I don’t know what to do-I have an FND diagnosis but nothing after that

[NotASadist]

Let me explain-I was diagnosed less than 2 years ago (don’t know exactly when). I have severe symptoms (especially spinal pain) but am receiving no treatment. I cannot do anything physical (even standing or sitting is often difficult) and my life has been ripped apart. My mom has told me I should try to do normal activities and be physically active. I’ve tried, a lot, and after I’m in searing pain and can’t walk for weeks. Just sitting a looking up at the board in class in extremely uncomfortable. I’m constantly dizzy, in pain, and unable to do everyday activities. I also have functional seizures that I can’t remember. I don’t know what to do anymore.

[kev60]

Hi, sorry to say that seems to be the case for many FND sufferers. I was diagnosed in 2019, 18 months after I had a suspected stroke but then I was discharged from neurology. As there over 200 symptoms medics are still learning about FND . I had never heard of it before but apparently it’s the second most diagnosed in neurology after migraine. I had to learn to walk again I think I am back to 65% normal but need someone with me when out as I still walk into walls and look as if I am drunk. I found this site very useful just ask a question and someone will help. I live in London and there are a few specialist like St George’s and kings but the waiting list a very long . I am now under PPS (persistent physical symptoms) but had to wait two years to get seen. Just do your research, do what you can when you can. Don’t put too much pressure on yourself, I have had times where I had to sleep for 30+ hours to recover. It can seem hard but just do your best. Good luck in the future. Kevin

[Lady4]

Hi

I think brain retraining may help, crazy as it sounds. I found a useful interview on the Migrane Summit 2023 which I went through with my son. Mindfulness and meditation may help too.

Doing little and concentrating on the pain increases the signals to the neuropathways that relate to pain, danger, anxiety etc. Thinking of the symptoms in non charged language, more descriptive like sensations is supposed to reduce the signals from that pathway and strengthen others. Definately worth a listen.

Maybe gradual exercise may help too when your able to, it was suggested to us.

Also with reference to the functional seizures (as scary as they are), usually and not always their are signs before that you or your loved ones can learn to recognise, so you can manage them. I quite often found my son on the floor but I think on reflection he may have got himself all stressed out internally as it happened on several days just before school.

Check out neurosymptoms.org

Amongst the many resources is the comic style resource book:

neurosymptoms.org/en/media/...

If you feel the chair at school is uncomfortable maybe a soft backrest could help, simple as it sounds.

If there isn't any structural damage to your body then thats a positive.

[Brokendeer]

Hi I have motor FND so my version is all about movement, posture and coordination problems, mainly legs.

But, I had a neighbour years ago who every time they looked up got a type of neck pain which caused Hemiplegia symptoms (half stroke) and it took months for them to find out it was just posture and positioning that needed to change - so as not to pinch the neck nerve causing the symptoms and blackouts. This fault did not show on MRI or X-Rays. I assume your MRI's & X-Rays were clear also?

I am guessing as you are at school you have done contact/team sports at some point and may have caused some Spine alignment injury you probably did not know you had at the time (changing normal posture), but as we get older these changed bad body positions can cause pressure on certain nerves and show themselves through symptoms.

Are you having any Neuro-physiotherapy or seen a Muscular-skeletal Therapist? Because they can help with reducing stress on bad joints and that means reducing dizzy, pain symptoms.

Personally, I had some relief with Osteopathy (passive stretching) and Dry Needling (type of Acupuncture). In fact, friends with FND have had great success in full Acupuncture because it tricks the brain out of the pain cycle.

Good luck finding what works for you,

Look for the calm in the Storm!

[Brokendeer]

BTW you might want to check out another website (if you have not already):

fndhope.org/usa/

They have more up to date information, Podcasts, live conferences and a larger base of FND Sufferers, inc. younger people.

Look for the calm in the Storm!