It has been a good 2 or 3 months since I posted much on a personal note and some folks may be wondering why the side-tracking into almost exclusively prophetic and news-related articles. Well, firstly, it’s because there is just so much happening in that arena, but also because I was in a rather long holding pattern awaiting the appointment with a top-notch Rheumatologist, and my “fam-doc” had started me on Cymbalta for the pain, which made the wait much more bearable. I was also purposely keeping my mind on other things. (If you’d like the background story see these previous posts: Good News and Bad News * Which is it gonna be? * Ain’t That A Kick In The Head * Cast Down But Not Destroyed) This Rheumatologist is also a researcher and professor, thus the long wait for an appointment.
As to my illness, the short version is: I have suffered with sporadic and often sustained periods of severe fatigue, pain, and bouts of weakness, from moderate to profound in severity. (Interefered with my activities of daily living, and ability to work). It’s been going on for years. (Diagnoses include Chronic Fatigue, Fibromyalgia, 3 sleep disorders…) The duration of these bouts of debilitation varies, and with intervention and effort and careful management, they generally improve and resolve to a degree over time. So it is all rather cyclic and recurrent. I had a mysterious and much more extreme “flare” of (all of these symptoms and more) simultaneously in ’09. It was so severe that it really frightened my husband and me. In the profound weakness, I actually fell unexpectedly, ruptured a disk, had back surgery 2 months later and 12 weeks of comprehensive Phsical Therapy to get my strength back. The Physical Therapist was startled at how weak I was, but with effort, I myself was surprised at the improvement after those weeks of therapy. At that point my husband and I didn’t understand it all, but ultimately we chalked it up as sort of a fluke and thought maybe part of the problem was a pre-existing spine issue, and I went on to have about a year of doing better physically than I had in a long time, enough so that I was able to work again for a few months. Something I hadn’t been able to attempt in a couple of years at that point.
But then in January of this year I began having flu-like symptoms, weakness more profound than ever before, unable to remain standing for more than 10 minutes or so before my knees would give out. I could barely brush my teeth. What was so startling was how rapidly I went from “ok” to “barely functional”. I had joint pain, stiffness in all my joints. It all pretty much stopped me in my tracks for a couple of months which led my doctors to have concern that I might actually be dealing with a either a neurological or an auto-immune disorder.
I saw a Neurologist at the local Medical University. He did his eval and multiple tests, and determined that whatever it was, was not based in an underlying neurological problem, though a nerve biopsy was never done. (I questioned this, but the doc said based on his other findings he did not think it was warranted). He suggested I go see a Rheumatologist next.
After several months of waiting for the appointment, I finally saw that Rheumatologist yesterday. He did his exam and took my history and looked at the abundant notes I brought with, took a urine specimen and about 6 vials of blood for 20 very specific blood tests. The good news is, based on his exam and my responses to his questions he said he does not expect to find an auto-immune condition, though the purpose of all the testing is to rule it out for certain. However, in case there is something “developing” he wants to continue following me and see me back in 6 months. He also seemed to feel that, since a nerve biopsy wasn’t done, the neuro basis of the problem may not have been 100 percent ruled out. (As I said, I questioned that too, but what can you do but accept their conclusions?)
But at this point hopefullly this most recent and protracted episode was, as my primary doctor hoped, (and I quote) “just the absolute worst flare of my fibromyalgia that I have ever had”. Whew! Not fun by any means, but auto-immune and connective tissue stuff is a whole ‘nother league of chronic illness in which the treatment is about as bad as the disease itself in terms of the complications and side effects.
So, PRAISE THE LORD and Thank you for your prayers. I’ll let you know if there are any twists when labs come back!
(See more on medical topics in the “drop-down from my “Nurse and Patient” tab at the top of the blog).