Nina Bryan-Hewitson started suffering from fibromyalgia, which causes pain all over her body, after becoming a mother. She tells Aasma Day how she was eventually diagnosed after being “bred out” that the pain was due to pregnancy and birth.
“I always thought that chronic pain was something that only affected people as they got older. I had never heard of fibromyalgia, but my father suffered from osteoarthritis, so I knew that pain affected some people severely.
I thought if chronic pain hit younger people, it was the result of something like a car accident that left them seriously injured. I never thought it would be something that would suddenly happen to me, especially at a young age.
I suffered from mental health issues and had borderline personality disorder, depression and anxiety and was on strong antidepressants. I got a new drug and had been taking it for about 12 months and it worked brilliantly.
Everything in my life was great. I worked at a bank and married my husband in 2013. I became pregnant with my daughter Bryanna almost immediately.
A pregnancy counselor immediately took me off my medication without reducing it. My body went into traumatic shock to the point where I was nearly cut. I hallucinated and got cramps. It was horrible.
We now know that the medication I was taking had withdrawal symptoms similar 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 she was born I noticed that I was in a lot of pain and constantly exhausted.
I was cramping from the pain and couldn’t even walk to the kitchen without stopping along the way. Then the pain got much worse and I got severe pain in my knees and some days in my back, or my shoulders or my hands or feet.
The pain was as if I had been in a nest of fire ants and they crawled all over my body and bit me.
There was no relief from sitting or standing and it felt like someone was constantly stabbing me with an ice pick. I was terrified and exhausted by the pain.
I went back and forth to the doctors and told them I was in so much pain all the time, but at first they thought it was just pain after childbirth and the exhaustion of being a new mom.
The pain got worse when my son Lucian was born, as I had a one-year-old and a newborn at the time. There were times when I was in so much pain, it felt like someone was chopping my bones into my hips, back, and knees.
I would cry myself to sleep most nights. I took my son to daycare when he was six months old because I couldn’t handle the pain and exhaustion of taking care of two young children, and it made me feel really guilty.
My husband took them to daycare and I went back to bed crying and getting very depressed about it all.
I was taking so many painkillers that I probably overdosed and easily got through a pack of ibuprofen a day. Even then it barely touched the pain.
Housekeeping started going downhill because I just couldn’t do it. The pain was so exhausting that some days I took the kids to bed and we stayed there all day watching TV because I didn’t have the energy to do anything else.
I was eventually diagnosed with fibromyalgia when my daughter was four — just three years ago. I gathered the strength to think ‘I won’t be fobbed off anymore’ because I knew it wasn’t normal to be in so much pain all the time.
I knew this wasn’t the pain after pregnancy and birth or had to do with being a new mother. I knew this chronic pain had to be caused by something else.
Doctors tried to say it was caused by vitamin D deficiency, but then they said I had chronic fatigue syndrome. But this didn’t explain the pain. I was eventually sent to a rheumatologist and he was diagnosed with fibromyalgia.
He poked me in the chest on either side of my collarbone and I nearly fell to the floor because the pain was so unbearable. 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 about it, it was described as chronic pain that would only get worse as I got older.
I was afraid I would miss my children so much. There is no cure for fibromyalgia and all doctors can do is try to manage the pain.
The trick to getting fibromyalgia under control is if there’s something physical you need to do is to make room on both sides to rest and let your body recover and make sure you don’t overdo it.
But I’m a mother of two young children who are now seven and six and I just can’t make room to rest. Even putting something like a load in the washing machine can wipe me out for hours.
I started to suffer from this when I was 31 and now 38 and it was very hard for me to admit that I needed help. I couldn’t even wash my own hair anymore because I would be unconscious for two days. I ended up going without washing or dressing myself or cleaning the house so that I would have enough energy to take care of my children.
But I finally realized I needed help. I’m lucky because I got a scholarship to get caregivers to come and help me. They help me get out of bed in the morning 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 in the afternoon caregivers come to help me with the housework.
I now have a mobility scooter that was very difficult for me to accept and understand in the beginning. But it allowed me to still pick up my kids from school and pick them up and go to the zoo for the day. I now love my scooter and decorate it for Christmas and Halloween.
I now use both morphine and ibuprofen and that helps enormously with the pain. I also pay for float therapy every two weeks, which makes a difference with the chronic pain.
Living with chronic pain is incredibly difficult and it’s not a visible condition and because it fluctuates people don’t realize how bad it is. The level of pain 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 full lives with them. If that means accepting help, I’m willing to do it.”
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