I feel like my life as I knew it is over

[Sara_70]

Hi, my name is Sara and I was diagnosed in 2015 after initially being rushed in to hospital in November 2014 with stroke like symptoms, I have facial drooping with slurred speech like I am drunk, left sided weakness, I have these turns as I call them on a daily basis, they can last minutes, hours, days, I have seen 3 neuro and now been advised to see a neurosphycologist, have physio for weakness and advised to have cbt, I used to be very energetic even with pernicious anemia, worked full time, went out all the time, I am now virtually housebound as I can not walk very far, I tend to lose my balance and my memory is terrible, I just want to feel normal again.

[Ccaldwell]

Hi Sara. I am sorry to learn that you are feeling low right now. I just wanted to let you know that the people on this page understand and are hear to support you in whatever you are going through.

FND is A LOT to adjust to. I too have the stroke-like symptoms sometimes. I have had this and other symptoms since 1983,first being diagnosed with all sorts of other ailments before January when a new Neurologist decided it was FND. I understand your pain and frustration over looking back at the type of person you used to be. It is a perfectly reasonable response to feel grief - and it IS genuine grief - over the life you used to lead, and the way you identified with that energetic person. It is so hard to come to terms with the notion that we are valuable people outside of what we do. We all have worth, ( that we are only minimally aware of) in this world.

I used to be a huge list person. I always had a running To-Do list, even used to categorize my lists! Now I concentrate each day on what I CAN do, or did do. For example, some days getting out of bed, having a shower, and eating breakfast are huge accomplishments. I write that down on my list. I leave it out on the kitchen table so that I can look at it, and think about what it took to get just this much done. I congratulate myself on pushing through to take care of myself. I am grateful that someone else did not have to do it for me.

I have raised three boys and had a full life despite, or maybe because of, FND. I would take the opportunity to do the therapies. If nothing else, it may help you deal with the daily intense emotions that this weird disorder stir up. That in itself is a large help in living a happier life.

[Leesaloo]

Hi Sara, I too wish I was the me before, after nearly 3 years I still haven't come to terms with this awful illness. I go into hospital soon for rehabilitation, I'm hoping to get help with at least accepting this awful illness and. The limitations it puts on our lives. I too cannot walk far and have to use a wheelchair for appointments, I have been too shop if quiet as noise affects me but my social life is non existent. It seems so hard too accept this and just want even a part of my old life back. In nearly 3 years I've not worked, drove, socialised and rarely seen my family. It takes away so much from us on so many levels. The isolation is destroying, loneliness eats away every day. I no longer crawl around our bungalow but still unable to walk anywhere. I totally understand what you are saying. Big hugs 🤗 to all of us.

[shirshir718]

Hi Sara:

I was just diagnosed with FND last week. Two months ago I came down with what I thought was a flu but it was a strange virus because I didn't have sore throat or a cough. Instead I had extreme fatigue and nausea. Then I developed a sore right leg that never went away.

Last week I ended up in the emergency department twice. The first time I had severe weakness where I couldn't walk almost. The second time I thought I was having a heart attack as I was having palpitation, chest pain, slurred speech and my four limbs were almost all paralysed. The hospital neurologist diagnosed me with FND. I was discharged because I recovered in the afternoon except for the weakness.

I'm the same as you, I used to be very energetic and had so much on my plate (maybe a bit too much). Now I move like a snail. Currently I still almost have attacks daily which can last from 2-4 hours or longer. I have intense nausea, general limb weakness, malaise and palpitations as main symptoms. I have to take advantage of the good hours to do all the things, which is mostly grooming myself and organised my doctor appointments. I'm also house bound and doing a little bit of stuff gives me palpitations. My biggest concern now is my anorexia as I don't feel hungry at all. I have to force myself to eat a little bit. I used to love food and cooking.

I've researched that FND has a big psychiatric component to it. So i'm going to see a psychiatrist to talk about my past traumas and problems. I'm lucky to have a supportive team of doctors and friends (who are also doctors).

Are you receiving any psychological support? If not maybe you can try. I also do journaling and meditation. I am improving since the last bad attack but improvement is very very slow but I will just keep going and never loose hope.

All the best to you Sara and everyone else here.

[Hidden in reply to shirshir718]

Hi I had the same symptoms you did when I had it....I was diagnosed a year ago finally after seeing numerous doctors and no one knew what was wrong! My concern also was the extreme weight loss even though I was eating! I am much better now..you have the right idea! You need a good psychiatrist and I see a psych analyst! Psychologist did not help and neither did neurologist..:get on the right medication and the right therapy and it does help you get through this awful nightmare! FND comes from the brain...fix the brain and the body will follow! I still have days where I’m not that energetic but nothing compares to how I was a year ago! I was housebound for a year! Good luck to all! Hope this helps someone out there!

[shirshir718 in reply to Hidden]

Thank you Raemark! I don't know where you live but in Melbourne Australia, there are very few specialists that deal specifically with FND. I have made contact with the psychiatrist and his waiting list is 10 Months long!!!! Anyway I will try to find others and have myself queued up for him anyway.

My current goal is to reduce the number of attacks to maybe once or twice a week so at least my dad can go to work. Currently, I am almost completely reliant on him.

[Hidden in reply to shirshir718]

Hi glad to hear you have an appt with psychiatrist but I’m sorry to hear it’s ten months away...keep searching for others..I’m in the United States in New Jersey..the only person who knew what I had was a psychiatrist thanks to my husband who video taped my tremors and me being unable to walk..I was to three neurologist and had tremors right in front of them and they said we have no idea why your doing that..mine started a year after the sudden death of my brother who I was very close too..that was the trama but it hit me a year later that’s why we did not think it was PSTD like they said I also had with it...also a psycho analyst is the way to go they go into your sub conscious mind where FND stems from...she has helped me so much and I am still learning so much more trama I went through through the years not even knowing it was trama..I just buried all these feelings! I do take libruim only 5mg a day and trintellix at night it has helped me so much and I am able to function alone now..my psychiatrist has now also given me tramadol for the pain half in the morning and half at night.. you just have to find what works for your symptoms so you can live again..I am a stay at home Mom with two children so I need to function hahaha if there is anything I can help you with please reach out...we FND need to stick together..hope you get a sooner appt! Good luck to you and stay strong!

[cgarff in reply to Hidden]

I'm in Utah and having a horrible time finding a psychiatrist or psychologist who know anything about FND that are within my network. And I have been told by the judge for disability I have to have at least 6 to 12 months of it in the next 2 years. My therapist wont work because she doesnt have MD behind her. Aaaahhh!

Cgarff

[Hidden in reply to Hidden]

What were your main symptoms?