Living with chronic pain: ‘Fibromyalgia felt like someone was hacking my bones away’

Living with chronic pain: ‘Fibromyalgia felt like someone was hacking my bones away’

Nina Bryan-Hewitson began suffering from fibromyalgia, which causes pain all over the body, after becoming a mother. She tells Aasma Day how she was finally diagnosed after being “fobbed off” that the pain was due to pregnancy and birth.

“I always thought chronic pain was something that only affected people as they got older. I had never heard of fibromyalgia, but my dad suffered from osteoarthritis so I knew pain affected some people badly.

I thought that if chronic pain did affect younger people, it was the result of something like a car accident which left them with serious injuries. I never imagined it would be something that would suddenly happen to me, particularly at a young age.

I had been suffering from mental health issues and had borderline personality disorder, depression and anxiety and was on strong anti-depressants. I was put on a new medication and had been on it for about 12 months and it was working brilliantly.

Everything in my life was great. I was working in a bank and I got married to my husband in 2013. I became pregnant with my daughter Bryanna almost immediately.

A pregnancy consultant took me off my medication immediately without reducing it. My body went into traumatic shock to the point where I was almost sectioned. I was hallucinating and having spasms. It was horrendous.

We now know the medication I was on had withdrawal symptoms akin to people coming off heroin. A psychiatrist put me back on the drug while I was pregnant.

My daughter was born perfectly healthy weighing 9lbs 6oz. But soon after her birth, I noticed I was in a lot of pain and constantly exhausted.

I was cramping up with pain and couldn’t even walk to the kitchen without stopping on the way. Then the pain became a lot worse and I would have severe pain in my knees and some days it would be in my back, or my shoulders or my hands or feet.

The pain was like I’d sat in a nest of fire ants and they were crawling all over my body and biting me.

There was no relief from sitting or standing and it felt like someone was constantly stabbing me with an ice pick. I was in complete agony and exhausted by the pain.

I went back and forth to the doctors telling them I was in so much pain all the time, but at first, they thought it was just pain after giving birth and the exhaustion of being a new mum.

The pain became even worse when my son Lucian was born as I then had a one-year-old and a newborn. There were moments where I was in so much pain, it felt like someone was hacking my bones away in my hips, back and knees.

I would cry myself to sleep most nights. I put my son in nursery at six-months-old because I couldn’t cope with the pain and exhaustion of looking after two young children and this made me feel really guilty.

My husband would take them to nursery and I’d go back to bed and cry and was getting very depressed by it all.

I was taking so many painkillers, I was probably overdosing and was easily getting through a packet of ibuprofen a day. Even then, it barely touched the pain.

Housework started going downhill as I just couldn’t do it. The pain was exhausting me to the point where some days, I would bring the children into bed with me and we’d stay there all day watching TV because I didn’t have the energy to do anything else.

I was finally diagnosed with fibromyalgia when my daughter was four – only three years ago. I summoned up the strength to think ‘I’m not being fobbed off any more’ as I knew to be in so much pain all the time wasn’t normal.

I knew this was not the pain after pregnancy and birth or to do with being a new mum. I knew this chronic pain must be caused by something else.

Doctors tried to say it was caused by vitamin D deficiency, then they said I had chronic fatigue syndrome. But this did not explain the pain. Eventually, I was sent to a rheumatologist and he diagnosed me with fibromyalgia.

He poked me in my chest on either side of my collar bone and I almost dropped to the ground as the pain was so excruciating. He told me this was one of the trigger areas of fibromyalgia.

I was devastated by the diagnosis and to me, it felt like a death sentence. When I read up on it, it was described as chronic pain that would only get worse as I got older.

I feared I was going to miss out on so much with my children. There is no cure for fibromyalgia and all doctors can do is try to manage the pain.

The trick to controlling fibromyalgia is if there is something physical you have to do, to make space either side to rest and let your body recover and make sure you don’t overdo it.

But I am a mum to two young children who are now seven and six and I simply can’t make space to rest. Even something like putting a load in the washing machine can wipe me out for hours.

I began suffering from this when I was 31 and am now 38 and it was very hard for me to admit I needed help. I couldn’t even wash my own hair any more as it would knock me out for two days. I ended up going without washing myself or getting dressed or cleaning the house just so I would have enough energy to look after my children.

But I finally realised I needed help. I am lucky because I managed to get a grant to get carers to come in and help me. They help me get out of bed in the mornings and without them, it can take me an hour to get out of bed. They do things like help me get dressed and wash my hair and then in the afternoon, carers come and help me with housework.

I now have a mobility scooter which was extremely hard for me to accept and get my head around at first. But it allowed me to still take and collect my children from school and go on days out to the zoo. I now love my mobility scooter and decorate it at Christmas and Halloween.

I am now on morphine as well as ibuprofen and that is helping with the pain a lot. I also pay for floatation therapy every two weeks, which makes a difference with the chronic pain.

Living with chronic pain is incredibly hard and it is not a visible condition and because it fluctuates – people don’t realise how bad it is. The pain level I have on a daily basis would probably send most people to the hospital.

Despite having chronic pain, I am determined to do as much as I can with my children and live a full life with them. If that means accepting help, then I am willing to do that.”

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