Lizzy Oakley's Story

What were the steps leading up to your diagnosis?

Thinking back and knowing what I know now, I've probably had fibromyalgia all my life. My story begins almost 10 years ago.

I had been on a lovely holiday to the Dominican Republic, and throughout the holiday I was fine. However, on the way home I suddenly developed really bad watery stools, to the extent that I could hardly make it to the bathroom. My son had the same, but my two other children were fine. A few weeks passed and it was all back to normal, or so I thought.

Almost two months later I started getting problems with my bladder and I would suffer bout after bout of cystitis, to the point where I would pass clots of blood. I would have all the symptoms of an infection, but when I was tested it was all normal. This went on for nearly three months. One night I felt like I was getting the flu, but then it would go away again. This happened for three nights and I would feel really sleepy with it.

I then started getting loose stools again that were yellow in color and like water. I started to go off my food and had no energy. No matter where I went I had to be close to a bathroom. Finally after three weeks of this the doctor agreed to test my stools and it turned out that I had campylobacter. They asked me where I had been and what I eaten but nothing seemed to make sense.

I explained that I had not really ever got back to normal after being ill back in February when I came back from my holiday, and said that I’d had quite a few bouts of bleeding from my bladder. They told me it is possible for a bug to sit in the body, quite often in the bladder, and then flare up again. I was finally given antibiotics because by this point my joints were hot and swollen and I was aching all over. I could hardly make it out of bed, and I struggled to look after my home and my family. Six months passed and I was still getting the odd bad stomach, but even worse I was so fatigued. I would get vague aching, and I was struggling to do what I had done so easily before.

I was sent to a rheumatologist and in the waiting room I picked up a brochure that had something to do with reactive arthritis and fibromyalgia. When I went in I told the consultant that all the symptoms in the booklet were the same as mine. He dismissed the fibromyalgia and said I had reactive arthritis, and that soon I would pick up and recover. Those words will stay in my head always, because I never did recover – I gradually got worse. And yet, I was made to feel like I was wasting everyone's time, including family members, and made to feel like a hypochondriac.

Over a space of seven years I was tested for everything. I had scans on my bowel, liver, pancreas, breasts, kidneys and bladder as well as x-rays of most of my body. I had cameras put up and down, and everything was normal. My symptoms come on gradually. I developed asthma, interstitial cystitis, IBS, severe migraines and then cluster headaches/trigeminal neuralgia, severe fatigue, aching all over, insomnia, low mood, problems with memory and learning/retaining new things and problems with word finding.

Throughout all this I was made to feel like it was just me, so I joined a gym, changed my diet and I started to feel a bit better. I was going to the gym nearly seven days a week, and had started weight training – I was a very fit looking bodybuilder. But I was finding it more and more difficult to train and needed lots of supplements to keep my energy levels up. I was starting to ache really bad after each session, which then prevented me getting back to the gym for up to two or three days. Finally I was down to one day a week. I never felt so low and so ill. I had to stop going and I was devastated because still there was no real explanation for it.

I then decided to take on a college course, and started my first year studying counseling. I noticed the odd flare up of symptoms; migraines coming thick and fast, and cluster headaches so bad I ended up in the emergency room needing urgent treatment and then a two-month course of steroids. Only three months previous I had been on steroids for a sudden onset of asthma.

I continued my course and passed, and then went on to do another two-year course for a counseling diploma. I noticed that I was picking up every cold that was going. Each one hit me hard and my previous symptoms would worsen also. I spent many a day crying because I started to think I had some kind of life threatening illness!

In the second year of my course I noticed that I couldn't concentrate for long and found anything longer than 15 minutes on the computer doing course work would fatigue me really bad. I couldn't remember what I was being taught and frustration hit – I couldn't get beyond this. It got to the point where I nearly gave it all up. Christmas 2010 came and I was really poorly. I watched my family all enjoying themselves and inside I felt so sad. I was putting on a happy face but I felt so low.

I've been through some tough times, the loss of a child and relationship problems, but this feeling I had seemed to supersede it all. I just couldn't shake this feeling. Christmas came and went and by February I was feeling ill. Every fibro symptom you have ever read hit me all at once, and one morning I woke in such terrible pain and I had such bad fatigue I just couldn't get out of bed. I lay there and cried. I called the doctor and he phoned me back an hour or so later and asked what was wrong.

As I spoke I could hear him looking through my notes and then suddenly he said, “I'm reading a letter sent by the rheumatologist you went to see over seven years ago and it mentions, 'Possible fibromyalgia, see how patient goes'.” All at once a multitude of emotions scurried through my body – upset, anger and relief. Why was I never told? Why was I made to feel like a hypochondriac for seven years? My family and I had gone through thorough hell. I demanded to be seen by a rheumatologist again, and in June 2011 I was formally diagnosed with both fibromyalgia and CFS.

Daft as it seems it was like a huge weight had been lifted, and for a few weeks I felt better. Then the true reality of it all hit me like a massive falling rock. The words from the rheumatologist suddenly became more apparent. “There is not much we can do or give you, it's something you will, in time, learn to live with.”

I sat one day looking at my bike. It was a beautiful summer’s day, yet I felt so low. I climbed on my bike and started to cycle, but I had this sudden thought that I really didn't think I could put up with a life of pain, fatigue and memory loss and everything else that came with fibromyalgia. In that moment I suddenly felt I understood why some people do end their lives.

This feeling wasn't me at all. Had I learnt nothing from my counseling course? A few weeks earlier a very good friend of mine on the same course gave me a number for a counselor. I got off my bike sat on the grass verge. The sun was glorious and it made my aching so much better. I looked up the number and phoned the counselor, whose name was Maggie. As I started to talk she told me that she too suffers with fibromyalgia. To hear these words was such a relief. In that moment I didn't feel alone anymore.

I went to see Maggie for quite a few sessions and soon I was starting to come to terms with my diagnoses and the journey ahead of me.

What lifestyle changes have you needed to make?

I'm still learning to deal with this. I used to be so active and my head still wants to be all of who I once was. However, my body has a very different agenda. Only this weekend I looked into my garden and decided it needed a pre-winter tidy. I'm lying in bed right now in agony. It's so disheartening I could cry. The lifestyle change that needs to be made is understanding the limitations fibromyalgia can have. As with anything, it's coming to terms with it all. I know I can only do small amounts of anything at a time and that I have to learn to say no.

Who has been there for you? How?

Initially my children, especially my daughter Charlotte, who suffers with chronic fatigue syndrome. Two years ago I met Karl who I'm now married to. He has brought so much love and happiness to my children and me. Having someone love you and keep you laughing and talking is fibro therapy in itself.

What accomplishment are you proud of?

I have been a caregiver for over 20 years. I always wanted to run my own business or be able to go to work, but being a caregiver made this incredibly difficult. At one point I was caring for three people – my daughter due to life-changing disabilities from meningitis at 13 months old, my late husband who died from cancer over 2 years ago, and an adopted uncle.

When I met Karl my life changed totally and for the first time in my life I felt I could find work. I had spent over five years training as a counselor in between my caring roles and I had began the process of starting my own counseling private practice, but this was put on hold as I cared for my late husband through his cancer.

In September of 2013 I started my first job working as a support worker in a local drug and alcohol service. It has challenged my management of my fatigue and fibromyalgia, but I love my work there. I currently work for Somerset Drug and Alcohol Service and also run my private practice on a small scale. I work three days but have to rest for 4 days to be able to work. However, I'm proud of what I have achieved. I struggle terribly to do it but it's my work that keeps me going and enjoying my new life with my husband and four children.

What's your advice to someone else living with Fibromyalgia?

Education. I have researched and read so much about fibromyalgia and chronic fatigue. Having a better understanding helps stop some of the worrying moments where you start to think, ‘Maybe the doctors have got this wrong.' On my most painful days I have thought all sorts, and it's only when I have accessed support pages, groups, blogs and information sources have I been reassured.

Is there anything else we should know?

I set up my own local support group in my hometown of Burnham on Sea Somerset in England. I ran the group for over two years. I have now left the group and it is run under a different name. However, I still offer support online from my Facebook page, called Fibromyalgia Somerset, where I originally started out. It's been running now for over three years and I have nearly 700 members from all over the world. I offer support and information on a daily basis.