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Functional Neurological Disorder - FND Hope
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FND

Hi I was just diagnosed with FND after having many stroke like symptoms, in and out of the hospital from feb 2016 to August 2016, neurologist all kept telling me they do not know what is wrong with me after giving me test upon test. ( all results come out negative) then comes severe tremors which developed during one of my stays in the hospital. No one could tell me what was wrong. Neurologist left me with no answers and extremely frustrated! I came across one Neurologist who said it was FND but I knew very little about it and didn’t really think this was my problem because she said something happened to me in my childhood which was causing this. I knew that was not the case so I dismissed it as my diagnosis. After a year and a half of getting better and then getting worse again I continued to search for answers. I have developed more symptoms that I am still confused over. Am I having seizures? Because during my leg tremors which happen only when I stand leaves me shaking like I’m having an epileptic attack (not sure what is is) but then I feel exhausted and Spacy. Not much energy to do much. On my good days I over do it and suffer later. This has devastated my life. I am completely rely on my family to help me. I have so many questions and I am afraid what could be next!! Has anyone had any similar symptoms? Or any advise?

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Hi roxy..I'm Chris..my wife has fnd..this past October it has been one year since being diagnosed..know that u are not alone and we are here for u...there are many downs...and there are also gonna be many ups...one of the first things u need to do is fully believe u have fnd..fnd is when your body(mind)converts stress into physical problems...it's like your stress needs to be released and your mind thinks it's helping u by making physical symptoms appear....to better understand it it's like when u get butterflies in your belly...have u ever been so nervous that your belly gets sick and u say i have butterflies...well fnd is like having butterflies but it's times a 1,000....like if u have to give a speech in front of an audience n your belly hurts..well y does it hurt nobody hit u right...nobody pinched u right..no...its your mind and body creating physical symptoms due to a stressful thing going on....so next its important to accept your diagnosis even though it may sound strange to u..whole heartedly believe what the dr is saying that u have fnd and it could totally date back to your childhood and other stressors...next be happy that the doctors ran so many tests and all have all come back negative...that's great!!!!!! U have been given a clean bill of health..you are strong and healthy...u don't have any life threatening issues or any other issues that can't be eventually turned around..i know it's hard but be happy about this..let this news be your positive great news....i also suggest u to read books by dr.sarno(the mind body connection)u could also order some CBT (cognitive behavioral therapy)self help WORKBOOKS and also books on the subject of CBT...i tell u all of this because these are some of the things i used to help my wife...it was the only medicine i had so i gave it too her..constantly...i believe thesethings helped my wife get out of a wheelchair that she had been in for four months...a year ago my wife was in a wheelchair at the university of penn hospital not able to move much(ranked number 9 or 10 in the United States)a year later she has now been hired by thatsame hospital and after18years is leaving her current job n starting over at u penn....it's amazing what a year can do...she couldn't walk n now she's takingthis job just a year later at the same hospital she was stuck in bed at (a very prestige hospital I'll add)I'm so proud of her... i just want u to know that there is light for u too at the end of the tunnel...just keep your head up and tryto do some of the things i suggested...i also suggest u talk to someone u trust or love(maybe a husband or boyfriend..or friend)any feelings u have about the past and present i suggest u talk about to them...have a good cry and get them feelings out..seriously...i would tell my wife lets go upstairs n have a good cry..no lie...i would throw her on my back ...carry her upstairs... n I'd have her talk her feelings often resulting in her crying....one of the first times i did this with her the next day she had had one of her best days ever(relating to symptoms)i saw a change....she has come so farthis past year...i suggest u to talk out your feelings a couple times a week..anyway i hope this helps u..i truly care n want to help u out...i hope thishad helped u....if u have any questions don't hesitate to ask☺....chris

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Hi Chris, thanks so much for the advice. It really helps to know I’m not alone. I’m sorry your wife is dealing with FND as well and I’m so happy she is doing much better. She is very fortunate to have someone like you to support her. Yes I am very happy and fortunate that all of my test have come back negative and that yes I am healthy despite being physically disabled. I will definitely look into the information and books you have posted. My neurologist sugessted going to Kentucky to a treatment center for a week as an option for treatments, do you know anything or have any advice about treatment centers? Also you wrote your wife was in a wheel chair May I ask what her symptoms were? We’re they tremors also? I’m so happy she is now able to work and is out of the wheelchair what an accomplishment! I will give anything a try! I will accept the diagnosis and do all I can to educate myself on this illness with the goal of getting better and getting back to my life!!!

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Hi roxy..sorry I'm late responding back i was away for a coupe days over the holiday....by treatment centers do u mean Physical therapy or psychiatric center or something else???as for her symptoms which she still has some of them but nowhere near what they were before...she couldn't walk and was in the wheelchair for four months.....she could stand on one foot and balance but couldn't walk...she also couldn't raise her feet more than a half an inch off the bed while laying down....severe abdominal pain..headaches...memory loss...a little blurred vision every now and then...she lost her hearing for about only30seconds(just one time never happened Again..hope it never does)slurred speech...can't pronounce words(i have to reteach her how to say them..her last word i had to teach her again was pepperoni..that was like2 or3 weeks ago.....unable to speak several times(no voice or very little voice)(I freaked out but didn't let her notice except the one time...has been deeply locked into like a trance at times(I'm not sure if she's even aware of this one)...left leg is numb and feels like pins and needles...has passed out out of nowhere(she says she's just sleeping but i think it's a pass out...has passed out right after having sex and orgasming(scared the hell out of me she wouldn't wake up even with me shaking her and lightly tapping her cheeks)hyperventilated after orgasming(once again scared me,we have been together for almost22 years so i know what she's like after sex and she never passed out or hyperventilated)...she would stop breathing in the middle of the night(i sat up for months just watching her breathe through the night..i only got 1 to 2 hours of sleep a night bc i was so worried...i never told her she would stop breathing...know what's funny though when i finally did tell her that i haven't slept in months bc i monitor her breathing she stopped doing it..it was like i woke up her mind...she literally stopped breathing every night for months and now that i told her what was happening she all of a sudden stopped....i used to not tell her bc i thought she would stress n do it more...the total opposite happened though..wish i would of told her earlier.....non epileptic seizures(pnes it's called) only while sleeping though....and yes tremors..her tremors started out as her arms flailing around moving uncontrollably one night...then more of her body started flailing around and also trembled some....she sat next to me on the sofa out of control..i was so worried and upset...all i could do was rub her back and hum her a lullaby for four hours until she fell asleep....she stopped shaking and flailing once asleep....this was my breaking point i went into work the next day and had a meltdown..i couldn't stop crying to my supervisor..i had held up pretty good for months but that night broke me...i couldn't take seeing my wife in such distress anymore...when she woke thenext morning she had steady tremors non stop for a week straight(i didn't know how long it was going to last i was so sick to my stomach)it did stop though and then became she only would have tremors and pnes seizures while only sleeping..if i remember any more symptoms I'll let u know...just know even though she still has some symptoms she is like80% better than she was a year ago

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Wow that’s pretty severe sorry sh was going through that but very happy she has improved!

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She improved lots..it seems it takes awhile to improve but she does...I've seen her for a year now take two steps forward then a step back...2forward then one back...2forward one back but she slowly gets better...lets hope her and everyone else here can take steps forward n get better..so how r u doing

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Oh my gosh Chris, you sound just like my husband, two amazing men who have turned your lives upside down to help us out through this FND garbage. I have been dealing with FND for 9 years this week, and want to get my life back so much. I have the jerking in my ands/arms, neck/head/face, legs, flailing of my arms as well, walking has slowly become better this year thank goodness, but can be effected by the cold, my torso/back goes into spasms like dry heaves and or like I have a hula hoop that I am trying to keep up. My hands, arms and feet/toes will curl up and not want to respond until someone can sit and massage them out of the direction they have gone to. I have had times where the spams (like really fast hiccups) that effect my breathing so much that my throat feels as though it is closing up, and I can barely get air through at all, (scares the crap out of my husband and family and me). We did find out that I am not only having the non-epileptic seizures this last march, but Epileptic ones as well that I had never had before in my life that I knew of. My speech was the first to go out of anything though, it started by getting a cold in the first week of Dec 2008, I just sounded hoarse, but it has expanded to being hoarse some days or moments to being inarticulate, to stuttering, to getting a few words out, to not being able to get anything out at all.

Fortunately I have a very patient family and therapist that help work with me on that. I have found many times that when my voice stops completely that more things are about to come, my head starts to feel funny and I just have to be careful. I did find what you said about sex/orgasms being a trigger for your wife interesting as that has been a concern for me as well (married almost 25 years). I have had times where right after the spams will hit so hard that they send me off into seizures, and cause problems with breathing etc.. its horrible. But that helps to know that I am not the only one that has had to deal with issues in that area. Thank you! Its not a topic I have heard anyone talk about on here before, so I appreciate you opening up about that on here.

You are an awesome man in my book for doing so much for your wife like you have. I know I appreciate all my husband has done and continues to do for me. I am not sure what I did to deserve him.

I am so glad that you and your wife have found ways to work on this and that is doing so well. I have hope for the future that I can overcome this.

I am so glad I read your post. Merry Christmas

Cheryl

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Hi Roxie, I was able to go back to Kentucky and meet with Dr. LaFaver and see her program, and was even accepted, but unfortunately my insurance wouldn't help me to go through her program. She is a good doctor, who used to be at NIH, The National Institute of Health in MD. I did a study under her years ago. If you have the opportunity to go and do their "More" program, I would suggest it! It is a busy week filled with several different therapists and types of therapy to try and retrain your brain to work the way it used to before FND occurred in your life. I so wish I could go back and take part of this program myself, after 9 years of dealing with this garbage, I am SO done with it. I want my life back!

Best of luck to you, I hope you can get in

Cheryl

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Thanks so much for that advice I will definitely consider it.

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yes i have had similar symptoms! you are not alone. i have had non-epileptic seizures many times and the stroke like symptoms as well. I've also experienced the tremors. i was diagnosed in April of 2015. i am currently not having any symptoms, but it has been a very long road. this disorder is so difficult to deal with because there is so little information. i had a therapist who wanted me to tell her everything i thought before, after, and during an episode. that was the worst thing i ever did. i became extremely anxious and started to feel like i was doing this to myself or that i was too weak to handle regular everyday thoughts. not everyone has one specific trigger. the thing that has helped me is to journal. Journaling isnt for everyone but it helped me organize my thoughts and see how i progressed. if you ever need someone to talk to, just let me know. i would be more than happy to help you in any way i can :)

- Kayla Boaz

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Thank you so much! May I ask when you have non epileptic seizure do you pass out? I feel like I am having a seizure because Upon standing I start to shake with leg tremors uncontrollably and often times violently and when it is over I feel exhausted and Spacy but never have I passed or blacked out. Is that an epileptic seizure? When I was tested for seizures they came back negative. My symptoms are crazy and uncontrollable .

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i do not pass out during my seizures, but i do feel very out of it. i'm pretty sure all epileptic seizures occur when unconscious, so i would guess yours are non epileptic as well. i went through all the tests too and every time they came back negative, i had conflicting feelings. of course im happy that this disorder isnt going to kill me, but not being given any clear answers on what to do to fix this is unbelievably frustrating. When i first got my disorder, my family had to move the coffee table out of the living room because i would literally roll around the whole floor. my entire body would leave the ground. Do you get any sort of warning or feeling before you have a seizure or tremors? figuring out what i physically felt right before an episode was important in my recovery process.

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O I do not get any warnings it comes on suddenly usually upon standing.

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try and notice little changes your body makes right before. i usually feel like i might have something when i stand. my breathing gets harder and i feel light headed and shaky but now i am able to separate those feelings from my disorder. good luck!

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Hi Roxie, I have had ones like those before, my legs would shake, and it would be hard to stand up, but my whole body would eventually join in. I would never pass out with them, but would feel exhausted, and spacy, my body would not want to respond so quickly afterwards when I have them etc.. However I did a regular EEG, and they said everything is fine, you are just having non-epileptic seizures. But the seizures I was having the most were during the night, and less during the day. So I kept asking my neuro about them, and she suggested doing a 3 day ambulatory vEEG or video EEG because I never passed out, I felt everything going on around me, I could see everything going on around me, my head hurt, my body shaking everything.. We did the test this last March, and in April it came back to her, she reviewed the information, and she was shocked to see that I was not only having non-epileptic seizures, but epileptic ones as well. And I as told by every other doctor before hand with videos that were taken from my phone.. on its just NEADs your fine, its typical with FND. I am now on some medication that has reduced the number of episodes that I have down, They haven't disappeared completely, but it has helped greatly. I wish I could say which ones were which, but I might suggest asking your neuro about them if they continue. Just because they don't see anything at that time doesn't mean it isn't happening. Having an extended period of time helped mine to see I wasn't lying about it.

Hope this helps

Cheryl

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I do journal which does help. I hope you continue to get better and thanks for sharing and for your help. I would love to keep in contact with you you have been very helpful just knowing we have experienced the same things.

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Hi my name is Claire i got diagnosed with fnd fibromgia and fowlers syndrome with many other illnesses these sound like the same symptoms and tremors that i suffer with i totally understand what your going through as its sounds so alike I have seizure to makes me feel very spaced out and exchausted to it horrible .How we all have to suffer this way with not many questions answered by the professional ive tryed alot looking into fnd and what this causes and what alot of people don't understand is because theres nothing found medically wrong with you that these symptoms aren't real .but they are... alot of fnd suffers will agree with this.i also totally get were you come from about how much your lives changes due to fnd especially emotionally mentally and when you used to be able to do everything for urself and look after ourselves and our family's and how now we rely on our families now to help us it makes me feel very guilty .I suffer alot myself and I'm sorry you feel this way to it's very hard having fnd if I can try and answer any questions you may have or advice I am more then willing to try and help

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So sorry you are going through this. And Thanks for responding and for your help.

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