just diognosed and help appreciated

[rascalisking]

just got diognosed with fnd at 20 and it is suspected childhood trauma caused it and its only just flared up. currently the symptoms im experiencing would be muscle weakness in my left side, my legs collapsing under me at random, my left side going completly cold and numb as well as tremours and shaking all of which causes me pain. i know alot of people have been discussing how menopause has effected their fnd symptoms but i still seem to get worse flare ups consistanly the week before my period causing me alot of issues when trying to work. i only have just been diognosed and everything is a bit overwhelming for me in trying to figure this out and was wondering if anyone had any advice on coping. 🙂

[ChaosCats]

Hi! I’ve also found that my symptoms get worse before my period and often the week of as well. I often try to distract myself when my symptoms flare up or do something calming. Focusing on the symptoms tends to make it worse so try to focus on something else other than the symptoms even though it’s hard. Breathing exercises can also help sometimes. Heat can also be helpful for dealing with the pain.

[Jellofabulous]

hi there, some great resources are FND Courage which is an online course and community as well as re+active PT and wellness. They have a ton of videos on social media about FND and it’s been a wonderful resource for me.

[Lady4]

Hi there and welcome.

My son was diagnosed with FND June/Nov 22. He suffered from all the symptoms you mentioned above and more so but during school holidays he was mainly symptom free (the current symptoms may have gone a day or two into school holidays but not much longer than that). I believe at these points his nervous system was more balanced.

Try not to get too over whelmed and make sure you take time out "me time"/gentle exercise/mindfulness etc and relax. Think about what you can do.

It sounds like you are experiencing gait issues and what sounds like "drop attacks". My son experienced thigh spasms/numbness (due to chronic pain).

Take a step back (mentally). I think my son's "drop attacks" were due to him being totally overwhelmed and anxious (although he would debate this) and poor interoception (not being able to read his body signs and meet its needs).

A proven techniques for sudden leg weakness is to instantly snap your opposite side fingers, this gives an instant external focus and a sensory input (sound).

The hormonal/chemical imbalance before your cycle are probably causing the symptoms to be more challenging as your body is working harder. This is probably affecting your cortisol level (the stress hormone) - will check.

If thats the case you just need to make some adjustments, create a calmer environment maybe by using sensory aids/technique.

How does it affect your work?/ are there any adjustments your work could make?

Also you said your body tremors is it one limb or the whole one side?

And finally breathe, you are not alone.

[Lady4]

I found this link on google from a former member who asked a similar question too:

healthunlocked.com/fndhope/...

I haven't managed to access as don't want to loose my auto log in connection. Maybe another member can check if its still live and copy and post any useful advice.

[Lady4]

Update I found this info:

The menstrual cycle involves recurrent fluctuations in hormone levels and temperature* via neuroendocrine feedback loops which are negative.

Negative feedback loops are especially helpful to balance systems, because they stop processes once they’ve had enough of an effect.

* This is somewhere where you can intervene, if your feeling hot or flushed have a cooling towel or an ice roller to hand.

[Lady4]

Also found this advise off a professional:

"Many women have different needs throughout the menstrual cycle and this would be specific to your brain and body. but potentially needing MORE sensory supports, more electrolytes, more calories, more compression, etc during particular times. I might experiment and see what you might need more of. "

[kev60]

hi, sorry to hear your problems. I was diagnosed in 2019 it took 18 months and lots of tests to get there and I had to learn to walk again (now 70% normal). I found you have find what you can do and not berate yourself for what you can’t do. Good luck in the future, you will get lots of help on here. Kevin

[Catlady1973]

Hi poor you I have ended up with fnd as well due to trauma I can't believe that trauma can do this this is my 6th year with this and its hell it affects my right side and leg goes into spasm and rigged im now also wearing specs as it affects eyesight have bladder problems im on menopause I've had legs giving way had falls i started with a walking stick now its a walking frame nerves are brick hard and stiff heavy and its a nightmare putting socks and shoes on I've been giving some tips clench fists then strating out fingers and repeat and scrunch up eyebrows then open repeat breathing with hand on chest and deep breathing repeat also do this but do your lips like a horse to release tension and your arms move them up and down passed your ears and repeat then swing your arms this to release tension and its to also help with fnd once I've done it I feel better also re clenched fist once opened give your hands a good shake also put music on and sing loud and meditation and cuddle something and to tell your body that you love it and care for it and to tell it that you understand why its done this because its been overwhelming and this was its way of coping I do that and my body we have had trauma hope this can be of some help