Advice on dealing with symptoms

[wheelshere]

Hi there. This is my first time posting and i have only had a formal diagnosis of FND since February 1st of this year,so i am still learning about this condition. Could i just ask people what symptoms impact them the most and how they try to manage them? I lost my ability to walk from this disorder,as well as my speech. I have learnt to speak again (slowly) and have adapted to life in a wheelchair(not a permanent situation,i hope).

I can cope with many of the symptoms i display,but there are 2 that i really struggle with; Fatigue is one. The other is a strange sensation i get in my legs,like elctricity is pulsating through them(not so much painful,as upsetting and uncomfortable). Any advice would be greaty appreciated and i hope that this message finds you all feeling well

[Ihavewhat]

Hi wheels here,

I was diagnosed with FND in October 2018 after suffering with symptoms off and on for 4 years. It got much worse in October. I have loss of speech at times, fatigue, jerking movements, loss of muscle control and the ability to walk and that wierd and uncomfortable electrical feeling all over. Sometimes my muscles lock up and I get stuck in some crazy position then everything relaxes and I'm like a limp noodle. When I went to the hospital in October, it was the worse I had been. They gave me Ativan which really helped to calm my muscles so I can regain some control. I could not walk far and had to use a wheelchair when I left the house. I could not even go to the bathroom without help.

I am happy to say that I don't need the wheelchair any more and I don't need help in the bathroom! 😀 I do still use a cane when I'm having a difficult day and my muscles don't want to cooperate in my right leg. It will give out when I'm walking. The feeling of being shocked have gotten better also.

I am a Kindergarten teacher and I was out from October to January when I tried to go back. Well that did not go well. My first day back was a full day and I didn't make it through the day and left early due to symptoms. So I tried half days which was better but still very difficult. I went back out at the end of January and have not returned. My students need a teacher that can be there consistently at 💯 percent. Leaving the 2nd time broke my heart!!!!!!!

Some of my triggers that I noticed are loud noises, being tasked with too much activities at once, if I don't get enough sleep and if I get a bad headache that stays around for too long. I can physically do more but I have to give myself a lot of breaks.

I have done physical therapy, cognitive behavioral therapy, and speech therapy. I am done with all except CBT. I still have some very difficult days but I am starting to have more good days. I do have a great neurologist that did not put me in a box and forget about me.

Take care off yourself and stay positive.

[wheelshere in reply to Ihavewhat]

Thank you for your response. I'm glad to hear that you are having more good days I'm sorry that you had to leave your job though But you done so for the right reasons,so you should be proud of that. I think that it can sometimes be a struggle to seemingly "leave behind the life you know". I have had physiotherapy and speech therapy,both of which helped me,up to a point. I am on a waiting list for CBT,so should hopefully start that soon.

I'm very glad to hear that you have a great neurologist too. I hope that each day improves for you.

[shali_queen]

I got diagnosed last year in January. I think the worst part of it was my head tremoring like crazy. And like other common symptoms people would have with their gait, stuttering, tremoring etc. Once it settled down to a manageable level I have been exercising, CBT, naturopathy, and going to see a chiropractor now (so hopefully helps even more). But for me, I noticed any sort of emotional trigger or pain can induce my symptoms lately. So trying to keep those under control and having it decrease slowly, but I am better than what I had. So keep trying is what I’m going to say. Experiment and see what’s best. Decreasing stress, although it’s hard with that condition, is also something to focus on because you don’t want it worse if emotions trigger it b

[shali_queen in reply to shali_queen]

Good Luck and sending positive energies your way!

[cocoferraro]

Hi there,

I was diagnosed 6 years ago and have had plenty of time to get used to it all. My heart goes out to you.

I lost my speech too, but have learned to speak again although I have trouble with long words and sometimes trying to express myself.

I had a strange gait, I walked normally before, but then kept falling over, falling down stairs and falling into bushes along the road side.

I have not learnt to walk properly but use a stick and always go out with some one else to hold onto.

I struggle with fatigue too but just go with the flow-if I lay on the sofa all day then it is ok,

irritable legs is part of it too.

I have had to retire at 52 and luckily have a wonderful husband who can look after me.

I have come to terms with the dissabilities that NFD can impose on me and am so much happier. My doctor (who is briliant) says if you "Get it" then you will feel and cope so much better. Th sypmtoms we have are all caused by the brain saying,"I:ve had enough, and now I am going to do this to you"-don;t get me wrong, the symptoms are real but they are caused by something in your past, or something that has happened to you.

Please try to GO WITH the symptoms, as if you do they become easier, I am sending lots of love to you and know how you feel-stay strong,

LOVEXXXXX