The State of the Bleu

Things here have been all manner of stressful. It’s mostly not anything to do with me. And the stuff that is directly related to me is of such a personal nature that I really can’t discuss it here. But there is one issue that I kept promising to post about. I apologize that this is such a longtime in coming. It just seemed pointless to write until I had something substantial to share and for the most part I’ve only had a frustrating nothing.

On Monday January 30th, I woke up with a stiff neck. At first I just assumed I had slept funny and didn’t think much of it. By the end of the day my neck wasn’t just stiff, but in an incredible amount of pain and had spread through most of my arm. On Tuesday, I couldn’t even lift my head or maneuver myself into a sitting position without causing shooting pain in my neck. I literally fell out of bed to get up. Throughout the day I was still incapable of moving my head or lifting my left arm and I’d developed pain in my back, too. I was still operating on the idea this was caused from the stiff neck, since that was the main source of pain. And since I hadn’t dropped dead I was relieved to rule out meningitis. On Wednesday, I was able to sit up and get out of bed even though it wasn’t particularly pleasant to do so. I could turn my head a bit and I was able to lift my left arm. However, my back was definitely worse than the day before and felt like it was on fire. I described the pain to a bunch of people, including my father who is a nurse and some friends who deal with chronic pain. They were all concerned and offered various theories as to the issue. So, I made a doctor’s appointment for the next week.

Anyway, after a week I was still in pain. My neck was still sore and slightly stiff and even though I could move my left arm fine there was a definite ache. I’d also developed a dull ache in my left leg. But all that paled in comparison to my back, which literally was causing me so much pain I couldn’t find a comfortable position at all to be in and any movement I made was with an almost superhuman effort. I was miserable. And so it was in this state that I went to my doctor’s appointment. He seemed far less concerned than I expected him to be, but I supposed I was just not really capable of explaining how damn much I hurt. I have a pretty high tolerance for pain, though, so the sheer fact that I was complaining at all should have registered to him in my opinion. Plus, it had been a week and it was certainly not getting better. At my insistence he drew some blood for tests and then wrote me a script for a narcotic.

Over the course of the next week my situation didn’t improve. In fact, the most alarming symptom surfaced: my hands became stiff and painful. For most of the week I wasn’t able to even close my hand into a fist or flatten my fingers. At my follow-up appointment that week I was told I had fibromyalgia. My response was to inquire what other possible cause of the pain because as far as I was concerned that was a non-diagnosis. For one, there is no test for fibro. In fact, it’s usually diagnosed in process of elimination style by ruling out other things that can be tested for. Furthermore, there is no treatment for fibro, which given the excruciating amount of pain I was in was not entirely acceptable to me.

In my stunned state I neglected to inquire about the results of whatever tests he’d performed, but I went home and informed my family of my diagnosis. Not surprisingly, my family reacted with pretty much the same response I had. My father strongly advised seeking a second opinion by way of getting a new doctor entirely and suggested I see a chiropractor. I had actually been looking for a new GP that was more convenient to travel to now that I’m not in Albany, but so far hadn’t found anyone. But I did find a chiropractor who took me in later that week. I was petrified to go, but at this point I figured if he snapped my neck and accidentally killed me at least I wouldn’t be in pain anymore. What did I have to lose? He didn’t have any epiphanies to offer on the cause of my pain, but after my appointment I was able to move my neck without issue. He told me to come back in a week and I did.

I saw the chiropractor a total of five times. And then I stopped going since he was not covered under my insurance and his services were not cheap. I also didn’t feel there was any substantial progress being made now that I wasn’t in excruciating pain. About a month after I stopped seeing him I called and spoke with him again and he seemed in agreement with me ceasing my visits, stating that it was possible that continuing to be adjusted without noticing any improvement might be more detrimental than helpful.

Meanwhile, I had two more visits with my doctor during which I was tested for a bunch of stuff including Lyme that all came back negative. I continued to stress my discomfort with the high level of pain I was in and all I was getting were various prescriptions for things I didn’t want to take. I was scheduled for a third appointment and got stuck in traffic en route. I arrived exactly 15 minutes late and the receptionist refused to let me see the doc even though the waiting room was virtually empty and it is common knowledge at the office that I don’t drive and I live outside of Albany! It was there policy and they were sticking by it, though. I was furious. When I got home I found a letter from the office in my mail. A form letter stating that the doctor no longer wanted to see me as a patient.

It took me about a month to find a new doctor and straight after that I had a slight insurance snafu that pushed my appointment smack dab in the middle of my endless jury duty. I also found another doctor who was supposedly a specialist with fibromyalgia and set up an appointment with him as well. Unfortunately since I was a new patient who required an extensive physical, rescheduling the appointment with the GP meant I was shunted to the very end of the availability and I was stunned when they told me the first appointment they could give me was October 5th! I accepted it, thinking this was probably a bad sign, but I did have the appointment with the fibro doc before then so I was hopeful somebody would be able to help me.

Well, the fibro appointment turned out to be almost as much of a non-event as my initial GP’s visits were. Honestly, I felt like he was scared to touch me and when I left I had pretty much decided that specialist or no there was no point in seeing him. So, I went another six weeks not having any idea why I was still dealing with this chronic pain issue . . . and yesterday I finally had my appointment with my new doctor. And to sum up everything, I’m very pleased with how proactive she’s being about this. She took a ton of blood for various tests, most of which I’ve forgotten what they are, though I know she’s doing another test for Lyme. She isn’t ruling out fibro, since a lot of my symptoms do mesh with it, but she’s more strongly concerned that the issue might be nerve damage. Or possibly related to my thyroid, though I have been tested for thyroid issues at least twice before in my life and had normal results. She was very sweet and incredibly thorough and mostly I give her huge props for how well she handled Uschi because I found out during my blood draw that she is terrified of dogs. Uschi was very protective, in a non-aggressive way, during my examination and every time the doc moved she would position herself right next to her, making sure the doc knew she was attentive to whatever was going on. It was honestly pretty hilarious. Anyway, I have an ultrasound in a week or so and hopefully am hoping something will come of that or the blood work to shed some light on the pain issues.

Suffice it to say I’m kind of in agony today after being poked and prodded so extensively. My back and neck are definitely making it known they are not happy. But for the first time since this all started I actually feel confident that I’ll get some answers. Hopefully, they’ll be the kind of answers that can we can do something about and even if they aren’t it will be a great relief to have a concrete diagnosis.

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