If you have a multitude of severe, unusual symptoms, and the regular treatments aren't assisting, you probably have a good number of questions running through your head.
What if it’s not my neck? What if it's something different? What if it's something that can't be helped with manual therapy? What else could it be?
In some cases, these are the uncomfortable questions that we as physios have had to ask ourselves, as well.
Functional Neurological Disorder is a very rare condition that's diagnosed, but to our belief, is underdiagnosed and highly stigmatized. It's more and more common the more that you look for it. It’s not easy to explain – but we are going to try our best in this article!
To understand FND clearly, you need to understand how your senses work. That is - why do I feel, what I feel?
Let's take Pain for example, because that's something everyone has experienced.
Knowledge about pain is two fold. The first thing that we know about pain is that it's an output of your brain. So basically what happens is that all the input comes in through your eyes, your nose, your skin, your teeth, your tongue, all of the sensory inputs all come in. It's like a big computer in your brain that takes all that input in and tries to make sense of the world: what you perceive, how you live, what your experience is as a person, what your perception is. It jumbles it all up, scrambles it up, and then your output is what you experience: what you see, what you smell, what you touch, what you taste and what you feel. That's the first thing. Pain is an output.
Some other examples of sensory output might be nausea, might be dizziness, might be hot, might be cold, might be shivering, or it might be that tight feeling that you're feeling in your chest when you're feeling anxious or nervous, like the butterflies in the stomach.
Now, the second thing to know about some of these outputs is that they are protective mechanisms
designed to change your behaviour. Pain is a protective mechanism to stop you from doing the activity that's currently hurting. If you're stepping onto a hot road and it's starting to burn the bottom of your foot.. get off that hot road so you don't burn the skin under your foot. Or the pain you feel when putting a finger on a frying pan or pricking a needle into your skin. Those are protective outputs to say, "Look, please stop doing that." Just in case that you might damage your tissue, or you might do some permanent damage. So they are protective mechanisms.
There are also other protective mechanisms like dizziness, nausea, sensitivity to light, sensitivity to sound, fatigue, hunger, thirst. These are all outputs that are telling you to change your behaviour, to do something different. Now, I guess the question is that when you've got things like headache and migraine, the question is what is it actually protecting you from? What is the mechanism, or what is the reason that your brain is trying to protect you?
It’s important to note that majority of the time, it is the neck and head that it is protecting, where basically, your brain is trying to protect against the signals coming from your neck. However, for a small percentage of people – this is not the case, so what else could it be?
It's a question that even the smartest of us continue to grapple with.
We're talking about neurological things here... there are some things that we just don't know yet. The role of say, gut bacteria, for example, or the role of different chemicals, like GABA, CGRP, in the brain aren't fully understood. What are actually the mechanisms of these things?
There are others where the protective instincts by your brain might actually be due to other factors that haven't really strongly been considered yet. That's what this blog is referring to.
It’s this whole other kettle of fish here where the symptoms are extremely severe. There's no rhyme or reason to it. It can make you feel hot or cold. It can make you feel weakness in your arm or your leg. You're losing your speech. You're slurring your words. You're struggling to swallow. There are all these really weird symptoms that you can't seem to make any sense of. This is what are classified as functional neurological disorders - neurological symptoms with no organic cause.
What are Functional Neurological Disorders and how do they work?
Well, basically what it is, is your brain is wound up so much trying to protect you, is that it is pulling up the white flag and it's going, "Whoa, we need to just shut down and do a bit of a restart here." So it can actually present itself in terms of, it almost looks like narcolepsy where you're falling asleep, where you can't stay awake. It could look like an epileptic seizure when you get an attack like this, or it might be uncontrollable tremors in your hand or weakness, or inability to stand up or hold a posture. It can look and present very, very strangely. The baffling thing about this condition is that all of the scans appear clear.
You may have had an MRI scan, because it looks like you've had a stroke or some other catastrophic thing happen, but puzzlingly, it comes out as clear and you're going, "What the hell is going on? What is happening here?" This is one of the things that your brain can actually do when it's under a huge amount of stress and needing "protection". It's where your brain has decided that it needs to protect you from something. It can actually pull up what I call the 'blue screen of death' you'd see on the computer, where it needs a bit of a reboot, it needs a bit of a restart, because it's trying to protect you so hard. There's no real organic or structural cause, and it's looking very confusing.
What we have found is that some cases seem to be related with trauma. Not all the time, but something in your life that has been extremely stressful or has been extremely traumatic, or at the very least your brain has interpreted it as extremely stressful or traumatic. There's quite a history sometimes of childhood trauma, domestic violence, or other awful things have happened.
But other times it can come on insidiously where it's something very small, but your brain has interpreted it as very large, and therefore you get all these symptoms. Now, when you present with all these symptoms, it can kind of look like this cascade of unrelated, really nasty things, where your doctor or professional looks at you and goes, "Well, that can't happen. What's happening with that?"
I've seen patients where they report that their vision is black and white - it's no longer in colour. There have been other patients where they present with this dizziness that's transient, where some days they're completely fine, and then it feels like they are spinning with no rhyme or reason to it. There are others that report that they have these symptoms where it feels like they're disassociated from reality. It feels like they're looking at their body from the outside.
These sorts of functional neurological disorders don't fit neatly into a migraine or headache diagnosis. So, if you've been to a neurologist and they can't quite classify you as a migraine with aura, or a cluster headache or a tension headache, or something under those criteria, then perhaps a functional neurological disorder might be something to consider talking to your GP or to your neurologist about. We do see quite a few come through the clinic because they think that it's actually a migraine condition that they're living with. But as a matter of fact, it's one of these functional neurological disorders, which is actually causing the issues.
What can you do about it?
It's something that needs to be diagnosed by a neurologist. Preferably a neurologist that is trained in looking at these functional neurological disorders. I mentioned that the outset, that often these disorders can be stigmatized because basically, people and say to you, "Well, you've got to be making that up. That can't be happening. You can't be having those symptoms. Those symptoms don't make any sense." But I can tell you, they do make sense because your brain is an amazing thing. It will protect you in any way that it possibly can, if it feels that it has to. So going to a very understanding GP, a very understanding neurologist, and the treatment would consist of a combination of physiotherapy, getting your limbs moving, retraining your brain to getting your function back, perhaps a psychology team or a neuropsychologist might be there to educate you about how your brain works and also try some techniques to rewire and wind that system down from a psychological perspective.
We’re not
saying that it's a mental illness, but that it may be necessary to retrain your brain to start normalizing the input that's coming in. There are specialist teams out there that do treat these functional neurological disorders. In fact, there is a wonderful team here in Brisbane that I refer patients to if it's out of our realm of being able to help, where they get very good results. If you need a link or a referral or a recommendation, please contact us or send a message, because I can send you their way.
I hope that's been helpful. It's a very confusing condition to explain. Certainly the way that the brain works, we're learning all these sorts of things every single day about how the brain can protect, how the brain is able to play tricks on you to really withdraw you from life so that it can protect you. The reality is, is sometimes the brain gets it dead wrong, and it's all about retraining the brain to get you back to doing the things that you need to do.
If there are any questions please contact us
here.