Living with Fibromyalgia

As I approach the first anniversary of my diagnosis, I feel the need to write this down and perhaps share my story.

I was a troubled child and teenager. My life was very confusing. I had a father with untreated bipolar disorder and a brother and sister who despised me because I’d gone to live with family and they had gone into a children’s home after my mother died when I was 15 months old. My father had been married four times and the matches weren’t great. After my mother, he married someone who was schizophrenic and anorexic. Her mothering can only be described as highly abusive. My first memories consist of her overdosing, force feeding us and locking us in our bedrooms and not even letting us out to go to the toilet.

After that ended I went to live with an aunt and uncle and I had a really good time until I was seven and dad had a go at putting his family back together again. My brother and sister hated me and I became a very lonely and frightened child. My standard response to my father’s rage and my sibling’s unprovoked hatred was to wet my pants, go into my shell and cry myself to sleep. Dad remarried again when I was eight. I became the youngest of seven children. It was awful, they fought constantly, Dad fought with her children, we fought with her children, her kids had evil friends who abused us.

They divorced and I was so relieved to have some space around me again. We sort of went into a treading water phase where we all just didn’t rock the boat. Dad’s rages were still frequent, but I had learnt how to not be the cause of them. I pulled all my feelings deep inside me and made myself a rock. Nothing touched me and I rarely showed my emotions. The only people I felt genuinely close to were my two great aunts, who lived a solid walk from home and where I recovered from every childhood illness, learned to garden, cook and learned about love, family and compassion.

Dad remarried again just as I was starting high school. Life became very different. My new stepmother tried very hard to give me the things she thought I needed, but it was too late I didn’t trust the motives of a stepmother, but I let her be my friend. I had no school friends, but I was very smart at school and good at sport, so I survived high school. At 16 I went to a new school and met a whole lot of other really nice misfits and I started to want to let myself out to play. Not the scared and scarred quite studious and serious me, but the fun me who wanted to live and embrace life with confidence. I had decided it was my decision how the rest of my life went and if I wanted a different life I needed to create it for myself.

I guess I was impatient as alcohol became the thing that helped me express myself. There were lots of parties and lots of very innocent adult supervised fun for a while. Then I left school and there was no more supervision. What happened next changed my life forever.

A girlfriend of mine had moved interstate and I took some leave from my first job to go visit her. We partied very hard, every night. We drank to almost stupification every night for two weeks. I thought I had a great time. I felt liberated that I could have so much fun for so long. I felt like the world was my oyster and all I had to do was decide what I wanted to do to have the amazing life I wanted to have.

I went home and back to my job. On the morning I was meant to return to work I was so sick. Sick like I had never ever been before. Sicker than I remember being, from numerous bouts of childhood pneumonia I was so sick I didn’t know how I was going to get myself to a doctor to find out what was wrong with me. I found the strength to struggle down the stairs and convinced myself that I had just overdone it on my holiday, had a huge hangover and needed to sleep it off and called my boss to say I’d be in the next day. I collapsed on the kitchen floor, when I came to I called my grandmother and asked her to take me to the doctor.

The doctor couldn’t find anything wrong with me. I got sicker. I couldn’t eat and I couldn’t keep water down. Everything made me sick. I lost weight dramatically. Eventually about the fifth attempt to diagnose me with blood tests came back with glandular fever. On diagnosis my doctor told me he couldn’t do anything for me, but if I continued to not be able to keep down water to let him know and he’d pop me into hospital. I went home and cried. I was terrified of being hospitalised and was determined to fix myself. I made myself drink water even though I threw it up and I made myself eat simple foods like soup even though I threw those up. I was at risk of losing my job, so I went back to work where my colleagues got used to me eating my lunch and then running off to throw it up. By a stroke of luck a major airline strike meant business dried up where I worked and my very nice bosses were happy if I came to work, monitored the phone and slept on the couch all day in the meeting room. It was such a weird time. I wasn’t getting better.

So, I became the studious person again and went to libraries and bookshops, trying to find books that might help me. I still couldn’t get beyond soup. Everytime I tried to eat anything of substance I would have a violent reaction to it. When I started to experience swollen lips and tongue I got really scared. Everyone I knew who’d had glandular fever was just really tired for a while. Six months after my drinking binge everything I ate was toxic for me. I didn’t want to be one of those people whose whole life was dominated by what they could or couldn’t put in their mouth.

One day I was walking down a street I walked down every other day and noticed the naturopathic pharmacy. I had never been great at asking for help, but I’d been in the pharmacy before buying essential oils, so I went in and asked to speak to the pharmacist. I told him what I was going through and whether he could recommend a doctor who would be able to help. He recommended a whollistic doctor.

I saw the doctor for three years. He gave me intravenous vitamins initially, analysed what were now severe food sensitivities and he put me on a rotary diet to slowly reintroduce the wide range of foods that my body was regarding as toxic. It took three years, a heap of herbs and supplements and several emergency trips to his rooms to treat severe reactions, but I got back to eating fairly normally.

On that journey I became an avid label reader, learned a lot about herbs, supplements and natural health, which has become a life long interest. Needless to say I gave up alcohol. I did try it though in my mid twenties and got paralytic on a couple of sips. I didn’t drink alcohol again until my late twenties.

I didn’t feel great though. In fact most mornings it took an iron will to get me out of bed. I tired easily and I got sick easily. I especially got sick if I got emotional.

I was also in pain. I had been ignoring the pain. I have quite a large scoliosis in my spine and my parents (thank goodness) had decided not to pursue the surgical option and have Harrington rods straighten my spine. I ignored the pain, because I didn’t want to have the surgery and that was the only option I’d been offered. The pain was everywhere. I avoided high heels, sport and anything physical.

By my early twenties I was in so much pain I was having difficulty walking and my right leg and arm were constantly rigid. I experienced massive swelling in my joints, particularly my knees and elbows. It felt like I was on a slippery slope to a future in a wheelchair. It wasn’t what I wanted. There was weird stuff going on with my body. The blood blank refused my blood because it wasn’t clotting. Small wounds weren’t healing and I spent an embarrassing afternoon in the local hospital’s emergency department with a paper cut that wouldn’t stop bleeding.

I was determined to live the life I wanted. I used my martial arts training to put mind over matter and forced my right leg and arm to work for me. I put myself through university working three part time jobs, I went and lived overseas, I took intense jobs which matched my ambition. I collapsed in a heap every night and every weekend. I felt like I wasn’t living, just waiting to die.

My supersharp brain became dull and I had trouble remembering things. I often couldn’t connect my brain with my mouth. I didn’t want to have a mental illness like my father or sister, I decided I wanted to address the pain.

My doctor referred me to a pain clinic. It was awful. I didn’t fit the new accident victim the clinic catered for. They focused on my scoliosis as the probable cause of my pain. They were happy to prescribe me morphine patches, but I told them I didn’t want to take drugs without knowing what was wrong. They tried to convince me to have surgery even though they weren’t sure if it would change my pain. By a stroke of luck someone who’d been on holidays at the clinic returned just before I walked away. She was brilliant and was the first person to ask me what I wanted. I told her I wanted to try anything that might help me that didn’t involve taking drugs or sticking a scalpel in me. We came up with a list of about twenty treatment options. Some I’d never heard of, but she explained them to me and some of them were things I thought I’d be comfortable trying. Top of the list for me was osteopathy.

After just one treatment I knew I was on a winner. After three years of regular work, my osteopath had unwound all my tight and pinched nerves and I was experiencing a range of movement I hadn’t had for years. But, I was still in pain. Pain that he couldn’t explain.

I continued to see different osteopaths on and off for a couple of years, but it felt like I was just putting oil in a rusty engine without really fixing anything. I stopped going for about seven years. The pain didn’t really get better or worse. It was worse when I overworked, ate poorly or was tired. I was tired all the time.

I was working full time and studying for my MBA part time at night. Every waking minute I was consumed with study. A lot of the time it just felt like my brain wasn’t working, but natural talent and my work experience saved me through every subject. I was probably underperforming in my job. I fell asleep on the train, in the car and napped every lunch time. I felt sick and feverish a lot. I met my husband while studying. He was oblivious to my pain, fatigue and general health. It wasn’t something I discussed with anyone.

I had times when I thought the pain must be just in my head, that the fatigue couldn’t possibly be real, that perhaps I was just going mad. But if it was in my head then surely I could just make it go away. I couldn’t, so I knew it was real. No one would chose to be this way. But I was concerned enough about my mental health to check it out. Slightly depressed when life is challenging, extremely good coping skills, positive outlook, definitely not mentally ill! So, fairly normal.

Early 2007 my marriage was collapsing, my home was in chaos, I had had a few near misses falling asleep while driving, working took every ounce of energy and the future felt very bleak. On a visit to my osteopath I just happened to have extremely swollen joints. He was a bit shocked as it’s something I’d told him about, but he’d never actually seen.

He asked me lots of questions about my general health and whether I’d ever had any concerning results in blood tests. I had but my foggy brain couldn’t recall what they were and I’d never written the results down.

He encouraged me to see my GP and get some blood tests. My conscientious GP ordered so many tests they took 13 vials of blood from me. Only one of the tests was even borderline and he was sure I didn’t have any of the numerous things he’d tested for. I was glad, because I didn’t want to have any of those things anyway. He referred me to a rheumatologist more to confirm there was no reason for concern with all the things he’d tested for. The rheumatologist agreed with him, but asked me lots of questions I wasn’t expecting that didn’t seem like anything to do with my pain. He then examined me, touching tender points and got a big response from me. He was certain I had Fibromyalgia. He referred me to a rehabilitation specialist to assess me for an outpatient fibromyalgia program. The rehab specialist was so lovely and he told me honestly how the story goes for most people, but to watch this space because new developments are happening all the time. He referred me to the program, even though it wasn’t strictly designed for people who’d been in chronic pain for 19 years.

I had that same feeling many people with fibro have. Relief that what I was experiencing had a name. Quickly followed by depression as I was told I would always have it, that if I managed myself well I could expect to see some improvements in about 7 years!! The program gave me some pathways into wellness.

I now see a yoga practitioner, work part time in a non demanding job and work hard on my diet.

I now have so much more understanding about what is happening to my body. I have strategies for dealing with everyday life, but I’m kind to myself when things take a lot longer than I’d like. I have positive friends who encourage me and now my husband knows there’s a reason for how I am, he’s supportive. I chose not to tell my workplace about my fibromyalgia. I chose not to regard myself as disabled. I chose not to completely give up on things I love, like bushwalking, just because I have fibromyalgia. I nourish my spirit and spend time everyday consciously loving my body and embracing my pain.

I take one day at a time, I have lots of things I want to explore to be more well. My goal is to be well enough to try to have children. I have found an excellent nutritionist to address leaky gut and all the rest and I’m interested in Chinese medicine as the mind body connection is very important for me. I still don’t take drugs even though some days I just want a big pill to come and take all the pain away.

My rheumatologist says it’s a pretty fair bet that my childhood and my driven personality and my scoliosis set me up well for a chronic illness and pain, but it was probably having a major illness which put extreme pressure on my liver and immune system that took me the major part of the way to fibromyalgia.

I feel very fortunate that the cause of my fibromyalgia is not a complete mystery like it is with most people. I feel very fortunate that I don’t have a mental illness and that I have people around me who love and support me. There is so much more to life than the success other people would have you reach when just getting out of bed each day is like climbing a mountain, followed by an even bigger one having a shower and getter dressed!!