FND diagnosed 14,Nov..

[Ian2224]

Hi all, after a year or different tests and diagnosis I finally have a name for this mind blowing condition... I have other medical issues that I won’t go into at the moment as this is just an introduction... I had to finish being self employed last November 18 whilst in the throws of refurbishing my home. My legs decided not to function properly, I get constant crawling sensation over my body, difficulty with raising my eyebrows without my eyelids drooping.. as well as all my rheumatoid arthritis pain and fused cervical and lumber spine issues.... I am on a list now for neurological physio..., I use an electric wheelchair and crutches... life has been turned upside down, mentally, physically, emotionally,financially... and what’s the point of going on..

I hope the site will give me encouragement, ideas, and support.... signing off for now Ian ( 59)...ps, if anyone ever says FND is not a disability send them my way...cheers

[1GReenbanks22]

Can't help much Ian as FND has caught up with me. Only 6 months, with new symptoms uninvited that you have to deal with, having very little support from professionals. I won't drag you down too much, and I'm sorry to hear about your demise. There is no cure, but treatment is available. There will be people here I'm sure that can help you, Welcome to the site.

[Lima-B]

Hi, I’m really sorry to hear how sad and hopeless you feel.

I just want to tell you this is not a DISABILITY forever sentence.

Please don’t believe it otherwise it can turn to be. There are many things you can do to make it better even though this kind of moments can suddenly happen again, unfortunately.

Please don’t stick a label on yourself.

In the beginning I struggled to do so but after nearly 3 years, I have learned to start all over again every time.

I must admit every time it happens, I’m not sent back as weak as I felt in the very beginning, it feels like I walk 100 steps, than it happens again and I’m back only 80 steps, then it happens not so bad and I’m back only 60 steps and on and on. I feel better and stronger every day.

Now I know it can happen anytime but even if it could be painful for a while, it will go away again and I’ll be back to my exercises to make these episodes further and further apart as it’s been, I promise you.

Please don’t give up.

[AjaStar in reply to Lima-B]

Can you please share your exercises or tips that have helped you. I’m in a recent relapse. I hate it, just when you think you have a handle on this, it throws a curveball and you are back at the beginning

[Lima-B in reply to AjaStar]

Yes, it does and it feels like we are powerless but believe me, I only noticed after nearly one years exercises the episodes were less intense and my strength were getting better.

It took a while to understand it was me not believing I had achievements.

My body was.

After 2 years I went from no strength at all to a happy, joyful and confident person.

Still fighting but definitely stronger than before!

[Lima-B in reply to AjaStar]

At the beginning I didn’t want to try to exercise outdoors or going to a pilates studio, because I prefer to stay at home. If you’re like me, try to find someone who could help you with on line sessions. I have it 3 x a week with Livia Gariani and she’s been brilliant!

You can find her on Facebook or Instagram - send her a private message and try!

I’m here if you need me again.

[AjaStar in reply to Lima-B]

Can you share your diet?

[Lima-B in reply to AjaStar]

I don’t follow any special diet, just normal food, try to keep healthy by balancing between salads, vegetables, fish once or twice a week... just normal, really.

[Lima-B in reply to AjaStar]

One day at a time.

That’s the only way to cope.

I thought I was fitter than ever on Monday, beating all my Pilates sessions’ challenges, feeling better than ever.

Then, out of the blue, on Thursday it started again: I was feeling that back discomfort/pain and this triggered my legs to be so weak as I was 90 years old. By Friday, during my Pilates, I noticed my legs weren’t receiving my brain messages and I couldn’t not only feeling like they were an old person’s legs but I was actually “seeing my legs” like that.

Went to bed upset and frustrated and even considered to have a Pregabalin tablet (which gives me bad side effects) to help me to sleep without pain. Instead, just took my normal anti depressant / anxiety.

Just woken up feeling better and the pain is gone.

My legs?

It feels ok again.

It seems the more we fight against it the worse you feel and it’s a forever circle.

One day at a time.