Understanding FND

[bap942]

Hi, i am new here. I have had problems with shaky legs, tremor, balance and sensory problems for 4 yrs now. Neurologist has just diagnosed me with FND. Been told that i have to accept what is wrong with me but how do you accept something you don't understand? I have explained the the numerous Specialists that the pain in my head is constantly 9-10. Down the left side of my body from head to foot is constant feeling like electrodes running through your body - nobody can touch my left side. Centrelink say that I can be retrained (6 months until I can retire) !!!! So they will not put me on the Disability Pension !!!!!

Surely there is answers eventually (((((((

[pickleweed]

To understand FND better, I recommend that you read or listen to the book "Functional Neurologic Disorders", which is volume 139 of the Handbook of Clinical Neurology.

[malalatete]

Acceptance is always key to moving on and adjusting, so is important whatever the nature of the trauma that has happened. Without acceptance you are still trying to resist something that has already occurred - that puts you under strain mentally and in the case of FND physically too, as you try to push beyond the barriers that your body has set in place. That is not a situation conducive to wellbeing or recovery so yes, acceptance is important.

Understanding less so, actually. I am not sure that understanding the mechanics of FND (not that anyone really does yet) would make it any easier to cope with or live with. You don't need to understand the mechanics of headache, for example to treat the pain in the head and be able to get on with things.

Even when you do understand the mechanics of something it doesn't make it any simpler. As a not entirely random example of that: I can understand that it is a structural weakness in a layer of artery wall, possible as a result of defects in the body's collagen production, or simply a random defect there since birth, that caused a ballooning out, creating an aneurysm, in my case in my brain. I understand the mechanics of how it could burst and its implications: it could kill me any time. Understanding all of that has made no difference. Accepting it and not letting it control who I am and what I do beyond avoiding obvious risks has transformed my life.

Whether still at work or on disability pension you need to get to a point with this where you manage the condition and not the other way round. Living on disability chronically disabled isn't a picnic, especially if you are still fighting your condition. As you have probably already discovered, doctors are as baffled by this as you are and they are generally pretty useless with stuff they don't understand. So you are the expert here. Taking control will improve your outlook. But it will take time.

Take notice of what your body is telling you. Bottom line is it is saying 'stop'. So stop fighting it and llow yourself to convalesce from the trauma that has overloaded you. Begin to remove any unnecessary physical, emotional and mental stresses and allow yourself to focus on resting properly. You will be surprised what constitutes a mental stress - think TV, radio...emotional stress - any situation that results in your shoulders tensing or your heart beating faster, it could be a cross word from a partner...physical stress - any movement, particularly those against which your body is resisting (for me it was walking). Reduce these as far as possible. Use any tactic that comes to mind. Monitor how you go. What really helps? What has the opposite effect? My triggers were prolonged physical activity (which then made any activity difficult or sent the brain into meltdown) or prolonged mental activity (an hour of brain work would reduce the legs to jelly) so I began to do everything in short slots of 20 mins with rest in between. Any busy social situation (meal in a pub, supermarket shopping) had too much input - lights, noise, mental interaction. So I swapped these for online deliveries and takeaways at home with a friend or 2.

Treat the symptoms you can treat - not to hide them but because to do so will ease a stress. Living with constant headache is stressful (I get clusters of migraine, and occipital neuralgia and can be in constant pain for days). So treat it. But alternate your treatments to avoid medication overuse headache perpetuating the problem. Also try natural treatments such as heat and cool pads and sprays and offer alternative ways to ease pain. Listen to your body - it is shouting 'Ow! Ow!' - and respond to it as you would a child: let it be rested, wrapped up warm and comforted. YOU are going to look after and love yourself (because frankly, the medics are not going to do it).

Over time as you implelement your personal care plan you will find that there is a balancing point in terms of what you can be loaded up with. There will be a level you find where if you stay one side of it you can live life with your symptoms a lot less in evidence - either because they have subsided or because medications or treatments have controlled them. But you have to watch and monitor your inputs and outputs very carefully to get there. And you will always be at risk of tipping back over, and you will never be able to take on the sort of load everyone else carries. The sort of load you used to carry. In fact don't be surprised if you can't even cope with half what you used to deal with.

And we are back to acceptance... because you will learn eventually that yes, that is ok. There is no need to be super efficient or super productive all the time. Life today operates at a speed we are not designed for. And for some of us that ends up blowing a fuse. That is the bit that the medics can't see yet, the mechanics of which we can't understand. We can't know if it can be fixed. But we do know that the brain has the best chance of rewiring itself and rerouting its energy if not overloaded. So set yourself a goal to be gentle with yourself. You deserve all the care you can lavish.

[cshubert in reply to malalatete]

I can relate to the need to "understand" before moving to acceptance. I am very much a "why" kind of person. If I can understand the "why" (why is this happening, why do the symptoms manifest this way or that, why has the body malfunctioned), then I can move on to the "what" (what do I do now, what can I change, what can be done/used for treatment). But that's just me personally. I'm not one to just accept an answer blindly without explanation.

I will say, though, because the "why" is SO important to me personally, it took me a great deal longer to reach acceptance than most.

My husband explained FND in a relatable way...

If you have a computer that is struck by lightening, the sudden surge of a massive amount of energy will fry the circuits and they will never function the same way again. But if you feed in 105% (just a slight overload) energy every day, eventually the excess energy will still short circuit the computer. So with FND, some people have one big event or trauma that triggers the overload. Some of us have small, compounding events or traumas that lead to the overload. But at the end of the day, the result is the same. Our 'circuits' (ie-brains) have been overloaded and this has caused a malfunction of the primary circuitry system. It is this malfunction that causes our bodies to behave in the odd ways it does.

Just like with a computer system, you can try to reroute the broken circuits, or even rebuild the main frame...the computer may still work, but it will always have glitches and will never be able to process data the way it did before. If you try to upload too much data, it will trip the system again. In the same way, as we begin to rebuild our lives after FND, we have to be mindful NOT to overload our system and retrip the breaker, so to speak! Figuring out where that breaking point is varies from person to person, but keeping a watchful eye on symptoms and when they occur can help!