Fibromyalgia Awareness Series – Make Fibromyalgia Visible, Part 4: My Story (How I Came to be Diagnosed with Fibromyalgia)

 

 

Thank you for joining me as we make fibromyalgia visible. Click here to read part 1: “”What is fibromyalgia?”,  here to read part 2: “How is fibromyalgia diagnosed?”, and here to read part 3: “How is fibromyalgia treated?”

**********

Some of you know I don’t like talking about my illness, mainly because I can’t stand pity, and that’s often what I receive when I do mention that I have fibromyalgia. But in honor of Fibromyalgia Awareness Month, I am sharing my story with the hope that it helps at least one person, someone who is stuck fast to the couch, unable to move without excruciating pain, and even then wondering why in the world it takes so much effort just to get up off that couch.

Being such an active person all my life, when I began to feel this exhaustion and pain, my first thought was, I’m dying and no one can even see it. Please know that you are not crazy for thinking this. You’re probably not dying either, but it does little good to say that when every fiber of your being screams in protest to the contrary. Most importantly, know that you are not alone. Although it will likely take months, even years, to obtain a diagnosis – heartbreaking, long, frustrating – months/years, you can get there (see part 2: “How is fibromyalgia diagnosed?”). Have faith. It took approximately 18 months from my first symptoms, as well as numerous tests and three specialists, before it was finally confirmed that I have fibromyalgia.

There are four major events in my life that I believe led to my fibromyalgia: an emergency cesarean for the birth of my second child, a tubal ligation, a hysterectomy due to the build-up of scar tissue from those surgeries, fracturing my foot and ankle in several places after a fall from a bridge, and years of the stress of fighting to gain custody of my step-daughter. I was 29 – 33 years old during that time. I don’t know for certain that these experiences caused my fibromyalgia – there is not yet a definitive cause of the illness. These are only my theories.

My first ‘clear’ memory of the pain and exhaustion is when my family was celebrating some holiday, (sadly, I don’t even recall what holiday it was), at my parent’s home. Everyone was eating, talking, laughing, having a grand time, as we always do when getting together. But I was stuck on the couch, unable to fully wake up, unable to move, and so angry that I couldn’t join in the antics. My sons were still toddlers at this point, so I also felt guilty that I was leaving my husband, my parents, and my sisters to care for them, not to mention depressed that I couldn’t go outside and play with them. I kept hearing various family members ask, “Where’s Deanna?”, and the concerned replies, “She’s sleeping on the couch. She’s not feeling good, again.” Again. How long had this been going on? I wondered. Had my mind not been so foggy, I could’ve pinpointed exactly how long it had been going on.

In high school I was captain of the auxiliary corp, (flag and rifle team), I acted in plays with my speech and drama club, and volunteered as the junior English/Lit teacher’s assistant in my senior year. In my early 20s, I held down four jobs, (at once), one of which was an event coordinator; I traveled daily  to four different cities in a 200 mile radius.

I didn’t know the meaning of tired.

The trauma of that emergency cesarean started it all. My husband and I had already decided that our second son would be our last child, so having my tubes tied was already planned. That was supposed to have happened immediately after the birth, but because of all the complications I endured, including my heart stopping, my OB/GYN postponed that surgery. He knew it would take a while for me to recover, and he was right.

It wasn’t until three months later that I had the tubal ligation. For a while I felt fine, even with a 2-year-old and an infant to care for. But gradually, over the course of the following year, I had excruciating abdominal pain, bad enough that I would double over, and soon be on my knees, crying my eyes out. It didn’t help that, during this time, we were fighting for custody of my then 13-year-old step-daughter. The stress that alone brought on was enough to make me a nervous wreck. My OB/GYN was kind, and determined to help me find the problem and treat it, if not eliminate it. I had several blood tests and ultrasounds, but he couldn’t figure out what the problem was. I also began seeing a psychiatrist and was diagnosed with depression and anxiety disorder. My OB/GYN hoped it was just the stress, and that I would get better with time. I didn’t get better though, I only grew worse.

The doctor suspected endometriosis. We tried several different treatments for a full year before he finally relented to doing a hysterectomy. He hadn’t wanted to do that, simply because I was so young, but I was in so much pain by that time I would’ve let them cut out a lot more than my uterus. As it turned out I did have a small amount of endometriosis, but it was mostly just scar tissue that had been causing the pain. Just.

Although I only took three months off work to recover, it took a good six months before I began to feel myself again. And the good news was that I felt like my old self – I had more energy, I was able to play with my sons, I now had a job I loved, everything was great. It’s a good thing too because it was around this time that we began searching for a diagnosis for my son, who, at 3-years-old, was exhibiting extreme anti-social behavior, among other things. It took nearly three years to hear a psychologist tell us he had autism. And then there was the custody battle. 

Feeling like my old, energetic self lasted nearly a full year. I began to take it for granted, and now of course, I’m sorry. I had already started feeling tired a lot more often, and aching all over, as if I had the flu, when we took our first beach vacation with our sons. They were 2 and 4-years-old and this would be the first time they’d see the ocean. My husband and I hadn’t been to the beach ourselves in five years, so I really looked forward to it. We had a great time. Just being away from it all helped a lot, and there’s something about the salt air of a beach community that does me a world of good.

On our last night at the beach, Independence Day, we were watching fireworks from the boardwalk between our condo and the beach. My youngest son dropped his cup and so, being the super-mama I was, I decided to lower myself down to the marsh below and get it for him. I sat down on the bridge and my feet just skimmed the top of the grass, so I figured I was only an inch or two away from the ground. But when I dropped myself down I discovered the grass was more like five feet from the ground, not a couple of inches. Since I hadn’t steeled myself for such a drop, I fell hard, and only on my left foot, and on a rock, and right beside a fire-ant town.

With my leg on fire I knew I had to get out of there quick, but I couldn’t put any pressure at all on my foot. Since the marsh was surrounded by a fence, there was no way my husband could get to me. I sat there for about fifteen minutes, the ants eating away at my leg, my husband running back and forth across the bridge, trying to find a way to me, panicking, and my poor little boys crying their eyes out. When he finally said he was going to call an ambulance I got up the nerve to force myself to stand up and get myself out. I DID NOT want to be carted off in an ambulance!

I stood on my right foot and hopped as best I could back over to where I’d dropped from, then reached my arms up so my husband could pull me back up. I couldn’t help at all, so my back scraped the bridge as he lifted me. He carried me back to our room and though he wanted to take me to the hospital, it was already midnight, and I didn’t want to put the boys through an all-nighter in a hospital. He iced my foot and ankle down, which were quite swollen, but I figured it was just a sprain, (I’d never in my life had a broken bone). He also put ice on my leg, which was angry red and swollen to twice the size of what it should’ve been.

By the next morning I’d had no sleep at all because I’d cried all night in pain, and my foot was about the size of an elephants. We were supposed to be on our way home, but instead we went to the hospital. Let me tell you, if you ever plan on getting hurt, do it in Cape Canaveral, Florida. The doctors, nurses, and the administrative staff at that hospital were the most accommodating I’d ever encountered. My foot and ankle were x-rayed but because of the swelling, the doctor couldn’t see the bones at all. He gave me crutches, and some pain medicine for the trip home and told me to see my doctor as soon as I could.

That was the beginning of the end of my active days.

I had never particularly cared for the primary care doctor I’d been seeing, but I’d only seen him a couple of times, since I was hardly ever sick, so I didn’t realize what a nightmare I was facing. It was four days before I could get in to see him about my foot, which by now was even bigger, though I never would’ve dreamed that could be possible. This doctor took one look at my foot and said, “It’s just sprained. Put some ice on it and take an aspirin.”

I just looked at him, dumbfounded. I couldn’t believe he didn’t even order an x-ray! For the first time in my life I spoke back, (I had never been very assertive where doctors were concerned). I told him I at least needed an x-ray and some pain medicine. The second I mentioned pain medicine he was done with me – he actually rolled his eyes – but that was okay because I was done with him too.

I knew I needed to see an orthopedist, but our insurance required a referral. As much as I hated to, I called the doctor back and asked for a referral. He refused. By now I was furious. I called the insurance and explained the situation. Fortunately I had gotten hold of a nice woman who cleared a visit, and I made an appointment with an orthopedist, but the earliest one he had was two weeks away. By the time I went to the appointment I’d had very little sleep because of the pain, and my arms were becoming quite sore from using the crutches, (I still couldn’t put any pressure on my foot at all).

The doctor looked at my foot and scrunched up his face. He took x-rays. After looking at them, the first thing he said was, “You should’ve come in a lot sooner.”

Are you kidding me?!

I explained my situation and luckily he was nice about it. He treated me like I mattered. He told me my foot and ankle were fractured in so many places he’d stopped counting after he got to around 30. Because it had been so long since the initial accident, there was nothing he could do, the bones were already growing back, crooked. He did the best he could. He gave me pain medicine and saw me every couple of weeks for the next three months. I also went for physical therapy three times a week for the next six months. It took that long before I could stop using the crutches. After that, I spent the next three months in a brace. Eventually I was able to walk on my own again, but that was only the beginning of the real problems. 

Most people with fibromyalgia can tell you the exact date they were diagnosed. I can’t. Over the next year, as my symptoms grew worse and more numerous, I saw three different medical doctors in a desperate search for someone to believe me. I’d tell them how badly I was hurting, how exhausted I was, that most mornings I couldn’t even get out of bed. They’d look me up and down, noting my petite form, my young face, and tell me I was imagining things. How could someone so young and healthy-looking be experiencing that much pain?

I kept searching.

One day a co-worker asked me what was wrong. I must’ve had a pained expression on my face. I was in a lot of pain that day, but had forced myself to “get over it and go on”, as I’d been doing for the past year. What else could I do? I’d heard this question quite often since the accident with my foot, but most of the time I just made something up without “truly” answering: “I’m just tired, I’ll be all right.”, but for whatever reason, (fate I believe), I broke down that day and told this co-worker everything, and how I couldn’t seem to find a doctor who believed me. She was sympathetic. She told me what a kind, caring person her own doctor was, and suggested I give her a call. It was an hour’s trip from my home, but at this point I would’ve driven across the country just to hear someone say “I believe you.” I made an appointment, and finally – finally – began getting the help I needed.

My co-worker was right – this woman was the most caring doctor I’d ever met in my life. She asked questions, she listened to me, and she believed I was really hurting. She instantly ordered a slew of blood work, and an MRI, and referred me to a rheumatologist.

The blood work consisted of testing for lupus, hyperthyroidism, arthritis, and more. By the time those test results had come in, all negative, it was time for my appointment with the rheumatologist. I admit – I may have been a bit biased for when I saw this man was older than dirt and even trembling as he examined me, I didn’t have much hope. He diagnosed tendonitis in my elbow, and bursitis in my knee, and gave me cortisone injections for those. He also ordered physical therapy for my lower back, so once again I was going for that three times a week.

At the very end of my visit with him, he said, “Oh yea, you also have fibromyalgia,” and he handed me a pamphlet. He didn’t tell me what it was, or ask if I had any questions; he just walked out of the exam room. My mom had been diagnosed with fibromyalgia a couple of years before, so I decided I’d just ask her about it. But she wasn’t able to tell me much either. All she knew was all I knew – whatever this stuff is, it hurts! Since I now had a caring primary physician though, I made a list of my questions, and went to my next visit with her prepared.

During that visit, the doctor reviewed my test results with me; even though they’d already called to tell me the results were negative, she actually took the time to show them to me, and explain what each one meant. I was astounded. No doctor had ever done that for me. Then she took the rheumatologist’s report out and scanned through it, more or less talking out loud to herself. I heard her say “tendonitis” and “bursitis”, but then she put that report away and said, “Okay, let’s figure out what’s next.” I asked her, “What about the fibromyalgia?” She looked confused, and for good reason. When I told her the rheumatologist had told me I had fibromyalgia, she got his report back out and read it word for word. He hadn’t even written the fibromyalgia diagnosis on the report!

Although he’d told me I had fibromyalgia, there were still a few illnesses I hadn’t been tested for as yet. She sent me to a neurologist to test for Multiple Sclerosis (MS), as well as anything else he might think was needed. It was three months before I could get in to see the neurologist.

Fortunately my doctor continued to treat me while I waited to be tested for all manner of things. When we’d discover a particular treatment didn’t work, we’d try a different one. None of them “fixed me”, but we eventually came to a combination that helped me feel as well as I was going to feel, for the time being anyway.

I got lucky – the neurologist was a lot nicer than the rheumatologist had been. After a physical exam he ordered an MRI on my brain, (even though I’d already had one a few months earlier). He told me he suspected MS.

It seemed to take a lot longer to get those test results back than it had the first time. No one was calling me. Finally I called the neurologist’s office and asked about the results. After being put on hold for way too long, a nurse came back on the line, (I had talked to a different nurse before), and the first thing she said was, “Oh my God honey, have you had a stroke?”

I was struck dumb.

First of all, why in God’s name would you say “Oh my God” to a patient after having looked at their test results? Second of all, why would you ask the patient their own diagnosis, much less ask them if it was a stroke?!

Before I could even think what to say she put me on hold again. The doctor himself got on the line next and told me he’d discuss the results with me when I came in to see him in two weeks. For two solid weeks I did nothing but worry that I’d had a stroke, and had no idea what to do about it. That was the longest two weeks of my life.  

When I did finally get to see him again, the neurologist told me he didn’t think I’d had a stroke, but he showed me the MRI scan and pointed out where this “old infarction” on my brain was, by pointing to the place on my head. We figured out that must’ve been from an accident I had as a child, when I’d hit my head on a rock and had to have seventeen stitches. He said it was nothing to worry about. However, the MRI did make him even more suspicious that I had MS. But that test alone was not conclusive enough to confirm the diagnosis. I would need a spinal tap for that. Probably needless to say, I was scared to death, and I guess he saw that because he told me I didn’t have to decide right away, that, since my doctor was treating me anyway, there wouldn’t be much difference in the treatment if I did indeed have MS. So I had time to think about it.

That was one of the hardest decisions I’d ever had to make. I don’t know why but the thought of a spinal tap scared me to death. By the time my next visit with him came around I’d decided I wouldn’t have the spinal tap. I was just too afraid.

When I next visited my medical doctor, she reviewed all this information and shook her head back and forth. She didn’t know what to do with me. But she was not about to give up. She ordered another ANA to test again for lupus, explaining that the accuracy of the test was sketchy, and scheduled an appointment with a different rheumatologist, (I’d told her I didn’t like the first one). This man was apparently the best in the area, very sought after, meaning it would be another nine months before I could get in to see him.

While I waited, my doctor continued to see me once a month, keeping a close eye on the results of my treatment. We discovered massage not only didn’t work for me, but actually threw me into a major flare, (though I suspect that may have been due to the inexperience of the massage therapist), so we tossed that out. I continued to have physical therapy, even though it was exhausting just to get myself there three times a week. I heard about Reiki from a co-worker with fibro and thought I’d give it a try – why not? It worked! Although I still wasn’t “myself”, I was beginning to accept that I never would be, so I was grateful to at least have something that made me feel a little better.

When I finally went to see the rheumatologist, I felt blessed. Although he didn’t have much of a bedside manner to speak of, he was nice enough, and he obviously knew his stuff. He’d reviewed my medical history – all those tests I’d had performed over the past year – and thoroughly examined me, asking me questions that no one had asked yet. He told me that I indeed had fibromyalgia, but he felt that was more a result of an underlying cause, in essence a symptom, and he was concerned that I may have lupus or MS. He tried encouraging me to have the spinal tap, but I still wanted nothing to do with it. I was okay with another ANA, since it was only a blood test. I’d had the one that was negative, and the one that was positive; he told me one more should tell us if I indeed had lupus or not – the decision would be based on “2 out of 3”. It didn’t take long to get the results of that test back. That test was negative, so it was decided that I didn’t have lupus.

I never did have that spinal tap, so I could very well be walking around with MS and not even know it. But I’m not overly concerned about that because the treatment wouldn’t be much different than what I’m receiving to this day. The medication may be different, but there’s no cure for MS either. I figured why add another disability to my profile? I also worried about such a diagnosis increasing our insurance premiums, and I didn’t want to put even more stress on my family. And at least, thanks to a caring doctor who keeps a close eye on my treatment, I’m walking. Without that, I most likely couldn’t.

The ensuing years have resulted in nothing more than continuous, and sometimes changing, treatment, with the occasional blood test and/or MRI thrown in when I have various unusual symptoms. I’ve been blessed to have that same, caring doctor all this time. Yes, I suffer with fibromyalgia, but I refuse to let it take over my life. I fight it with everything I’ve got, and then some. While there are many things I could do to improve my symptoms, a lot of those things I just don’t feel like giving up yet, (like riding the lawn mower – sorry Dr. Pack). I take each day as they come, and do what I can when I can and what I have to when I have to.

I’m also beyond blessed to have a caring family who supports me. They don’t always understand, rarely do they understand, but you don’t have to understand everything about someone to love them. I thank you, my family and my friends, for always being there for me, for supporting me, for loving me unconditionally. Without you all, this life would not be worth living.

**********

I know this has been a very long story, and I appreciate you all for taking the time to read it. My hope is that, by sharing my experience, someone who is stuck fast to that couch will be encouraged enough to get up off of it, even though it’s going to hurt like hell, and get out there and find help. Tomorrow, for the last part of this series, we’ll talk about how you can do just that, and review anything you’d like to talk about concerning the series. Together, we can make fibromyalgia visible.   

This whole series is meant to help, so please do leave a comment and I will reply at my earliest convenience. We also appreciate any information you have that you feel may help someone. If you’re comfortable with it, please feel free to share your own story in the comments on any of the posts in this series.

Meanwhile, I appreciate you spreading the word – via your own blog, forums, word of mouth, Facebook, Twitter, (use #fibromyalgia hashtag and any others you feel appropriate) – however you like. We can revisit any post in this series at any time.

One more part to come:

• Part 5, Sunday, May 16^th: What you can do to obtain a diagnosis, (whether it’s fibromyalgia or not). Series review and Q&A.