Hi

[Jazymay]

Hello. I have just signed up here.

I was diagnosed with fnd about 4 or 5 weeks ago on a Neuro ward where i had "lost control" of my legs. When I tried to walk my legs were so wobbly and jerky that it was impossible.

I got better every day and had physio every day for 2 weeks, when I was back to normal. I have been back at work for 1 week, and the wobbles have been coming and going again. Today they were so bad I had to use a stick and I can hardly walk with the stick now it's the end if the day.

I am struggling with accepting not knowing what I will be each day, week, month. I am not sure how to manage the measly 9 hours per week that I work as a support worker.

I suppose it's just wait and see. It's frustrating but I have to be patient.

Anyway, That's me.

Jazzymay.

[bobbybobb]

The symptoms are unpredictable. It's difficult to know how long they will last as well. It is a complex disorder.

[Mic67]

Are you in the UK? Do you know you can get help with your rent if you're on a low wage?

[Hidden]

I definitely know how you feel about never knowing what each week, month, or even day will bring. For me, that’s probably one of the hardest parts about having FND. It sounds like you’re putting in the work and you should be really proud of yourself! It’s not easy, that’s for sure. Wishing you the best!

[Jazymay]

Thanks everyone. No I am in Australia. The medical system is excellent in what they know about, but when it's something they don't know about, it's like everywhere else. You get odd professionals here and there with an interest in the condition, but there is no formal treatment that I have seen ( so far), except for a hospital in Brisbane who had to stop taking referrals to get through their 2 year waiting list!

I think in time, it will be treated well here, it's about education.

[bobbybobb in reply to Jazymay]

It's pretty much the same here in the UK. not enough resources or education available for the condition.

[Leesaloo]

Hi, if your in pain and struggling it means you’ve overdone it but it could be your working too many hours at a time, is there anyway you could do less hours a day but stretch them out over a week it could be worth looking into. I worked for 20 years as a support worker with dementia, challenging behaviour, learning difficulties etc, very varied and all were rewarding, you get so much back. Now I need support but unfortunately do not qualify for it. Good luck to you whatever you decide 😊

[Justdrea81]

I was diagnosed in May and my symptoms have improved significantly. But I still get bouts like that, especially when I overdue it, am sick, or very upset. It's soo frustrating. Have you had your vitamin levels checked? It turns out for me that I have a B12 and severe vitamin D deficiency secondary to malabsorption from Celiac. I didn't even know my Vitamin D was low until a month ago - and it was almost non-existent. My neurologist is really good at treating my migraines, and he did find the B12 deficiency as well. But he kinda wrote my off with the other neuro symptoms, because my B12 wasn't "low enough" to cause those symptoms I was experiencing. When I went to see him this last time he told me kinda sheepishly that a low Vitamin D can cause muscle weakness. I'm feeling much better, now that my vitamin levels are getting closer to what they should be.