My journey with fibromyalgia (often shortened to "fm" or "fibro") started in the same place so many others do - with a rough, traumatic childhood. I also have a genetic pre-disposition to fibro, though, as my estranged grandmother also has a fibromalgia diagnosis. Nobody knows for sure what causes fibromyalgia, but we do know that having childhood trauma or a family member with fibro increases your chance of being diagnosed with it.
It is not the only health problem I have. I'm also lucky enough to struggle with asthma, hypermobile joint syndrome, cubital tunnel syndrome with nerve damage in both hands, orthostatic intolerance, and chronic fatigue syndrome (AKA Systemic Exertion Intolerance Disease), as well as anxiety and depression.
As a kid, pain was something that I knew well. I was very clumsy, like many other FM children, and my hypermobile joints meant that I was susceptible to sprains, strains, and dislocations. By age 15, I had dislocated my shoulder and multiple fingers, sprained my ankle 3 times and I suspect I sprained my back at least once. I cannot begin to count the number of times I "twisted" my ankle or shoulder or neck. I had pain that wasn't related to injury, too. It's hard to describe, but today I would recognize it as fibro pain. At the time, my parents and my doctor wrote it off as growing pains. They didn't believe me. My father thought I was a hypochondriac. Instead of letting my body rest and heal, I learned to "push through it" and then crash later. I am certain that if I had gotten the medical care I needed as a child, then my joint pain and fibromyalgia would not be as severe now. But I didn't reach a diagnosis until I was about 20.
I had been "achy" for weeks straight with no relief. I was incredibly stressed out, my baby sister had died a few months before, and I was commuting 45 minutes to work two minimum wage jobs about 55-60 hours a week with no benefits. I was driving home, and it felt like someone had stabbed me in the arm. It was so intense and so painful that I had to pull over. My stomach began to hurt as well and I thought something was seriously wrong. The pain wasn't going away. I called my father and insisted that he pick me up and take me to the hospital. He couldn't understand the level of pain I was in, or how awful I'd been feeling lately, but he came anyways. I got in the car, and he berated me for wasting his time, that this wasn't a medical emergency and I was overreacting, being a hypochondriac as usual. Overwhelmed by the pain, the noise, and being yelled at, I had a panic attack, which naturally triggered more yelling on my dad's part and an asthma attack on my part, and by the time we got to the hospital I was in crisis. I couldn't breathe or speak and I was in incredible pain. I couldn't function. The doctors gave me a breathing treatment and some sedatives but couldn't find any cause for my pain, and explained that I probably had fibromyalgia, a chronic pain disease associated with anxiety, and I should talk to my family doctor about it.
When I did, my doctor told me that fibromyalgia was a fancy term for anxiety, and that it wasn't a real illness but a physical manifestation of anxiety, and that he didn't diagnose or treat it as anything other than anxiety. He gave me some sleeping pills and some anti-anxiety pills and told me to talk to a therapist. I didn't bother.
The pills didn't help. My pain got worse. I became constantly tired. I would experience flares where I could barely function on some days, while on other days I felt almost normal. Pain-free days became a thing of the past as I got older. I became more forgetful than I had ever been before, more easily confused and overwhelmed. It was like there was a dial for sensory perception somewhere in my brain and someone had accidentally left it turned all the way up.
My doctor's dissmissive attitude and my history of being called a hypochondriac convinced me that no doctor was ever going to take me seriously, so I did the research on my own. I learned the names for my symptoms and what I could do to make my life better. I tried to exercise regularly, eat healthy, and take my vitamin D supplements. It got better for a while. I thought I could manage. I moved to an apartment closer to my work and got into the habit of doing yoga every day. I got back to my daily life. I did things like going out clubbing and drinking. I took up painting. I was living my fabulous exciting 21-year old life. I made tons of friends and didn't tell any of them I was secretly sick. My pain didn't define me or hold me back. I came out as a lesbian and the woman I would later be engaged to moved in with me. Everything was wonderful.
And then I crashed.
I got to a point where I could no longer push through the pain. My IBS-like symptoms got worse and worse, and so did everything else. If I thought my pain had been bad before, it was nothing compared to the pain I felt now. It was crushing. I could do nothing but lay in bed and cry. I forced myself to go to work. I was throwing up daily, even at work. The constant nausea was unbearable. My asthma was acting up. My joints became more unstable than ever and I began to gain weight uncontrollably. I would forget the names of people and objects. I would drive somewhere and get lost because I didn't know where I was going. I would get turned around in the mall I had worked in since I was a teenager.
I got fired from my job because I missed two days in a row. I had been in the hospital for abdominal pain caused by gastritis from taking too much ibuprofen, and then for an asthma attack brought on by my GI distress. I had a note from the doctor. It didn't matter. They told me they needed someone more reliable. I was devastated. I had never been fired before, I had been aiming for a management position and I was the best salesperson they had. I found out later that they suspected I was a drug addict because I was throwing up so much.
My girlfriend supported me financially while I "recovered". I started seeing a new primary doctor, who diagnosed me formally with fibromyalgia and a few other things. I got a new job at the burger king with my girlfriend. I rearranged my life around doctor appointments and medical tests. I starting taking xanax for my anxiety and zofran for the nausea. But the pain continued to worsen and my joints became more unstable than ever. I stopped exercising and doing yoga out of fear of spraining something and out of sheer exhaustion. I started taking Neurontin for pain, but it never really helped my fibro pain very much.
I saw a rheumatologist and a gastroenterologist. They confirmed my diagnosises but didn't help much besides that. I was told that fibromyalgia isn't a progressive illness, but my reality seemed to be the opposite. It just got worse and worse. I stopped going out at night. I had long since stopped drinking, but I stopped seeing most of my friends as well. They told me I wasn't fun anymore and I couldn't argue with that. One day I realized that my life consisted of going to my part time job and then coming home and getting into bed. I starting spending all my time in bed, either reading or browsing the internet or sleeping. I rarely wrote, painted or played guitar anymore. I became a shadow of my former self. I started smoking weed to cope with the pain and nausea, which actually did help. It was shocking because I'd been so anti-drug for so long. I found that I got more done when I was high, I slept better and I was less tired, but finances were really tight between my decreased income and my increased medical bills so we couldn't afford to have weed all the time.
I tried to find a balance between resting and working. But it was so hard. Work made me so tired. On days I worked, I couldn't do anything but sleep afterwards. Every day of work required two days of rest. My girlfriend and I got engaged and she needed me to drive her everywhere because she lost her license because we couldn't afford to keep up our car insurance and she got pulled over. I started calling in to work on a regular basis, and when I was there I had so many medical restrictions there wasn't much I could do. I was overwhelmed, tired, in too much pain, and eventually I quit my job with no intention of finding a new one. I couldn't work anymore, I just physically couldn't even get out of bed sometimes. I read somewhere that 80% of fibro patients stop working fulltime, but I had always thought I would be able to push through the pain and exhaustion. I thought my fellow FM patients were lazy and not trying hard enough, or letting their disease define them. I was wrong. Becoming disabled was inevitable and unavoidable for me, and there was nothing I, or anyone else, could have done to prevent it. I wanted to work, but I just couldn't do it anymore.
It has been very hard on us. I rely on my fiancee for everything. I've applied and been denied for disability benefits, but I'm going to apply again. Sometimes we have to go to the food pantries when our budget goes wrong. I am in constant pain, constantly exhausted. I struggle to get dressed and make food. Some days I am so tired that I don't even have the energy for that, so I just don't eat. I was forced to cut my long, beautiful hair, because I was incapable of holding my arms above my head for 15-30 minutes every day and I couldn't deal with the horrible scalp pain during and after brushing it. I don't wear jeans anymore, or anything tight, or anything with seams in the wrong place, because it's just too painful. I can't take showers by myself anymore, only baths. Making the bed and loading the dishwasher have become accomplishments instead of daily chores. I rarely leave the house alone.
I constantly have to deal with people who don't understand. Family members who don't understand that I am not blowing them off when I don't come to dinner. Strangers who don't understand why a seemingly perfectly healthy 23 year old woman needs to use the disabled bathroom stall (so I can use the bars to stand up) or the electric shopping cart or my walking stick (so I don't fall and get hurt, and also to conserve energy). My two year old sister, who doesn't know why "Big Sheeshee" can't run after her or pick her up.
Society equates the young with being healthy, and teaches us that disabled people are mostly paralyzed folks in wheelchairs, and that if you're not a working, productive member of society then you're worthless. It teaches us that pain and disease are bad, horrible things that make your life not worth living. But I think my life is worth living.
There are lots of bad things about living with fibromyalgia and chronic illness. But there are good things, too. I have learned who my real friends are, and that true love is sacrifice and hard work. I have found a huge community full of brilliant, wonderful, disabled people. I have discovered that privilege is intersectional and so is feminism, and that you can learn a lot about a person by how they treat you when they find out you're sick. I learned that I am not disabled by my pain or my fatigue, but by society and it's lack of ramps and resources. I have become clever and resourceful and accepting of my flaws and my challenges. I would not be the person I am today without my illness.
I have bad days. But I have good days, too. And I'm hopeful that someday I will find a treatment that will work for me. I'm not giving up. If you have fibro, don't ever give up. When I started walking this path there was no treatment at all, and now there are 3 FDA-approved medications. It's not much, but it's a start.
If you enjoyed this blog post, comment below with your thoughts about fibromyalgia, share this post on facebook and twitter, and keep checking back for new posts every day!
