Symptoms In More Detail (Part 3) –

Chronic fatigue & chronic pain are also kind of difficult to describe. I’ve suffered with chronic fatigue for as long as I can remember, dating back to when I first started high school. I would always feel tired and achy and struggle to wake up even when I’d had a good night’s sleep. I was the teenager that preferred to nap after school than go to the park on the way home or head into town.

I had glandular fever a few times through high school, and that’s when the chronic fatigue was at it’s peak. I’d sleep for days and still feel exhausted. I’d ache from moving from my bed to the sofa in the lounge. Who’d have thought it could get worse than that?

Now chronic fatigue limits me more than not being able to move my legs properly does. There are no aids you can use to help, no pills you can take to remedy it; same for chronic pain. It’s just there for the majority of the time, and you’ve got to listen to your body and take it easy. You just have to sleep for 16 hours and not punish yourself when you don’t feel rejuvenated when you wake up, then sleep for another 16 hours all over again.

I’ve had a lot of people bring up CBD oil when it comes to chronic fatigue & chronic pain. Personally I have never tried it. I’ve seen posts from people who have in various FND groups on Facebook mostly; some swear by it and some say it didn’t do anything for them. I think it’s down to the individual, like anything. Some things work for some people, and don’t for others. Maybe I’ll give it a try in the future, it’s just a lot of money to spend and not work out when you’re living off benefits, in my opinion anyway.

I like alternative therapies, mindful meditation, reflexology & aromatherapy. All of which I have tried and found helpful. I think it’s a little to do with distraction, getting your mind to focus on something else; but if it works for a short while, who can fault it? Plus, mindful meditation is a useful skill to have anyway. It can help with anxiety and stress as well as pain, but does take practice. Just like everything else in life, it comes down to trial and error – try different things, see what works for you.

Symptoms In More Detail (Part 2) –

Pins & needles is a strange one. I’m sure everyone is familiar with the feeling from laying on an arm too long or sitting in a strange position for any length of time; your limb goes to sleep, and as it comes back, you get the sensation of being pricked by thousands of tiny pins and needles. It’s a sensation I feel all the time in my arms and hands, one I get in my legs and feet when I’ve done too much. It’s not always severe like when the blood is flowing back through your veins, sometimes it takes on the form of a buzzing or vibrating; but it’s always there.

I don’t know whether this is a symptom of chronic pain, chronic fatigue or FND or whether it’s just all linked together. It’s one of those the medical professionals don’t seem too bothered about, because obviously it’s not having a dramatic impact on my health… but at the same time, I feel that sensation all day every day, to the point where it’s now normal or an achievement if I wake up and it’s subsided slightly.

As for managing it, it’s certainly worse when I’m fatigued and done to much, in the sense that it spreads to my legs as well as increases in intensity. But I haven’t found anything yet that makes it go away all together. If and when I do, I’ll be sure to post it all over the internet.

Symptoms In More Detail (Part 1) –

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.