The road to diagnosing my chest pains and digestive issues

After years of being suffering with relentless chest pains and other digestive symptoms that have largely gone undiagnosed, I’m finally closing in on an answer.

Stomach and digestive issues are quite common in people with fibromyalgia. So it is no surprised that since childhood I’ve been plagued by horrendous chest pains, which doctors attributed to acid reflux. But rarely has medication helped. The only thing that’s ever soothed the pains that leaves me curled up in a ball in the wee hours of the morning is my Ma’s garlic tea.

In later years endoscopies pointed to gastritis or inflammation of the stomach lining. But even when that clears up my ongoing issues remain. I often feel like food is stuck in my chest, I oft regurgitate my food and then there are the pains, which can range anywhere from tenderness in my chest, throbbing pains, sharp stabs or burning sensations. 

I’ve always been a problem eater. When I was young, my mother used to beat me to get me to eat at meal times. A belt or wooden spoon next to my plate of food was not uncommon. It made meal times stressful but I wasn’t a problem eater because I was just being difficult. I was rarely hungry and when I did eat I felt full rather quickly and food caused my tummy great discomfort and sometimes pain. This continued as I grew older.

Frustrated with the lack of help from science or medicine on the cause of the problem I resigned myself to accepting the precarious nature of eating. It might or might not go well. And whatever happened I just needed to know there was garlic somewhere so I could remake my Ma’s life saving garlic tea. 

In 2020 after a traumatic trans nasal endoscopy where a tube that size of my little finger was inserted into my nostril with a camera, down my throat and into my chest, we began a process to figuring out the cause of my worries. My inflammation had cleared up and the consultation had declared before we started that he didn’t think gastritis was the reason. There was a suggestion that the problem might be mechanical if you like. 

What the tests say

I eventually had to face my fear of more nasal tubes, and a slew on ongoing tests followed including breath tests, barium swallow, endoscopies and biopsies, manometry tests, and 96-hour PH monitoring tests which have so far pointed to surprising results.

An overgrowth of bacteria in my small intestines, oesophageal dismotility (meaning that food struggles to travel freely through my oesophagus into my stomach), and a malfunctioning stomach valve which likely needs surgical repair. 

However that sounds I’m actually relieved to be getting answers, finally. More tests to go.  

It’s been a while since I’ve recorded my medical journeys as I’ve been distracted by life but I now remember why I started this blog in the first place. When I was first diagnosed with fibromyalgia there was very little information online on the condition and sharing with the community became the way we learnt and grew from each other while the medical fraternity came to grips with accepting the diagnosis.

During this journey, I’ve been searching for patient accounts particularly on manometry tests after my last traumatic trans nasal endoscopy, where I was told I wouldn’t feel anything but I felt everything and the doctor didn’t stop when I asked him to, despite saying he would. I didn’t find any so I decided to resume sharing these accounts.  

Things I’ve learnt from this anxiety-inducing journey include:

• Ask for sedation if you can be sedated.
• Sedation isn’t permitted for manometry tests but it is helpful to let the doctor know if you’re worried. 
• Go with someone you trust to comfort you and be kind to yourself. 
• If your wishes aren’t respected, make it clear and do complain.
• Do feel free to ask the doctors doing the tests what they’ve observed.
• Don’t give up until you start getting answers.

It’s been rather humbling and validating to be given actual medical reasons for the cause of these difficulties. I’d spent my whole life not understanding why something like mealtimes which should be happy and about sharing, were associated with severe physical punishments. Now I understand I need to be kinder to myself and hopefully one day when all these medical issues are sorted I can enjoy my meals without worrying if it’s going to hurt or have consequences afterwards.

Gentle hugs x