No one gets it

[Adhoc2]

Hi all. I've recently joined as I was diagnosed with FND and Chronic Migraines in December. I also have Fibromyalgia. I find it really hard that no one 'gets it' or heard of FND, has anyone found a way through this?

[Fenderbass]

Hi. I have had the same experience. No one understands. I find that reading forums of other fnd sufferers help.

Swimming helps me alot .

Hope you are able to find a way of dealing with it.🤗

[Adhoc2 in reply to Fenderbass]

Thank you Fenderbass. I do get some comfort from forums but the flip side for me is so many stories of struggles and frustration. I sometimes wish I'd been diagnosed with cancer instead. Don't get me wrong, cancer of any sort is horrible and I've seen it 1st hand. What im trying to say is people can relate to cancer & I think they would react differently to that diagnosis. Even by saying FND has some similar symptoms to Parkinsons or MS or Epilepsy doesn't seem to resinate with pretty much all I've told. I only have a small number of friends and family so feel it's just my husband who, as much as he can, understands. Sorry if I've gone negative x

[Fenderbass in reply to Adhoc2]

I totally understand why you feel this way, when I was diagnosed last march it took me about 6 months to come to terms with it. I have a few very good friends who listen to me & I have counselling which also helps, I just take each hour as it comes now as the symptoms can come and go within minutes.

Do you have anything that can take you away from thinking about stuff?

Music soothes me xxx

[Adhoc2 in reply to Fenderbass]

Thanks, I think i still need to grasp the diagnosis, i can relate to so many of the symptoms. I dont think ive helped myself over the years 'cus I have just tried to get on with life, paint the face on etc.. Can't do that so well now. It's hard work being ill! I also like to listen to music or listen back to a radio programme which makes me smile. I suppose any amount of time you can zone out is helpful. Thank you again for your support. You sound like you're finding your way. Take care x

[Lynneporterjack]

Hi. My son has FND, non Epileptic Attack Disorder and I completely understand how you are feeling. I would recommend looking at Facebook groups, FND Hope UK is the best one. They have lots of posts daily with ideas and support, and have meetings in a lot of areas in the UK to meet up with others in the same sort of situation. They also liaise on your behalf with medical professionals who have never heard of FND, which still happens way too much. Good luck! Xxx

[Adhoc2 in reply to Lynneporterjack]

Hi, thank you for your reply. I don't use Facebook. I have read Jon Stones information as suggested by neurologist which is very informative.

[Parrot74]

Hiya

I get how you’re feeling

I used to get migraines but got a migraine piercing and haven’t had one since

It feels very lonely in this FND world and no matter how many times people say to you you aren’t, you still feel it...as time goes on it gets a little easier but trying to stay positive, believe it or not, does help x

[Adhoc2 in reply to Parrot74]

Thank you x

[cgarff]

Hello Adhoc2, I'm so glad you got to this place. I know FND can be so horrible, I hit 11 years last December but you know what, I am actually improving now. I am so grateful. I still have movement issues, non epileptic and epileptic seizures, etc, but nothing to what it was 2 years ago.

I can tell you that I used to get bad migraines when I didn't get enough sleep, which happened quite a bit, but my Neuro put me on Depakote or (divalproex sodium) and I can truly say. I don't remember the last migraine I had! It is used to treat other things, however migraines are one of them. I would check with you doc and ser what they think. Always worth a try! Keep ttying and don't give up.

Cheryl

[Adhoc2 in reply to cgarff]

Thank you Cheryl x