New here and Grateful for the Support

[SwahaVai]

Hi friends,

I am new to this community. I'm 35 years old and was recently diagnosed with FND. I spent the last 3 months out of work, trying desperately to figure out what was wrong with me. All of my tests were coming back negative. Three neurologists said it was all in my head. The 4th one finally diagnosed me! I had been tested for everything from lyme disease and heavy metal poisoning, to malnutrition and MS. I have had so many MRIs that I started getting migraines.

Both of my jobs (massage therapist & construction) are physically demanding. And both cause me to flair up. So I have been unable to work for 3 months, and had limited work in the month prior due to a few symptoms showing their faces.

I currently experience tremors (mostly local to my right side and occasionally my voice), numbness in my legs, feet, arms, and hands, severe itching all over my body, muscle spasms and twitching, pain that's either all over or sharp shooting pain in specific areas, I have trouble walking & standing (sometimes I walk like I'm drunk), I can't lift more than a few pounds, brain fog and forgetfulness, and insomnia.

Some of my triggers are: hot showers, walking/standing, any basic physical activity, stress, and excitement (if I'm really happy I flair up). A lot of my symptoms have no known triggers yet. I'm trying to figure them out so I can avoid doing them.

I live alone and don't have a significant other. So I'm making this journey pretty much alone. My neighbors are kind enough to take out my trash But I'm also in danger of losing my home because I am out of work and I don't know what kind of job I could possibly do that would pay my bills. More stress = more symptoms. So I'm pretty scared about this whole ordeal. I may even lose my health insurance (and my doctors) in the new year because I'm not working. (I'm in the U.S. if that's any indication).

I'm trying really hard to stay positive. I do see a psychologist and have been for the last 3 years due to my bipolar disorder. I'm sure the random mental ups and downs don't help my physical ups and downs! I do try to focus on enjoying the fact that I can really only sit around and relax. Which, after working 2-3 jobs for the last 10 years, is a much needed respite. But I still have to find a way to take care of myself since I'm all I got.

Anyway, I joined this support group because I don't want to feel alone in this. I'm sure there are people out there in my similar situation. I'd love to hear from you about how you made it work for you/what kind of jobs are out there for people with FND.

Thank you for taking the time

[Paddoodlz]

Well you are not alone! Can yo get on disabilty -either social assiastance or disabit pension in the US? I am in Canada and managed to get. It is probably not your voice tht has issues but your speech. I lost mine and my job was focused around talking. Speech is a funcitonal problem and it can also mean throat or swallowing issues - which I also have. I am still nt convicned it is brought on by stress as if so everone ould whave it Anyway. The group is here so pose your questions and thoguhts. I have learned to focus on the smallgoals of the day. eg. I was able to make my lunch. I was able to do a word search puzzle. I had a shower.... Try not to focus on what you cant do. We are hear for you

[SwahaVai in reply to Paddoodlz]

Thank you so much for your reply! Getting disability here in the U.S. usually takes a year or two (or more in some cases) to be accepted, with lawyers involved. While I am still trying for it, I can't wait that long for income.

I definitely try to focus on small accomplishments. But I'm still getting used to going from 2 full time jobs, volunteer work, event planning for fun, fostering animals, etc...to basically doing nothing all day. I think the mental stuff is that hardest to work through.

But, one day at a time. I'm not out of a home yet, I can still eat every day. Things are ok

[Paddoodlz in reply to SwahaVai]

That's the spirit!

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Welcome! You’re not alone!!! I recommend looking for a local TBI support group, helped me tremendously!! Welcome!!

[LouBL0u]

Hi

I'm so sorry to hear about your challenges. I got diagnosed with FND in January. I recently completed a three week rehabilitation programme in the UK and All my family think my speech has improved.

Two things really helped me - psychotherapy as oppose to counselling (I'd previously done a lot of counselling) and learning about the, " automatic, attentive and predictive brain." model.

The way I understood this (and I'm just a lay person not a medic!) is that our automatic brains are very full, so our attentive brain kicks in and tries to form an action e.g. walking - but as it's not the automatic brain, we get a VERSION of walking from our attentive brain which breaks the action into process e.g. lift foot move leg place foot. Our predictive brain kicks in and starts predicting this will occur again (which helped me understand my triggers/environmental particularly; coffee shops with lots of people and noise)

I was advised to stop the "funny" walking when I became aware I was doing it, (my own term for my own FND walk) make a swinging of my hips to kick start automatic brain and walk off the swing - this has really helped with my walking. I'm not saying this is a cure, just a tip that has helped me...

FND is not a simple challenge and it manifests in many ways but we are all strong to get up every day!

[AjaStar in reply to LouBL0u]

Please give more tips to kickstart automatic brain thanks