So I went over the symptoms that plague me thanks to FND and NEAD, and decided that today I would start to cover some of them in more detail. The things that affect me the most are functional muscle weakness, pins and needles, non-epileptic attack disorder, chronic fatigue, headaches & migraines, functional dystonia & foggy head.

Functional muscle weakness is always present in my legs. It hasn’t always been that way; it used to only happen after a seizure. Now I can’t pick my legs up properly at all, and when I try, it brings on a non-epileptic seizure. There are also different levels of functional weakness I experience, from every day not being able to pick my legs up (but still able to walk) to not being able to move them or weight bare at all. This can also happen in my arms, though it is rare at the moment as I’m doing my best to manage my symptoms.

It’s quite hard to describe the feeling of functional muscle weakness, but I will do my best. It basically feels like my brain is telling my legs what to do, and they either don’t do it straight away (there’s a delayed response) or they don’t do it at all. They also feel slightly heavy, almost like I’ve got weights on my legs or something. I can walk on carpet kind of okay, hard floors are the best because I tend to drag my left foot a lot (the left is worst than the right) and on hard floors I just glide. When I put shoes on I have to use a crutch or two to get about, and when I am outside on concrete or grass I need to use crutches too. Friction is not my friend. I can’t walk far, as I tire out easily, get quite breathless and it just completely wipes me out for the next few days thanks to chronic fatigue and chronic pain. Because of this, when I know I’m going to need to be out for a while or walk a fair distance, I use my trusty wheelchair Rosie.

When I first had to use a wheelchair, I remember bursting into tears. I was a dancer, so admitting that I couldn’t use my legs properly was a big thing for me; it literally broke my heart. But soon I realised that the wheelchair wasn’t a bad thing or something to be upset about. The wheelchair helped me do the things that my brain and legs wouldn’t let me. I could get out with my family and friends, I could do a food shop on my own. Basically, it gave me some of my independence back.

I had some physio-therapy a couple of years back at a neuro-rehabilitation clinic in an attempt to give me some more movement in my legs, and prevent the bad flare ups of not being able to move them at all that were happening regularly at the time. After a few months I had to stop, as my seizures were stopping me from progressing. Basically I got to the point where I needed to push my body to get results, but my brain pushed back. My physio and I decided that I needed to work on my seizures before I could progress any further with my functional muscle weakness.

Now I’m not doing too bad. I generally know my limits, and when I push it too much, I know how to rest and let my brain and body recover. My seizures are mostly under control through a small dose of Amitriptyline and being able to manage my symptoms better. I’d like to start physio again, but there is one thing that is concerning me:

If I start pushing myself too much, will I end up in a downwards spiral and lose all the progress I’ve made over the last two years?

For now I don’t have an answer for that, but I will be working on the courage to try neuro-physio again. I’m not happy with where I am at the moment, obviously; but at the same time, I know things could be so much worse. I think I just need to feel like I’m on the straight an narrow a bit more, and find the right neuro-physiotherapist to be able to help and support me.

I hope that, if you experience functional muscle weakness you are able to understand where I’m at with it right now; and that if you have never experienced it, I’ve described it well enough for you to have a small inclination as to what it’s like, and the impact it’s has on your life.