New Here

[SKADIARTEMISISIA]

I got diagnosed a month ago. Does this ever go away?

[MONIREN]

Hope you get some help here. If you focus on managing the symptoms it helps to cope. There are so many variations in symptoms, everyone is different and what works for one might not work for others. There seems to be no help from medical professionals, there is a lot online to help yourself. But we are here for your cheering squad. Take care. Moni

[SKADIARTEMISISIA in reply to MONIREN]

Wow its so tough. Sudden mobility issues. Sudden extreme tinnitus and seeing lights. Can't speak properly or focus. Can't handle sounds or lights. Totally numb. Spasms.. pff.. its like there is no rest or peace or comfort. Bored. Scared. Tired. Lost everything... I just miss everything! I really don't know how to cope at all. It's so exhausting and frightening and lonely... oh wow..... thanks for your reply. Really appreciate it. How is it for you?Will this ever go away do you think?

[MONIREN in reply to SKADIARTEMISISIA]

You see mine started slowly and still progressing after 8yrs. Everyone is different, I don't have the pain that others have. I can't walk straight, after years of vertigo, new physio gave me small neck exercises that have helped. I was on medication for it for years and still suffered. So you do have to work on your symptoms. But don't give up trying. Some here have found help from symptoms similar to yours. Hopefully they can help you. You do need to find your happy place, even mentally. I've never been able to meditate, but still found something that helped. I do hope that things improve, or at least you are able to cope. Take care. Moni

[SKADIARTEMISISIA]

Thanks for your reply. My oh my.. its hard to find a happy place in this. We'll see how it goes. I'm glad I found I'm not totally alone. Thanks foe your reply. I wish for us all this will just heal

[kev60]

Hi and welcome, My FND started in 2018 with an adverse reaction to medication affecting walking, talking and thinking (memory). At the beginning my neurologist ( once diagnosed) told me 60% get back to normal or nearly, I am not one of them and by the end of my time with neurology they told me I probably would not work again. This was hard at first because I liked working and it was a big part of my life ( worked 100+ hrs) but you learn to adapt, I had to learn to walk again which is back to 60-65% normal (I look drunk). Memory (lost a year) and thinking, talking can be problematic, where I used to remember everyone’s birthday, anniversary I just can’t recall things. I now use a lot of post-it notes but often forget them. One month after FND I was diagnosed with COPD (emphysema), GORD and osteoarthritis of the spine also developed pain in three areas ( abdominal, back and chest) abs and chest are medically unknown. It can be frustrating and everyone is different but try to look at what you can do and find things that work for you ( physio, hydro- therapy etc) . It can be scary but know there are a lot of FND sufferers and you will get lots of advice on here just take what works for your situation. Hope you find some answers that help. Good luck. Kevin

[Lady4]

Hi and welcome. You are not alone.

Some do learn to manage symptoms and get back to life, some even fully recover. Its a learning curve and a lot to take in, I am a carer of a 17 year old with CRPS and FND and I have learn't a lot throughout his journey (nearly 3 yrs, previously diagnosed with Osgood Schlatters disease, common in teens).

It sounds like you are dealing with a fair few symptoms.

In our case, I can now pinpoint why he was at risk of FND, and the events that would have played a part. There isn't always an predisposing factor but, and I quote:

"It could be related to hormones, could be related to atmospheric pressure, could be related to the temperature outside, it could be related to whats happening in your life at the time, it could be related to your sleep or the quality of your sleep, if could be related to a recent loss of a loved one or a stressful event.

It could be related to the social pressures a person feels they just develop mentally when they went in Junior High or High School and it turns out they were autistic and they didn't know, but as the social pressures changed, some of these things became more apparent.

Plus it could be related to injury or even medical trauma.

The CNS system becomes overwhelmed and things start to go awry. Acceptance to where you are now is key, and stress and anxiety just hinder recovery measures.

So self compassionate and love is a great start.

[SKADIARTEMISISIA in reply to Lady4]

Thanks for the reply. Yes. All those things happened at once... but this is even worse. Thanks for your reply.

[Lady4 in reply to SKADIARTEMISISIA]

I put the numbness down to the brain cutting off the signal as he was describing the pain at 20/10. The fact we were bringing so much attention to the limb and rating the pain wasn't helping (it was new and naturally alarming).A neuro PT told me to get him to try to stand regularly (prob best with a bed/chair behind you) but if you add a sensory input this could help, eg bare feet on fluffy rug.

One day when he was laid up in bed I was having fun playing with the cat and he was curious, so lowered himself off the bed onto the floor and we continued the roll the ball to the cat and each other, afterwards he got up (forgot the sensations/or lack of sensations in his legs and continued his day as normal.

Another day he was laid up in bed and I had to pop to the office or something and as he suddenly remembered he had his friends PE kit he got up, dressed, and walked part way to school and back (early closure).

So in both those instances he gained autonomy, in the school scenario his goal to get the kit to his friend was greater and took priority, as his symptoms usually stopped after school hours and re-started the next morning (one or the other).

[Shimmyaway]

So sorry to hear of your struggle, so many on here have been there. As for knowing if the symptoms will ever go away, the jury is out, but they will maybe change over time, and can reduce, but will need your conscious input to do so, and what helps and what doesn't is very individual. I don't know how far along the fnd information highway you are, how stuck on the medical hard shoulder and what measures you are currently able to take to help yourself. ..but below are some places where you go to for strategies to help gain more control over your symptoms, and maybe lessen their impact.

Jon Stone's, neurosymptoms.org.uk ..good overview

St George's Hospital ,London, website ..good for managing physical signs (Are you in the UK?)

Reset and Rewire ..book with practical advice ( not just for kids)

Youtube videos for info and exercises to help regulate the nervous system via somatic experiencing exercises, via yoga flows , esp those linked to stress response, deep breathing exercises, and progressive muscle relaxation. Sites I use are from Arielle Schwartz, 'Therapy in a nutshell' 'Beyondpain' ..Body Illumination ..but there are many more.

Physical exercise helps rid you of the body tension, even if its only through shaking parts of your body.. personally I find a focus on spine mobility helps rid me of the tension. My neuro physio advised this and I still do it, 3 years after diagnosis.

As for your triggers, find them out, and face them in as much as you can, in a much 'watered down' version .. so the anxiety gets watered down too .. and then gradually increase the intensity of the trigger ..in my case music, or mobile phone sounds.. to desensitise yourself. FND feeds on anxiety, so starve it if you can...find a time each day to focus on something that engrosses you, That's hard when your life has been turned upside down and you don't know where you stand or where you are going ..but try everything and don't give up ..please. Things can improve.

[HenriettaPoultryfoot]

Hello and Welcome!

As a person new to the FND diagnosis, I imagine you have a plethora of questions and concerns

In my journey, which has been a mere five years, there has no “going away.”

However, my experience has been a bit of a roller coaster ride. There are times of great difficulty, and times of manageable annoyance. Many things seem to happen at random

The first two years were the hardest for me. Symptom after symptom piled on. I did not have a good understanding of what was happening. The third year brought more symptom stabilization. By year four, I began to come to terms with the disorder. Now I accept that I am joined at the hip with FND.

I am in tune with my body and mind. I have learned to recognize my triggers, auras, and recovery from bad spells. For me, deliberate pacing of my activities, embracing daily naps to manage fatigue, and implementing rest days surrounding any major event (birthday parties, out to lunch with friends, etc) so that I may enjoy my social time. I pray often, and have learned to give myself grace. Additionally, I have utilized several therapies, both physical and mental health. If interested, I will go into them in more depth

Skadiartemisisia, this group has been quite helpful to me. I hope you will find it a good resource and outlet in living with FND. Feel free to ask questions, and explain what is happening with your journey.

My mantra is: I am doing my best, and my best is good enough.

Your fellow FND Warrior,

HenriettaPoultryfoot 🐓

[Panther5000]

Everyone has given you good advise. I am someone that once I know the problem I educate myself and find as much info as possible. My journey has been a bit different in that my symptoms have been mild. I have had some of them go away and new ones come up that are similar to those that went away. I have had a hard time with figuring out triggers. My body reacts after the stress or problem goes away. I have been trying to do self care daily. I have identified a few things that cause problems right away and later as well. I have to be careful with strong emotions. Even getting too excited about something can cause me issues. The sooner you can start to address your symptoms and the severity can be an indicator of whether you need to just manage or whether they can be resolved and go away at least for a time. Some can manage and have no symptoms for a long while. We are each different but there is always hope that you can change things and improve them. Neuro PT and finding the right therapist is usually the best course at first to getting some relief. I went to Neuro PT not knowing how they could help me but they have been the best help for me. I actually have found out more about my FND through them. There were things going on that I had no idea about till I started going.

[SKADIARTEMISISIA]

I just need it to be over now. I can't handle it. My vision is messed up. Burning eyes. Buzzing in my ears. Constant after images. Seizures. Or like I randomly get punched in the stomach which winds me and makes double over. Or sometimes like my head is pushed violently back. Cant walk. When I do its just like im spinning around. my arms everywhere. Or falling .. Speech is sometimes gone or slurred very minimal.. Totally confused and disorientated. Endless groundhog day. Can't think. When I do it just triggers me. Migraine, half fainted over 40x yesterday. My family is annoyed at me all the time. They just want me to heal this asap. Fingers arms legs everything just seizing up. Floppy. Sick. Exhausted.. Exhausted of being exhausted. Its like my face is just drooping and my skin is giving up.. flakey and rash from meds or stress or god knows. Totally reliant on my mother and step dad who have no real empathy and keep saying things like your always so negative. You did this to yourself so its uo to you to get out of it. While they still get to live and I'm just baring through every second. I need my life back so I can leave. Pff... this is way too heavy. The grief of it is overwhelming. Lost all connected and well everything. Somehow I just find myself praying or begging even that I wake up in the morning fully healed. This us brutal. Sorry for the rant. I'm new to all if this.. and.. I just need it to stop. I read people having thus fir years.. the thought if that is terrifying. Just think abou tomorrow or thus night wimithout a solution is unbearable... you all seem so calm n kind about it. All your messages help to know I'm not alone.