In previous blogs, I have shared a little of my journey since 2006 getting diagnosed with Fibromylagia and Osteo-Arthritis. I know many of you are new readers, so I will add a quick review of the past few years.
I am prior Active Duty Air Force, and prior Air Force Reserves. When we moved to a new base in 2005, and I attended my first weekend with my new Reserve Unit, they had to take me to the Emergency Room. Being part of a medical squadron, I was surrounded by Doctors, Nurses, and Med Techs, who all had different speculations as to what was happening to me. I had been sitting in class watching a video when I noticed I could no longer focus on the tv, or any object in the room. I could hear the instructor speaking to me, but I couldn't understand what she was saying. My hands both started to tingle, and my speech was so slurred that it came out mumbo jumbo rather than what I was attempting to say. My right hand went numb, then my arm, then half my face, and then the migraine set in full blast. Some of my new coworkers were convinced I was having a diabetic episode. Others thought I was having a mini-stroke, and some others thought I had Bells Palsey. So off I went to the ER, just to sit around for three hours, by which time all the symptoms dissipated leaving only a migraine so severe that I felt like I needed to sleep wrapped around a toilet. Of course, the ER found nothing. Granted, they DID nothing, not even an MRI, but what do you expect from a military hospital? (Unless something is hanging out, or poking out, or your blood pressure indicates your heart is about to burst, very rarely is anything done in a military ER... but I digress...)
So... In follow-up, I had to see my provider. Again, due to the military health system, I wasn't able to see MY provider until several months later. So in the meantime, I was seeing Dr's who weren't really that interested in learning more about my symptoms, and just shrugged it off as a migraine or depression. Finally, I was able to see my provider. Truly, a provider worth keeping! He ran a whole slew of tests on me. Sent me to a Rheumatologist, Neurology, and would have had a sleep study done on me, but time never allowed that. He had determined from our very first visit that I had either Fibro or Lupus, in addition to what he was sure was at least one form of arthritis. So after all the referrals, and all the lab work, he informed me that I did not have Lupus or Rheumatism. I did have Fibromyalgia and Osteo-arthritis. However, he was still at a loss as to my headaches and the episode that took me to the ER in the first place. So he concentrated on trying to control my body pain and keeping my stress down which appeared to make both the body pain and the headaches worse. I left that base and that Dr with a good plan in my mind and a good foundation for how to treat myself, even if the headaches (aka mini-strokes as so many of my family were convinced I was having) were left undiagnosed.
Now... to my current situation.
We moved here to our new assignment. I am no longer in the Reserves because my last unit just did not know what to do with a someone who has Fibro. They were all witness to my 'episode' and were convinced I was not deployable, so I was simply taken off the roster and transferred to Ready Reserve status. Fine with me... I think... I dunno... lol I go to meet my new provider who informs me of two things: one- he has no idea what Fibromyalgia is really and so he needs to do alot more research before deciding how to treat me and two- he has no past medical history to go off of because my medical records were lost in transit. Go figure.
So here I am a year after the move and am still in the midst of getting rediagnosed. I have been to see a Rheumatologist. He has changed my work out routine. I was working out three times a week, yoga with light pilates. He says that is not enough. He agrees I need to keep my workout low impact, but I need to work on a bike or elliptical machine to get my heart rate up to 120 for ten minutes. This will better release the pain killing endorphines that my body does not make enough of like a normal person's body does. He is also putting me on Flexoril to help me reach REM sleep at night, since my sleep patterns are obviously out of whack and that adds to the body pain and stress. He also told me I need to take better care of my feet. No more flip-flops for me (a HUGE transition for me as I LOVE to go barefoot or go out in all weather in just my flip-flops!) and I have to invest in good arch supports for ALL my shoes. I guess the thinking is that if I can keep my feet healthy, and keep them from continuing on their spreading and flattening then I will also be able to prevent further ankle, knee, hip, and even lower back problems. We shall see. sigh... good-bye flip flops....
Now here is the interesting part. To be honest, once I was diagnosed with Fibro, I was ready to just take it and run with it and let that part of my life work itself out. My greatest concern was and is these 'episodes' where I lose the ability to speak and focus, where my right side goes numb, and then I am immobilized by a severe migraine. I did online research... all of which pointed to my family's worst fears- I was having mini-strokes that were not being diagnosed or were being ignored. However, while I was at this Rheumatologist, he shared something with me no Dr so far has. He was telling me to get a referal from my main provider (military Dr) to a Neurologist. He said that these 'episodes' were a type of migraine- a hemiplegic migraine. He listed off the symptoms and I experienced that ah-ha! moment! Granted, I have not had them officially diagnosed by a neurologist! But this news is WAY better than thinking I was having mini-strokes, which are largely undiagnosed or misdiagnosed in women today.
So I am learning about these types of migraines, and waiting on a referral to a neurologist and whatever slew of tests he will need to do to determine if this is in fact what I am experiencing.
Until then, and even after, I am learning to live with it. lol