Disability

[AvacadoPits]

Is anyone on disability because of FND?

[Van604]

Yes, I was diagnosed with FND in 2018, after being in hospital for 8 weeks. I've been on disability since then. I'm in Canada and it was quite the process - I had to fill out a 9 page form, and the doctor another one and then I had to provide tons of back up material, like test results, hospital records etc. That was for the government disability. Then for my work's disability, it was more of the same, plus I have to give them annual updates.

[AvacadoPits in reply to Van604]

That's what i was afraid of.... the process. I probably can't handle it

[Van604 in reply to AvacadoPits]

I think there are advocates who can help you with things like that. You could try FND Hope

[Lady4]

Or you could try your local Work & Pensions Organisation or do you have anything like a Citizens Advice Bureau in Canada x

[AvacadoPits in reply to Lady4]

I'm in the US

[Lady4 in reply to AvacadoPits]

And do you have any social organisations or such that could help?

[AvacadoPits in reply to Lady4]

I havent looked into anything yet. I want to work part time again and pay some of my medical costs. I see so many people on here whose problems are much worse and i feel guilty to complain.... but it still stinks being homebound, on a walker, unable to drive, work and have motor skill issues... and then there is the inability to eat due to gastro problems. My headache today was debilitating. This is real. And it is scary.

[Hidden]

I was in the same position when I applied for disability it is very daunting but you should still apply for it , I was refused the the first time but I went to welfare rights they were brilliant I got £4,600 back. I'm severely disabled by FND I can hardly put one foot infront of the other when I try to walk my arm and legs fly up in the air, my body freezes when I try to walk as if i'm stuck to the floor I also go round and round like a dog chasing it's tail, I get a lot of attention when i'm out which I hate people have told me that I make them a nervous wreck because they think I'm going to fall.I use crutches but also use a wheelchair. Please apply for disability even though it is a struggle,I felt as though they thought I was lying about my symptoms but I knew I was was'nt so that gave me the strength to fight for disability. Keep in touch with your doctor about all your symptoms so that it's all on your records.GOOD LUCK I HOPE YOUR SUCCESSFUL,DON'T GIVE UP IF YOU GET KNOCKED BACK THE FIRST TIME GET SOMEONE TO HELP YOU TO APPEAL IT.TAKE CARE .

[ChronicJazzHands]

I'm a US Navy veteran and I'm severely disabled from FND. Getting the VA to approve my 100% disability was hell. There is no structure put in place by the US government for the condition of FND. So you have to prove your symptoms are real. I found that having friends, family, and previous co workers write statements describing how your life is hell is the only way to get disability approved in the US. Every first application I've given has been met with denial because of they don't have a code for FND, you're just not disabled right? No.

[AvacadoPits]

After all we don't look Disabled.... until we do.

[Lady4 in reply to AvacadoPits]

And thats the thing with FND and CRPS its not always visible, hence why scans don't pick up spasms unless they are happening at that point in time and the same applies with other symptoms as they are inconsistent and often random and the triggers also are either not predictable or not present.I just think until they have the right multi-team support for sufferers, avoiding stressful situations (where possible), mindfulness, meditation, brain retraining and being kind to yourself is the best way forward and in times of remission just try and live as normal life as possible.

If things get tough and you don't think you are being heard, know that you are not alone and we are all here.

[AvacadoPits in reply to Lady4]

I tried to make a cake (from a box) last night and was so overwhelmed my arm started shaking, I couldn't breathe, I was ready to throw everything in the garbage... I need to help take care of my mom (she doesn't live with us) and thought it would be nice to DO something. My husband had to finish the cake and my mom had to frost it. Feeling helpless in Florida.

[Lady4 in reply to AvacadoPits]

Hi, don't be so hard on yourself and accept help from others (they love you). I am sure the cake was appreciated and tasted lovely

[FND-wife]

We live in the US, and are currently exploring disability, as my husband is no longer able to work. There are attorneys who specialize in this(!) who do not charge up front. Instead, their fee is a portion of the retroactive disability you are awarded - if the gov’t awards permanent disability. Thus, these attorneys will only accept your case if they feel the likelihood is high that disability will be awarded.