I thought I would do something a bit different for this post and do another post about FND. There really isn’t much out there about FND and a lot of people have never even heard of it before, to be honest neither had I ever heard of it before being diagnosed with it.
There is so much research being done on FND to help learn more about it and get more information out there for people, and even doctors as a lot of doctors don’t know anything or know much about this condition. A lot of people with FND first get diagnosed and treated for MS because it presents itself just like MS.
This is what they first thought I had and I went through some many tests to find out if it was MS or not, but then I had a doctor tell me that I was putting everything on just for attention and that is what a lot of people with FND face. So the specialists are working hard on getting the right information out there, so people are getting the right diagnosis and also are actually being taken seriously!
Anyone can get FND but often when looking back at people who get diagnosed with FND, you may well see they have what are called the risk factors.
These risk factors are: previous illness/pain/surgeries, stressful life events/ changing circumstances, and being Hypermobile. These risk factors are not the direct cause of FND but can put a person more at risk of developing it. Now that doesn’t mean that everyone who has had or has these factors is going to develop FND!
Then you get a minor physical event happen that can trigger the onset of FND e.g. for me I had shaking in my legs after a long and intense dance class. This can then lead your brain to set off what is known as the ‘fight or flight’ mode (when your brain thinks it is in danger), the adrenaline which is released from the body due to the ‘fight or flight’ then intensifies the tremor. The brain is a very clever thing and all of what has already happened is stored and remembered by the brain, and now the FND starts to progress and is controlled by these three things.
Attention: the brain takes over the automatic control we have over things such as walking, so the brains normal processing is interfered with and you lose the ability the do every day normal things like walking. As you don’t get that normal process being sent from the brain, only parts of the signals are being sent and received from the brain.
Expectation: The brain has learnt from previous experiences such as after a long intense dance or exercise class you get this shaking, and getting that ‘fight or flight’ panic mode. So starts to already expect it to happen the next time. So now it starts happening sooner and then when standing, and whenever weight is put through the legs.
Secondary Changes: These are problems you can get further down the line and get you in that viscous cycle, this can make it harder and harder for you to get better. These changes are: reduced concentration/memory, fatigue, aches and pains, low mood & anxiety can occur.
All of this can slowly build up over time with you maybe only getting a few things, but then once your brain gets in that viscous cycle and takes over too much control, that is when it can all fall apart. I had a few things start appear but didn’t think anything of it until one day I lost the ability to walk and even stand! It can be devastating for someone who has FND and even more so before you get that proper diagnosis, as there is so little information about this condition. People just over look you and turn you away just thinking you are another time waster, but if this condition isn’t recognised and treated properly you won’t get any better and just keep going downhill. Some people have been treated for MS or just turned away and none of them get better they get worse and I have meet people who have gone on to develop seizures.
We need to help raise awareness for FND and other conditions like it. We have to remember that all conditions are different and we shouldn’t judge people, there are so many new conditions being found every year. I know exactly what it’s like to be judged and people to look at you and think well there’s nothing wrong with you, get up stop it and get on with it. It's not as easy as that and takes a long time to get back to you again, it takes patient's and support.