What is Functional Neurological Disorder?

Hey everyone,
In today's blog post i'm going to talk about one my conditions called Functional Neurological Disorder.

So what is FND? 

I found myself asking this 24/7. The condition itself is very tricky to understand because in scans such as a general MRI and blood tests, nothing shows up. FND is a problem with the functioning and the central nervous system and how the brain and the body send and receive signals. FND has over 200 symptoms but from the top of my head these are the ones I can remember:

Functional limb weakness, jerks and twitches, slurred or stuttered speech, loin pain hematuria syndrome, numbness or loss of sensation, chronic hyperventilation, fibromyalgia, swallowing problems, nausea, cognitive failure/problems, blackouts, seizures, dissociation,tremors, hyper-sensitivity, chronic pain, chronic fatigue, poor memory/memory loss, sleep problems, temporary paralysis, bowel and bladder over/under activity,walking issues, functional strokes, TJM disorders (jaw function), pelvic pain/heavy periods, atypical chest pain, atypical facial pain, functional dyspepsia, loss of balance, complex regional pain syndrome, visual impairments, facial spasms, dizziness and headaches/migraines.

As I said, if a general MRI or a blood test was performed it would show no abnormalities, however if a functional MRI or a SPEC scan was performed on an FND patient, parts of the parietal lobes of the brain will show as either over active or under active.

So what exactly is going wrong in my body? 
Although professionals are beginning to understand some of the complexities that go wrong with the central nervous system, there are still hundreds of symptoms that don't appear to fit into these boxes. From what we know so far this is what is going wrong:

Weakness, paralysis and movement issues - there is a problem with the way that the brain is sending messages to the body.

Numbness and pain - there is a problem with the way that the brain is receiving messages from the body.

Seizures and blackouts - the brain goes into a trance like state and shuts down, almost like hypnosis.

FND, just like any other illness, has a large spectrum of severity. You may get one or two symptoms or you may get all of them. In a lot of cases they can resolve in a short period of time. However in other cases they can last months, years or even leave you permanently disabled. I have been suffering with FND for around 7 months and during this time i have experienced the vast majority of symptoms most or all of the time.

What causes FND?
This is the million dollar question that no one completely understands. There is thought to be risk factors and there are certainly some very similar causes, however some people just develop it. I personally developed FND after having a severe reaction to a neuropathic pain killer that i was prescribed for my scoliosis back pain.

How is FND treated?
There isn't (yet) a known cure for FND, there are therapies and treatments that you can have to manage or reduce your symptoms. Sometimes this can completely resolve the issues and you can be free of FND for the rest of your life, sometimes it resolves the issues but they can come back later on in life and sometimes it can just make the symptoms a little bit more manageable. Whether or not the treatments work completely depends on each case and the severity of it. Treatments such as neuro-physio therapy, occupational therapy and cognitive behavioural therapy can certainly help.

According to the National Organisation for Rare Diseases and Disorders, FND is thought to occur in 14-22 cases per 100,000 people. I strongly disagree with this statistic because FND is often under-diagnosed or misdiagnosed as it is largely a misunderstood condition. I believe that there are a lot more people who have FND, they just haven't had the right diagnoses yet. In a 14 year follow up study of people with FND, 11% of patients have died as a result and many more are being left permanently disabled. The death rate is similar to that of Anorexia, there is little to no investigation as to why FND patients are dying but due to the nature of some of the symptoms FND can cause other problems within the body so my suspicion is that the FND causes another underlying issue resulting in the increasing of death rates. Don't quote me on that though i'm not a doctor its just my suspicion!

So finally, where am I at with my Functional Neurological Disorder?

So as I said I fell ill January of 2019 after a reaction to medication. The past few months have been very up and down and i'm not doing my best right now but that's not to say that this wont go away with hard work. My main aim is to have a bigger proportion of good days to bad days and with the help around me i'm sure i will achieve that in the future. But for now i am just focusing on getting though each day and acknowledging that i don't have to be perfect every day and the bad days are equally as important. 

*disclaimer* Please do not self diagnose yourself by reading this blog post, many neurological conditions appear similar on the surface so ensure that you go to your GP as early as possible.

Thanks for reading!
Frey x


Comments

  1. Freya, I admire you for opening up about your illness, I'm a good friend of your mum's, I'm sort off in the same boat as you as I have been diagnosed with a very rare disease called Erythromelalgia also known as burning Man syndrome. I got my diagnosis in march and since then my condition has gone crazy mines got very progressive and although I get admitted to Derriford for rest or pain management, they have no clue on how to treat me, I've felt like a show case as every doctor, consultant,nurse,HCA and all the other teams come and see me and analysis due to them never seeing someone with my condition.
    I guess a few of us are allowed to be special lol.
    You take care and I will enjoy reading your journey/blog
    Best wishes Hayley Williams xx

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    Replies
    1. Wow, thank you for opening up about that. It is a scary situation to be in and above anything else it can be so isolating - that feeling that no one else understands what you feel. The reason i set up my blog (and i also have an Instagram page under the same name) was to try and reduce myself feeling so isolated but also to stop others from feeling so alone as well. Sometimes it feels like we are gonna be in school text books in a few years!
      Hope your doing well!
      Frey x

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