Adjusting to life with fibromyalgia

By Joyce Rubotham

Fibromyalgia. It was a difficult diagnosis to accept. Doctors thought initially that I had an unusual form of arthritis and I could get my head around that. Arthritis explains itself, the biology of that disease is known, it has a cause and a treatment.

Coming from a scientific background I found Fibromyalgia too mysterious, a thing that other people got, definitely not me. Did I think that I was too good for fibromyalgia? Maybe. I was an illness-snob.

Consultant Dr Maurice Barry, my rheumatologist was kind. He could see that I was struggling with this diagnosis. “People manage their fibromyalgia and can lead healthy lives. It’s not a degenerative disease.”  I couldn’t see the silver lining that day.

My daughter was only six months old when I first got sick. A viral infection seemed to be the trigger. An unknown virus, which my GP told me would go over in a week or so.

My joints just froze. It was painful to straighten my fingers, my knuckles throbbed in pain. I remember sitting on the toilet and not being able to actually use my fingers to take off some toilet paper from the roll.

I moved back to my parent’s house with my daughter so they could take care of both of us. I cried when I was unable to pick up my baby and had to stop breastfeeding. I couldn’t walk up the stairs without extreme pain. The pain in my knees and lower back caused me to limp like an old woman.

After a week on a cocktail of medicines and painkillers I was a bit better and moved back home to my son and husband. I was still sick but my joins had loosened and the pain was easing. It looked like I was on the road to recovery and I hoped to put the episode behind me. I was still very fatigued.

Six months later I had not fully recovered when my maternity leave came to an end. I still had a dull ache in many of my joints. But I was eager to get back to work, I loved my job.

Working full time and taking care of the needs of two young children (one and four years) was tough. My son suffered with chronic ear infections, my daughter had very bad asthma and regularly couldn’t breathe properly at night. I was up every single night.

Many working days were lost bringing my children to doctors or taking care of them because they were too sick to go to crèche. I worked on the weekends to make up for lost time during the week.

I was over-doing it and abusing my body in the process, I ignored the creeping pain coming back into my joints.

Four months into this situation I crashed and burned. I was crippled again with agonising pain, couldn’t walk properly, couldn’t use my fingers. I needed my hands. Working in a laboratory doing experiments I had to have nimble hands.

I took a week off work to get better again. But this time it took a lot longer. Weeks turned to months.

Thus began the journey that led me to the clinic of Dr Maurice Barry, the rheumatologist who diagnosed fibromyalgia. When every other possibility has been eliminated, that’s when you have fibromyalgia. That’s a lot of blood tests, X-rays and MRI’s.

I was lucky in that I could take paid sick leave and so afford to keep my two children in the crèche while I recovered. For three whole months I was taking Tradol, a morphine type drug. Months of my life were lost to an opioid-induced haze. If you met me during that time, I apologise, I really was out of it and can hardly remember.

Aside from pain killers, a first line treatment for people with fibromyalgia is serotonin re-uptake inhibitors – anti-depressants basically.

I struggled with the idea of taking mind-altering drugs. I really felt that the doctors were telling me it was all in my head. I argued with the doctors, “I am not depressed”.

I held off for a while, but I needed to get better, it was over a year since I first got sick. My children were now affected by seeing their mother limp around the house and unable to do basic tasks without help.

Cymbalta was the first anti-depressant I tried. I was so drowsy it felt like my body was made from lead. I could hardly raise my head from the pillow. I think I slept for the entire five days I was on that drug.

Next one was Lustral, a very low dose. My doctor urged me to give it a few weeks. The first thing I noticed was an improvement in my sleep pattern. After years of broken sleep while parenting two sick children my sleep pattern was disturbed.

Thanks to this medication I began to sleep deeper and unless a sick child needed me, I didn’t wake. When I was woken I was able to go back asleep immediately.

Disturbed sleep patterns are very common in fibromyalgia patients and are associated with increased pain levels. This was definitely true in my case. I began to notice that getting good quality rest and sleep helped me to manage my pain.

Recovery didn’t happen quickly, for two years I never left the house without pain-killers, never. Every now and then I’d recognise the beginning of a relapse. I had to get good at listening to my body. An important skill I lacked in the past.

I started doing gentle exercise, Pilates, yoga. This helped increase the flexibility in my joints and get some strength back into my muscles. I had gained a lot of weight from the anti-depressants and lack of movement. Regular exercise was a huge step in my recovery.

I was getting better and never once dreamt of NOT going back to work. Scientific research was my dream career; since I was ten years old. I’d spent eight years at university to become a doctor of molecular biology.

When my three-year contract at work was not renewed I struggled with the new life of being a full-time mother. It was a huge adjustment.

But after everything that we had gone through my children needed a full time mother. They were still sick a lot and jumping back on the career ladder was not the right thing for me or them.

The journey from sickness to health is amazing. It actually feels like being reborn. You don’t take things for granted anymore, running up the stairs, cutting up food without pain; simple pleasures.

Giving up my scientific career allowed me to explore more creative skills; writing, novelty cake making, face-painting, gardening, bird-watching. Things I just never allowed the time for before.

I love being at home now, I love the school-runs, the homework, the play dates. Being so involved in my children’s lives is a privilege that I might have denied myself and them if weren’t for fibromyalgia.

With the benefit of hindsight, I think of fibromyalgia as an SOS signal from my body, sent to alert me to the fact that I needed to change and improve my life.