new to FND

[Threewhitewesties]

Hi just diagnosed with FND , I was a very independent person , I now rely on my family for support, I feel very angry with myself for not being able to stop this, I feel ashamed likes it’s not real and I have let my family down . Is this a normal reaction?

[Threewhitewesties]

Thank you for your reply , I have been researching all day reading people’s personal experience and the way they are surviving and keeping sane, I have much to learn, once I have given myself time to grieve. My old life I will move forward I am humbled at the more extreme cases of FND than mine. Thank you again it was nice to here from someone who truly understands .

[Momofson]

I hope you’ve had a thorough evaluation before they just tagged you with the FND diagnosis! So many people, like my son, are said to have this and it was only because his doctor did not FIND anything else to blame for his problems. I’m not saying that there is no such thing as FND, but make sure everything else is ruled out first! It turns out that my son has thyroid problems and a likely thyroid cancer which he will be getting surgery for. This is after a year and a half of many doctors not finding anything wrong, so one doctor decided he must have FND.

Now, to your original question. Whatever your illness is, don’t feel guilty over something you have no control over. My son is overwhelmed with grief over him not being able to take care of his family and thinking he was putting such a burden on us. Family is there to help you, I’m glad you have family that does that. The best thing you can do for everyone, including yourself, is to work on getting better. Take time to heal.

The mind is very strong, it can change everything once you realize this. Eat well, exercise... get out and walk (even when you don’t feel like it) meditate! Listen to good uplifting music. If you smoke or drink, STOP. If needed, get the kind of help you need to stop all unhealthy practices. If you’re over weight or have high blood pressure, get back in shape. Read everything you can about restoring your health and also restoring you spiritual health.

Make sure you don’t just take one doctors word for it on this new FND diagnosis. Read about your symptoms and also make sure you get the correct blood tests. If you are having neurological symptoms, You should get the panel of bloodwork showing any antibodies that you might have, including thyroid antibodies that could be causing your problems. Your doctor can send your blood to Mayo to have it checked for all the new antibodies they have discovered that causes illness, cancers and neurological problems. My son was found to have g-Achr antibodies which can cause nervousness symptom disorders. We never knew before that he had this and he’s 45. So much more is known now but not by the mainstream doctors. You have to read everything and be your own advocate.

Have ALL your hormones checked. These are all things they missed on my son for the first year. I hope you have a family member or a very good friend that will go to doctor appointments with you. That’s very important so nothing is missed. Someone that can advocate on your behalf. When your sick, it can be hard to get the best help on your own.

Don’t stop looking for the reasons behind your illness and don’t just let them stick you on depression meds and forget about you! Make sure you get second and third opinions. Do not mention FND to new doctors. Let them tell you what they think it is. Let us know how you are doing.

[Threewhitewesties in reply to Momofson]

Hi thank you for your thoughts, my dr was convinced it was myasthenia gravies , but a neurologist disagreed after all tests came back normal. This was two years ago and I was diagnosed with cfs . Two years down the line my physical symptoms have progressed and I finally went back to the dr and showed her my symptoms which are clearly visible, she said she would send me to see anew neurologist with fresh eyes, this was not the case the neurologist had read his colleges report and just agreed and felt that I needed no more testing. I. sat and thought , do you know what, I will manage my physical problems with family support myself as I am sick of no one listening. I am a strong minded person , who never smoked or drink and I was so very fit,I will not take pills.but will find away through this and move forward, I am sure my symptoms are definitely neurological and have read enough to understand that my symptoms could mimic other illnesses . But like I have read before so many times there is no after care for any of the diagnosis that are named cfs , me , FND and many including myself are left to mange our symptoms without support. Sorry to hear about your son I feel very angry for you. you sound a very strong positive person take care and thank you for your thoughts.

[pickleweed]

It's a normal reaction.

[Threewhitewesties in reply to pickleweed]

Thankyou I am glad I am not alone takecare

[tabey]

hi

First of all take a step back and relax

you did not ask for this and trust me fighting it will only make it worse

FND is a very unpredictable condition

i know where your coming from and i now rely on the people closest to me for help and support it tears me to pieces but i have come to accept i need the help at the moment too ease the pressure on FND

just do what you can when you can

try not to plan things to far ahead your not going to set your self up to fall

by doing this your taking back some control which feels good

i wish you well

tabe

[Threewhitewesties in reply to tabey]

Thankyou for the good advice and take are

[_Boom]

You made me cry with relief..i thought i was going insane with the anger and shame and self loathing..feeling of never being enough and trying to hold on...and i totally agree..once ive relaxed into accepting this...it hasnt gone away ..but putting down those feelings for a while has lightened the definatly load