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Maria’s Story

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Symptoms

Speech difficulties (stutter, loss of words)

Dissociative episodes/seizures

Difficulties with temperature regulation

Pain

Nausea and food sensitivities

 

My name is Maria, I am 29 years old, and I have been diagnosed with multisystem functional disorder. I started having functional symptoms as a child, and as I grew up more and more symptoms slowly snuck into my life.

 

How the symptoms started

I have always had issues falling asleep and had trouble keeping warm since I was very little. The pain in my legs were written off as growing pains, but the frequency of how often it hurt went up when I got older, and it spread all over my body. Then I got a severe concussion, and all my headaches were blamed on that.

As I entered puberty my immune defense wasn’t keeping up as well anymore and I got viral infections all the time. I also struggled with stress during my time at university and the exhaustion, brain fog, speech issues and any other weird symptoms were blamed on that.

 

Speech problems

One of the slightly odd types of symptoms I have had is a functional speech disorder. I am normally articulate and fluent in Danish and English. But I might start mumbling, stuttering, messing around with words, having to think for longer before saying something. When I was at my worst, I often said sentences where all the words were right, but the order could be completely wrong. The two languages were freely swapped and many gibberish words came out of my mouth. I also tend to stutter if I am acutely stressed. It was incredibly damaging to my self-image until I began to see that it wasn’t really because I was being stupid, but just because my brain was overloaded.

 

Overload

The usual explanation is that people with functional disorders often have an underlying vulnerability due to genetics or upbringing. Then either a trigger event can occur that pushes you over the edge and drastically worsens your level of functioning, or you can experience a slow worsening of symptoms. Then there will be factors that can perpetuate one’s symptoms so that one does not recover and get better as one normally would. It is an overloaded system that cannot just fix itself again.

But what does it even mean that a system is overloaded? We have a lot of different ways that the body regulates itself. Usually the body will find its way back into balance, but if they have been pushed to the extreme for too long, then they can lose the ability to self-regulate towards the middle.

For me, it was a combination of slow deterioration, and finally a trigger event in the form of a severe respiratory infection, which happened at a very stressful time in my life. It caused all the otherwise annoying symptoms to flare up to such an extent that my level of functioning went down completely.

 

Treatment and recovery

It’s been 2 years since that happened and I have improved a lot since then. I have been through various doctors and have now also received rehab treatment at the Center for Complex Disorders in Frederiksberg.

The basic rule I was taught in rehabilitation of functional disorders is that you should be able to do the same thing every day without worsening of symptoms for 7-14 days. After that you can increase, but not more than 20%, and if you get symptom worsening you have to take a step back.

In my own experience, this order works well for me, but not the 20%. There is such a difference between my good and bad days that limiting myself to what I could on the bad days didn’t work for me. Instead, I train more on the good days and make sure to pay close attention to not going over the limit.

For me, slowing down when I started my rehabilitation made a huge difference. It’s good to notice what’s around you, and take walks where you collect from nature’s bounty, e.g. berries/fruits/mushrooms, can really get the brain away from complicated thinking and back to something that suits the primal human.

 

Trial and error

I found it incredibly difficult to sort through all the advice and different types of treatment, and spent a huge amount of energy having to test much of it on my own body. That’s why I’ve gathered as much information as I could from all my visits to the doctor, the research I’ve read and the experiences I’ve had. If there’s even one person out there who can use some of what I’ve written to get better, it was worth it.

 

Want to know more about rehabilitation from functional symptoms?

Maria's shares her advice in the bodysymptoms guide to recovery.