I can finally share the joy that is my re diagnosis for the ongoing medical issues I have had over the past 15 years. I have spent almost half of my life in chronic pain, being sent from gastroenterologists to gynaecologists and back more times than I care to remember been subjected to every test I can think of to try and pin down what is wrong with me.
I tried to get my repeat pescription for my tramadol only to be refused by my new gp, let’s just say I was less than impressed. I was given a pescription for indigestion (a hernia was found during my last endoscopy) but this is something I barely suffer with so in a huff I told the doctor she could keep her medication and that I wanted another appointment to investigate this problem.
My younger sister is a sister at the RVI hospital in Newcastle so I asked her to accompany me for reassurance and help with getting the seriousness of my condition over to a woman I felt was not taking me seriously.
Anyway, i sat down in the same chair in the same surgery I have been going to for over 5 years since I moved into the area. I was waiting for it and the doctor didn’t fail ‘what are your symptoms’ my whole person automatically went on the defensive. I have fought to have my case heard so many times, I wish I had a pound for every time I have said the words vomiting, nausea and chronic lower abdominal pain I would be a very rich girl!
So I explained the symptoms again, while she typed it into her computer and out of the corner of my eye I could see my sisters head shaking and eyes rolling, she backed up my every word and made it crystal clear the direction my life was heading if nothing was done.
It just so happened that my sister mentioned that people can physically see when I ‘get my pains’, that all colour instantly drains from my face (like I’m not pale enough!) and something changed in the doctors demeanour. She started on her computer and explained that she thinks she knows what it could be.
She has diagnosed me as having abdominal migraines. After reading up on it, I tick every box of symptoms
- Severe Stomach pain that isn’t in one specific spot (non-localized pain)
- Loss of appetite (not as much now as when it all started when I dropped over 5 stone in a matter of months)
- General malaise, overall discomfort, uneasiness
- Often there is no head pain, just the stomach discomfort and pain
- Symptoms completely go away between episodes.
- Lack of energy.
- Pain that lasts 3-72 hours.
Abdominal migraine was overlooked as it is so rare in adults. Approximately 2% of children suffer from and much, much fewer adults. It is often mistaken as IBD, IBS or lactose intolerance.
There are many triggers that lead to an attack such as
- Stress. Both positive and negative stresses can lead to a flare up. I stress a lot and I have always noticed that this is a massive trigger with me.
- Changes in sleeping patterns.
- Fasting or skipping meals.
- Excercise (at least I am safe from this one)
- Certain foods have been identified as triggers. Chocolate, cheese, Citrus fruits, alcohol and foods containing MSG and preserved meats such as hotdogs or sausages.
I can’t tell you the relief I feel at having what feels like the Perfect diagnosis. I have spent my life feeling like my many diagnosis didn’t quite fit but this one really feels like it fits. When I came out of the doctors I felt like I had my life back.
I have been given medication. My medication is what given to treat regular migraines. I have to take 2 as soon as I feel an attack coming on. I have had what I feel would have been 2 attacks and the symptoms all but disappeared within 30 minutes of taking the tablets so fingers crossed this is the answer I have been waiting 15 years for.
I feel like I can plan things which for me has always been difficult as I never know when I will be ill or how bad it will make me. I can see a future which for me is such relief in itself.
I hope my ongoing battle and this blog has been an insight into what it is like being me and as this is such a rare diagnosis I hope maybe someone out there who’s been potentially misdiagnosed can read this and take it further. Your illness isn’t always as it seems never give up the fight, you are stronger than you realise.
Signing off with love and lipstick,