of cortisol (steroids). The extra steroids are needed for the body to be able to cope with the stress of dealing with that much pain. My pain is flaring very badly, and since I have no ability to make extra steroids, my body can't compensate, and my heart starts to go nuts, I shake, and my body can't stay hydrated. She also thinks that I may additionally have something called dysautonomia, dysfunction of my autonomic nervous system, caused by my autoimmue problems. This means that your nerves are damaged and have trouble regulating body temperature, sweating, heart rate, blood pressure, blood sugar, and digestion. This would explain a lot of my random symptoms, and it's something a neurologist would investigate further if I continue to have these issues. She said that I am such a "complicated" patient with so many interconnected issues that it's hard to tease out what issue is causing what problem.

Endo Doc instructed me to increase my steroids quite a bit for a week, then taper down over the following two weeks. I also FINALLY got her to write me a prescription for a steroid shot to keep on hand in case I can't keep my steroid pills down. It is very important to have on hand, and she's talked about giving me a prescription for this every time I see her for, um, the past 20 months, but somehow it never makes its way to my pharmacy.

Since we think that my adrenal issues right now are out of control due to my pain being out of control, she called over to Rheumatology, and they saw me without me having to wait a minute! I should also mention that Endo Doc was double booked, but still spent a good 45 minutes with me. The Rheumy PA recommended a trial of a new pain med, one that used to be used for seizures, but is now used for chronic nerve pain. I am not super excited about this med, but it's something I've discussed with doctors before, and it's time to try SOMETHING to give me some relief. Rheumy PA told me that my Rheumy doctor is "out of ideas" for how to help me because I'm so "complicated."

So... all in all, Monday was an interesting day, to say the least. I am so thankful for God's goodness in all this... I avoided an IV, the doctors responded promptly, were willing to think out of the box, and took time out of their busy schedules for me. Most important to me, they were NICE to me and did not dismiss my problems, even though they do not totally understand what is going on. Since Monday, my heart has settled down substantially on the higher dose of steroids, and I am feeling MUCH better! I started the new pain medicine last night... and today was better, pain-wise, so I really hope that the med ends up working for me! I have to slowly titrate up to a therapeutic dose over a few weeks. Also, thankfully, MY WOUND IS HEALING! It is looking smaller to me, which is fantastic! I first noticed the change on Monday... interestingly, we increased my methotrexate shots two weeks ago... wondering if that might be helping suppress the autoimmune stuff so the wound can heal! I have lots to be thankful for, even though my health issues are "complicated," it's simple to be thankful for the little blessings God brings!

Hannah ;)

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