I feel honored and lucky to have been asked to share my fibromyalgia story over on Julie Ryan’s blog. She, too, is a fellow fibro warrior and an advocate for those who also live with chronic illness. I haven’t taken the time before now to share my entire story of how I came to a diagnosis of fibromyalgia. My hope is that my story will help someone else who is now in the position that I was once in: knowing something is wrong with my body, but not being able to name it. I believe that as more stories are shared, fibromyalgia will become less nebulous and individuals will be able to better advocate for themselves with doctors so they may get a correct diagnosis.
The Lightning Strike
That’s how suddenly my headache hit. Like a lightning strike to the right side of my head, it was sharp and insistent as it cleaved my brain. I grabbed my head and groaned. Then, as suddenly as the pain came, it vanished. Unfortunately, it left a trace of it having been there: numbness on the left side of my head and face. My left arm also didn’t feel right. While I still had control of my muscles, it didn’t feel like they were responding normally. If I scrunched up the left side of my face, it seemed to take forever for the muscles to relax once I had released them. The best way I could describe the feeling is if you stretch out silly putty, it will not snap back into a lump like a rubber band once you let go. Rather, it slowly re-forms with some resistance.
Obviously alarmed by what was happening to me, I called my doctor’s office to see if I should come in. I was advised to go straight to the emergency room. I asked a coworker to drive me. Unfortunately, I couldn’t leave the office without minimal drama because: 1) Word always traveled faster than gasoline on fire when something was going on in that place, and 2) I couldn’t walk without the help of co-workers and the wall because of how woozy I felt. After a few hours in the ER I came away with a big shrug and an order to follow up with my doctor.
Well, we know what it’s not
Thus began months of trying to figure out what was happening to me. I continued to have sharp headaches and facial numbness. On top of that, my limbs always seemed to be on fire. My primary care doctor was concerned about MS and blood clots. As a precaution against blood clots, he had me stop taking my birth control pills. Once the blood work came back normal, I was referred to a neurologist. The neurologist sent me for an MRI which, after having to badger the office for the results, came back normal. I was unhappy with this doctor’s unresponsiveness, so I moved on to a new one. He sent me for another MRI. This one was more thorough, to include other places on my spine and contrast.
A word about MRI’s: I never considered myself to be claustrophobic. That was, until, I had an MRI. I was inserted into a tube with very little room around me. It felt like it was about to be sent into cryostasis. The process seems to go on forever. And holy fuck, is it loud! Fortunately, I was given headphones with music and there was a mirror strategically placed so I could see my feet and out of the chamber. So my only real problem was feeling the need to pee really bad. I was stuck, so of course I had to pee.
The second MRI wasn’t quite as……pleasant? I had had more blood work done recently, so I had a massive bruise on my right hand. My veins like to play hide and seek with nurses and phlebotomists. More often than not, they end up needing to draw from the back of my hand. The nurse trying to find a vein for the contrast on the day of the second MRI also had a problem tapping a vein. She tried and dug around in the crook of both arms and failed. So she did the only thing that made sense; she beat the shit out of the hand with the massive, very visible and painful bruise to get the vein to show up. That vein was tapped. This time I had neither headphones nor a mirror. Panic settled in my chest and my hand held the panic button tightly. I made it through without pressing the button, but it was a horrible 45 minutes. The icing on the shit cake that was that day? It was Mike’s birthday. While I had my MRI, he watched the memorial service for the victims of the massacre that had taken place at our alma mater, Virginia Tech.
I had looked at the comments on my copy of the MRI cd before I had my follow up appointment with the neurologist. I knew my results were normal. I felt depressed and defeated, not knowing what was hurting my body. I tried to explain this to the neurologist when he expressed surprise at my disappointment. That’s when he cut me off and yelled at me. He yelled that there were plenty of people out in his waiting room who were sick and wished they weren’t. With a heavy amount of disdain, he wrote an order to be tested for Lyme’s Disease and left. After that and all my experiences leading up to it, I was super excited and ran right out to have more blood work done so I could get back in the neurologist’s office faster and have more interaction with him!
Yeah……no. I gave up.
At that point, the symptoms had seemed to subside. So I let it go. We wondered if it was my birth control that had caused all of this. A few months later I had a miscarriage. I decided to try birth control again. My symptoms came back almost immediately. That settled it for us. No more birth control. The next July, we welcomed Rachael into our family.
In January of 2012, I started having burning pins and needles in my head and limbs again. While I had had some fleeting episodes in the intervening years, (including a three week episode of debilitating back pain) this was the first time since the initial onset of symptoms that they were consistent and lasting. After a few months, back to my primary care doctor I went. This time I happened to see the head of the practice. She took me seriously and offered a few suggestions as to what could be happening. I had more blood work done, to include the test for Lyme’s. Once again, all normal. She gave me two options: a nerve conductivity study with a neurologist or taking Neurontin to make the pain stop. Having no desire to go through more dead end testing, I chose the drugs. I asked her if it was something I could take as needed, since my symptoms weren’t happening every day. She said yes. And then I did what most people do these days, I looked it up on the interwebs. Things like don’t suddenly stop taking Neurontin and could cause sudden, violent death did not make that option sound appealing. So I turned to chiropractic.
Sniffin’ on lemons and spittin’ in vials
“We believe the body heals itself. Do you believe that?”
Um, way to put me on the spot. They’re both looking at me. What am I supposed to say? Sure, tell that to anyone who’s died of cancer? Of course the body doesn’t always heal itself. Shit. It’s the voodoo I was afraid of. What do I say? What do I say?
“Um, no? Not for everything. I mean, maybe for some things. But not for…um….I don’t know. I’m open?”
This was my second visit to the chiropractor. In my first visit, I gave my history, had X-rays taken, and was told I needed to break up with Diet Coke. He believed it was possible I had aspartame poisoning which could, in part, cause the neurological symptoms I was having. At that point, I was so fatigued that I was averaging 4-5 12 ounce cans per day.
The X-rays showed that that my spine right at my neck was slightly out of alignment, so I was to start with two sessions per week. The chiro also agreed with my suspicion that it was hormones causing my neurological symptoms and wanted to do a month long test of my hormones. This involved a month long of spitting into little vials and freezing them. He explained that since a blood test is only a spot check of your hormones, submitting a month long sample would give a more accurate picture. (My OB/GYN said hormones wouldn’t cause these symptoms, but I was still suspicious as they seemed to spring up again around the time that I started having irregular spotting and bad cramping in between periods. That whole set of mess led to a diagnosis of adenomyosis.) You guys, you have no idea how hard it is to spit when it’s on command. Apparently sniffing lemons will help you salivate. So many a night there I was, parked on our couch, deeply inhaling over half a lemon and subsequently spitting.
As the weeks progressed, things did not getting better with the soreness I had come to experience in my neck and hips. In fact, in began feeling worse after sessions. In the evenings I walked around our house like a marionette because of pain in my hips. And then one day I was introduced to, dunh dunh duuuuuuuuunh, the Table of Torture. Supposedly it was a massage table. Supposedly for others, it’s five or more minutes in paradise. For me, it was pure agony. Rollers undulated up and down my back. It was tolerable, albeit still uncomfortable, in the middle of my back. But once it hit my lower back/top of my toush and my shoulder blades/neck, it felt like I had sharp boulders under me. When I said how awful it had been when my time was up, the assistant was genuinely shocked. It had been on the lowest and easiest possible setting.
I have a diagnosis
Not long after the Table of Torture, I stopped going to the chiropractor. I had been trying to stick it out, but the pain was getting to be too much. In addition, it took about an hour of travel each way and I had both girls in tow for each appointment. The stress of it all became too much for me. At the beginning of June 2012, I had a D & C to remove excess uterine lining that wasn’t expelled because of my adenomyosis. I thought that after surgery I was feeling better. That, however, was short lived. It was getting harder to participate in aerobics. The workout seemed to exacerbate my symptoms. It was also really painful in my lower back/butt to do sit ups or any kind of crunches. I couldn’t place my weights on my shoulders because of how tender they were. I noticed this at other times, too. Carrying in heavy grocery bags was murder on my shoulders and in the crooks of my arms. It was awful when I rocked Zoë to sleep at night. (And plenty of times it was all night. There was so much night waking, screaming bloody murder, and refusals to go sleep back in her bed. And, of course, more often than not, no one but mommy would do. More nights than I care to remember, I slept in our rocking chair because it’s the only place any of us could get some sleep.) I could barely play with Rachael and Zoë anymore because of how much it hurt when they climbed on me. And if I was on the floor with them, then they were climbing on me. I knew how bad it was getting when Rachael kissed me hard on the cheek one night and it made me scream in pain.
As August came to a close, I knew I needed to go back to the doctor. I was withdrawing from my family. I barely paid attention to my girls during the day. I lost patience so easily. I felt I was constantly screaming at them. I felt so exhausted all day, every day. The pain was becoming intolerable. After Mike had to work from home two days in one week to take care of the girls and me, I called the doctor. The doctor I had seen before had me see a different doctor. I hobbled in for my appointment that day, hardly able to look up. I had both girls with me, which made focusing extra difficult. When the doctor came in, I begged. I begged for help. I cried over how much pain I was in and how I just wanted it to stop. I said that I suspected fibromyalgia, that it all seemed to fit. Then my doctor said the words that I was dreading: How do you feel about going in for an MRI and evaluation with a neurologist and then reevaluating? I said no. I told her I had already been through two MRIs and they found nothing. I told her I had no interest in going through that again. She hadn’t realized I’d already had MRIs done. (Read the history. Come on.) But at least something different was happening in this appointment. This doctor who didn’t look much older than I listened to me. Not only had she asked how I felt about the MRI, she understood why I had no interest in repeating those steps. As she sat there, really looking at me in the eye, she asked me if I felt depressed and anxious. Well, yeah, I said matter of factly. Of course I was depressed and anxious. Starting to feel pain and knowing that it means I’ll be on the couch for the rest of the day with no means of alleviating it is depressing and anxiety-producing. My doctor was unwilling to call it fibromyalgia right away. First she wanted to see how I responded to medication. She explained that if I’m labeled with fibromyalgia, then doctors tend to be dismissive of other problems you may be having, simply chalking it up to fibro.
Where am I now?
I now have a rheumatologist to help me manage the fibro, while my primary care doctor manages my depression/anxiety. My cocktail of medications prevents me from having cocktails. Why they made medicine that prevents you from drinking when stress is a primary trigger for flares is beyond me. All of us are still getting used to this new normal. Mike has to remind himself that there are just some things I can’t handle anymore. It’s not a matter of sucking it up. While Zoë is old enough to understand pain and asks me if I’m okay, she can’t begin to comprehend that this illness is chronic. Rachael, on some level, understands that this is a chronic illness, but doesn’t really get how this affects me every day. She is frequently upset with me for not being able to handle having someone over to play after school. In one moment she’ll be the epitome of the oldest child, helping and caring. Quite often, she’ll offer to help me walk, (which is just holding my hand as we walk.) In the next, she’ll hang off of my neck in her hug or jump on me in a burst of exuberance. In the next, she’ll be whining and pitching a fit over why we can’t do this, that, or the other, not understanding that I’m not choosing to ruin her day by laying on the couch. Even I have to remind myself some days that I am sick. I wonder to myself why I’m so exhausted. Then it’s like, Oh yeah. Fibro. I have to force myself to pace myself and not overdo it. I have to force myself to forgive myself when the house is falling apart from a lack of clean dishes, laundry, and bathrooms. I have to ask for help. I have to fight back the notion that this isn’t real and that I’m over exaggerating; I have to fight back the thought that I’m just lazy or a hypochondriac, like my grandmother.
It’s not easy. Some days are better than others. Some days I get to experience a fresh new hell. Yesterday I spent the day with chest and back pain that made me worry about having a cardiac episode. Fortunately, I had seen on Twitter about costcochondritis, whose name makes me feel like it should come at a bulk discount and cheese samples.
Days like yesterday send me into fits of tears, but on the whole I try to stay positive and not let this define me. I’m not fibromyalgia woman. I’m Julie. I get stupidly excited over finding the right pattern of chevron for my friend’s baby shower. I’m Julie. I adore sweets like a Pooh Bear, but will also growl at you like a dog if you try to take away a good steak. I’m Julie. I’m a post-evangelical agnostic whose politics lean left of center. I’m Julie. I will correct you if you quote Star Wars incorrectly. I’m Julie. A gorgeous pair of shoes will make me say, Hello lover, like Carrie Bradshaw. I’m Julie. I’m a sarcastic introvert who screams at the tv when the Hokies are epically failing and they need to break the other running back’s knees. I’m Julie. I like tabletop gaming and am a terrible loser. I’m Julie. If I believe you to be a douche canoe, I will not be able to help antagonizing you so that you come down a peg or two. I’m Julie. I have never learned the girly art of tact and have therefore offended a lot of people accidentally. I’m Julie. The words I say when I offend those people usually end up haunting me for years. I’m Julie. I’m a college educated wife and mother of two wonderful girls, who I hope grow up to pursue what they love and kick ass while doing it. Oh yeah. And I live with fibromyalgia.