This is a long story, and I apologize in advance for any, bitter angry undertones. I'll skip all of the grief I've had in life and the hard times that I've experienced. I'll try to keep it to the medical issues. It will feel good to tell a part of my story, arguably the hardest I've been through.***Trigger Warning: suicide/ideations/self harm****
I moved back to my home after winning a long-fought custody battle out of state (by myself) and bouncing around a couple different places. I've always struggled with anxiety and depression since I was a teenager, and have been on a variety of medications to try and cope. I can't honestly say any of the anti-depressants made much difference. I definitely see positive changes when taking Clonozepam and the like, but I am never permitted by my doctors to take them regularly. I also believe that I now suffer from ADHD- but can't afford to seek a formal diagnosis or medication. Now, to the story.
I starting dating someone I went to high-school with after moving home, and was working with my mother. I stayed home with my child who was less than 3 at the time for some time, then began working for my mother while living in her house. I have always struggled with codependency in relationships and went to spend every moment I could with him over night and during the day when possible. This combined with difficulties working with my mother and not having my own space, I was "kicked out" and only my child was allowed to stay there. I quickly found an affordable, nice place to live with my boyfriend and child. That relationship slowly became more toxic. A couple years into the relationship, there was a suicide in his family that hit us hard. I was planning to go back to school, but this crumbled when dealing with the aftermath of the death. Around this time, I started experiencing intermittent leg weakness. I tried to clean with my mother during the week while working my job in veterinary medicine 12-15 hours a day on the weekends. My mother watched my child on the weekends until it became too much for her, and this paired with my health issues caused me to leave that job and begin working odd jobs during regular hours. I lost all of them due to the inability to meet the physical demands and the overwhelming stress of my relationship. I was on and off of different birth controls and depression medications at the time. I felt alone, and sad. My family and doctors did not believe my symptoms and accused me of faking. I had many trips to the ER and was treated incorrectly for everything from anaphylaxis, stroke, mania, psychiatric breakdown, malingering, and more. Test results were all coming back normal, except one that tested my bladder's ability to work correctly, but I was getting worse. I found a job in the Veterinary field that was patient with me even on the worst days, and I always showed up and made the 35 minute drive at 6:00 am just to be sent home half of the time. I ended up going to the hospital and being admitted, where I was diagnosed with Functional Nuerological Disorder. I was essentially paralyzed from the waist down and tried occupation and physical therapy to improve, but it only made things worse. Slowly I was able to regain the ability to walk and do tasks, but struggled every day to do even simple things.
Then I was put on Cymbalta. The reasoning was it would help with my depression as well as my neuropathy and other symptoms. I slowly began to get more and more depressed. My dose was increased from the minimum to the maximum dose in just 7 months. Things only got worse. My boyfriend would make fun of my symptoms and ignore me when I was having "seizures" and talked negatively about me to everyone. We argued all the time. He did not contribute or help with any household tasks and I frequently had to pick up his half of the bills. My child, now 6, was the one bright light in my life. We did everything together, but I always felt that I wasn't able to be the mother to her that she deserved. One day when I was alone, I spiraled into a manic episode and felt like there was no way out. Long story short, I took all of my Cymbalta pills and wrote letters to family apologizing for being a burden and letting them know I loved them but could not go on. I didn't feel like myself, at all. I tried to call 2 people for help, but neither answered. So I waited until my boyfriend brought my child home from school. I told him what I did, and he was angry. We went to load everyone in the car to go the hospital, but I lost control of my legs and couldn't get down the stairs. I laid down outside and asked him to put my child to bed and call the ambulance. I slowly got worse and lost my ability to speak, which was a common FND symptom. However, the EMTs who took me the hospital did not believe me. Eventually they did. I was given charcoal and was very sick to my stomach but overall had no terrible things happen. That was until I was told I was being involuntarily committed to the mental hospital. My boyfriend didn't want the responsibility of taking care of my child, so she went to my mom's. He never wanted much to do with her, unfortunately. I had my phone taken away and was beside myself. I knew that despite my child's father being a drug addict, him and his family would try to take my child- for a second time. I waited and waited in the mental hospital, stuck in a wheelchair and unable to walk due to the stress and FND. At this point I absolutely knew the Cymbalta was to blame and told them I wasn't taking it anymore and to put me on something else. I don't remember much about the withdrawals, but I knew the suicidal ideation was due to the medication, and the therapist agreed. I had a sort of pleasant experience at the hospital, until I got the call that my child had been taken from school and a emergency temporary court order filed to remove her due to my mental and physical instability. They lied on the order (as usual) and it was due to be heard within 2 weeks.
When I got home, I was served papers by police in the pouring rain and told officially that my daughter was gone 3 hours away. I immediately broke up with my boyfriend. I told him to leave and never come back, and that I had already lost every thing so might as well be alone. My job let me stay and was very supportive. My symptoms were still bad. Then, almost immediately, COVID hit. Court was pushed back and continued over and over, and I was forced to comply with the supervised visits 3 hours away from the emergency order. They did all they could to keep me from my child, and it was difficult to make the 3 hour drive for just a 2 hour supervised visit. I struggled to work and pay my bills. I was depressed and more lonely than ever, but I never attempted suicide or anything else which further proved to me that it was the Cymbalta. The fathers family began to turn my child against me, and I missed her so much. I was informed by my job after some time that I was not allowed to go to the city to visit her because it was a COVID hotspot. If I did choose to go, I had to take 2 weeks of unpaid leave. If I went and was discovered to have not followed policy, I was fired. So I did what I could and ultimately quit and found another job. I had received help from my family for about a year while looking for work. 2 1/2 years after they first filed that emergency court order, my lack of visits and continued lies and assumptions from the father and his family as well as them having a better lawyer- I officially lost my child. I felt helpless. This has been the start of the end.
It's been 3 years, and I see my child when I can. It was every other weekend, until I was ordered to pay child support that left my budget in a deficit and would mow allow me to afford to see her at all. I was emotionally distraught and ended up having my FND become so debilitating that I lost the job (that was very very toxic and had a bully I dealt with daily as well as low pay and low appreciation, etc) I had had for over 2 years. Then I couldn't afford to pay child support, and still couldn't afford to see my daughter. I tried to find work and failed. I had 2 boyfriends during those 3-4 years, and the first one was stressful and didn't work out more than a year. Then I found someone who I am still with and feel extremely lucky to have by my side for almost 3 years now. My daughter's father held me in contempt of court for not being able to pay child support despite me not having a job, and I was arrested and immediately realized to "scare" me and berated by the judge who told me I was making up my health issues and essentially a failure as a mother and human being. I still have to go back to court. Now, my child's father and family is trying to take what little time I have with her and cut it to nearly zero. Thankfully, my child is almost 11 and our relationship has had a complete turn around. We enjoy our time together again. My child doesn't know anything about what's going on with custody and court. My anxiety is spiraling out of control and I have moments of severe depression. I'm on Desvenlafaxine (sp?) and had also tried Trintellix. Nothing seems to matter. I had a great therapist for 2 years, but he moved to private practice and I haven't seen one in almost a year. I have clonazepam to take for anxiety when things get rough. It helps, but I have not been approved to take it everyday.
I feel so lost. My life has unraveled to a point where I just don't know anymore. If you made it this far, thanks for reading. I appreciate you all.
There are a lot of details I did not include, just too many to go through. I am happy to answer any questions. This post was mostly to just share my experience in hopes it may help someone, or they can help me. I feel like this experience as well as everything that has happened previously I didn't mention have given me PTSD or just made my anxiety so bad I can't tell the difference. My FND is still kicking, but I manage it well. However, after failing to get on disability SSI twice but also losing so many jobs due to the disorder, I feel like I don't fit in anywhere. I never completed a college degree. Most of my experience I can no longer use because I physically can't work in those fields anymore. I'm sorry this post is so hectic and choppy, I usually take more time to write and add more detail but I just needed to get this all out.
Thank you again
Written by
LoverOfAllThings
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I read all of your post LoverOfAllThings. Can I say you totally inspired me with everything you have said. I’m really sorry you’ve been dealt a shitty hand and it seems that you have had obstacles and not nice things happen all along the way. What an amazing woman you truly are to be able to write what you have after everything! I am glad that you now have a good relationship with your daughter, that must be special. It was so nice to read that you have that support you need from your partner. Please know you are not alone and to be diagnosed with FND which is only up to you if you believe it. The doctors to me use it as a massive let’s get them off the list cop out. Please keep going, I’m not going to say try this or try that as you will have probably already tried lots of things. Clonazepam works for me too. I just wanted you to know that someone listened totally understands what you been through. Please keep living as best as you can, things can and do turn around. X love yourself first LoverOfAllThings Xx Take care
Thank you so much, your comment means a lot to me. I hope my post didn't come off as me giving up- because I definitely haven't! But every day is hard. I am lucky that my family and my boyfriend support me and encourage me. I try not to always feel like a burden, but it is difficult. I had always pushed through the tough times but with FND it often seems impossible. I am glad things have mostly improved for me and will never stop fighting! I hope that one day FND will be taken more seriously and diagnosed without all of the problems a lot of us experience. It is interesting to hear clonazepam had helped others with FND- I really think I will try to find some sort of regimen that works for me- especially now when times are tough. Thanks for your comment and reading my post!
No you certainly don’t come over as giving up at all! This is a long journey for us all, I have similar symptoms to most you have mentioned to Lady4 but I have left sided facial paralysis and sever migraines too. So I totally get your fight 💕 I was dx in 2018, now treated differently by GP but I will not be fobbed off anymore! You really will find what you need as you are already searching glad you’ve got a good Facebook group to chat to too x Best of luck to you and remember not all things work for everyone you will find what works best for you. I hope your symptoms start to ease off soon x take care 🦋
Hi, and welcome, you have been through so much and have fought some tough battles its no wonder you have developed FND. I believe people with ASD are susceptible to it. My son has been dealing with various symptoms over two years (now suspected undiagnosed ASD) and you will find others here (who have unfortunately had it much longer) are very supportive.
Unfortunately certain drugs have serious side effects and aren't explained thoroughly and we are very trusting of the GPs and medical professionals. Some drugs have to be closely monitored because of the suicide risk and it is debateable whether this actually happened in your case.
I would also agree you have probably have medically induced PTSD as you have had several bad experiences, which many sadly do.
Now lets look at the positives, you now have a lovely supportive partner. Your relationship with your daughter is good and you have joined a Community that understands and can empathise and support you.
There is also FND Hope and other websites like the UK one Neurosymptoms.org and FND Action group. Plus Re-Active (a paid subscription) in California (Community, online FND Education Classes, online exercise classes and meditation Re-Centre Classes).
Now breathe and let us know your current dehabilitating symptoms, so we can make some helpful suggestions.
Thank you for your kind words and some helpful resources. I have found a wonderful FND group on Facebook that has been really supportive and helps me feel not so alone in this. I feel extremely lucky to have such a supportive boyfriend now, and to have my family support (although it took them some time to come around).
Unfortunately it seems that you are correct in assuming I wasn't properly monitored and informed of the side effects of Cymbalta- I had regular check-ins and was clear about my worsening depression but they also approached this with "more Cymbalta". I really would like to figure out how to get help or diagnosed with PTSD and/or my anxiety. I know a few people with ASD, children and adults. It's a wide spectrum, and I am not sure if I may be on it or not. I feel like for me I am more towards ADHD and depression/anxiety.
My physical FND symptoms as of now:
Myoclonic jerks (sometimes severe)
Gait issues
Leg, arm, and grip weakness
Muscle spasms
Bladder issues
Falling
Neuropathy in my lower legs and feet
Occasional speech issues and breathing issues
When I go to move or do a task like grabbing an object or walking, I can't do it. Nothing happens or my arm/leg will just do weird things and go the wrong way or just jerk around instead.
The "seizure-like activity", two types
1. I start to feel sort of an aura, then freeze and cannot move or speak but am still conscious. Everything feels fuzzy and I keep my eyes open but can only look forward. Then I will suddenly jerk out of it after a few minutes or up to an hour. About the half the time, thus will happen repeatedly with small "normal" breaks in between. I also feel worn out after
2. I also can feel when this is going to happen. I suddenly start jerking around violently, mostly by abdomen/back. This is very very exhausting. I am conscious but cannot do anything to stop it. My hands or feet may contort in weird positions. Sometimes my eyes roll back or move around unnaturally and indivually (like going cross eyed)
Thanks for your comment and I'd love to hear any more feedback or advice you have to offer. Tha j you again, very much
The depression/anxiety and PTSD sound like secondary reactions to your present treatment/dealing with present symptoms.
You are dealing with a whole array of dysfunction and its not surprisingly so. But knowing your loved ones "get it" and are starting to understand and not judge, thats brillant.
Another positive thing is that you are aware of what happens and in what order, so you can try to intervene (regulate) before they occur.
If I would hazard a guess, doing the normal daily things and particulary dual tasks causes system overload. So perhaps if you broke it down and added in a sensory element or external focus (or both).
Someone said in our group they had problem walking from A to B but when they carried the dog, stroking it, they could manage it without a seizure (if my memory serves me correct). Just to clarify, I am not saying try this with a pet. However, from this example you can see there is a sensory element (the soft fur of their dog and an external focus, stroking the dog, so suddenly there got from A to B. I am not saying this was achieved overnight and I would have thought it would have been graded, ie increasing distance and there would have been occasions that they had a seizure, got to safe place, let it wave over them and tried again.
Its not just sufficient to say I can do this, by acheiving things slowly, givinh positive affirmation to your brain, it kinda learns again (like we had to learn everything from birth) that you can do it and doesn't have to intervene (ie take control).
I am also not saying these techniques will work for everything but I have heard a lot of success stories so it is possible to live a more active live again but it takes time.
Thanks, it interesting to hear your perspective and although my dog is too heavy to lift, I'll try to do something similar. I did have depression and anxiety before I had FND, but I do think FND made it worse. I appreciate your help!
I’m so sorry that all this has happened to you but you sound like a fighter despite everything so well done you. Go on YouTube and look up Dr. John Sarno, Nicole Sachs, Alan Gordon and Dan Buglio to name just a few. They have great resources and advice for dealing with your FND or as it’s diagnosed in the US as TMS. You will recognise your symptoms and the reason that your leg problems started in the first place, usually repressed childhood trauma as well as all the trauma you experience with your ex and family. You will get coping skills and advice. There is also a Facebook page for TMS sufferers that is great for asking questions and getting advice from other people who understand what you are going through. Good luck to you
Thank you very much for reading my story and your comment- I am not familiar with TMS. I will do some research and see what I can learn. I have realized the US is not the same as other parts of the world when it comes to FND. I was diagnosed with Conversion Disorder and treated terribly by every doctor for a long time. It still haunts me and affects me today. I love Dr. Stone and will definitely read about the others you mentioned.
Wow, let's all take a breath. Regarding clonazepam, I am in the unfortunate situation to be prescribed this drug when it was the first place to go for MYOCLONUS (jerking) and anxiety. I have been taking it regularly with must good/smooth results since 2007. I am up to 2mg. per day now. Not supposed to be taken daily anymore. Insurance doesn't cover that amount, but my neuro WILL prescribe it.
Mostly, I am now admonished by doctors and told to take some form of strong anti-seizure med like Keppra. I don't have seizures. However, I am entertaining tapering down this controlled substance SLOWLY this summer. I am 66. They say it leads to dementia and Alzheimers but so do many things or even nothing at all.
So cheers to you despite your complicated circumstances. In summary, I love clonazepam, it works for me, but society looks upon it with scorn!
Thank you- for reading my crazy post and the reply! I was prescribed a lot of muscle relaxers such as baclofen for the jerks, which can be pretty severe at times, but they just don't really help. The Klonopin and Clonozepam family is definitely frowned upon since it's a controlled substance. I appreciate your optimism- I'm usually more articulate but these last few years have been really difficult to deal with and trying to make a quick post about it all felt like a giant ramble. I feel like I tried some seizure drug in the past but can't recall the name and it did not help. I may go back and ask to see about an alternative or increased frequency of the Clonozepam, especially when I am going through so much stress. Can't hurt to ask.
I take 2mg in the am and 2 more at night. Newer drs freak out. Evidently say it's very difficult to get off it. You just can't go to 1mg... or everywhere day. Find someone to help
Yes they say it is addicting and can be dangerous to quit cold turkey. But I'm sure tapering slow is always a possibility, it's just similar to coming off of pain meds or alcohol with a lot of negative symptoms. Thanks for reading my hectic story and for the advice! I think I should ask about a more frequent regimen. I only have .5 pills but I noticed taking them too frequently (i.e. once a day or every other day) their usefulness seemed to subside. That's unfortunate for me. But maybe there is another way.
My legs go completely limp, every once in a while. I'm so afraid to go anywhere by myself. I refer to it as intermittent complete paralysis of the lower extremities. I rarely go out. I go to physical therapy, but i'm wondering if I should continue because my knees hurt. And then I find myself wondering if every ache and pain comes from f. N. D. I have noticed the doctors recognize conversion disorder instead of f. N d
Hi I have Motor FND, so can only imagine the stress you are under with your more complex symptoms. However I did undergo the UK Rehab FND Program many years ago and talked with several patients with FND Non-Epileptic Seizures. Both people were told that normal seizure medication would be useless for FND Seizures and were trained in Cognitive Behavioural Therapy techniques to reduce the anxiety/triggers. There are also many Guided Stress Reducing Apps available FREE these days you can access at key times, that they found helpful. Remember the primal `Flight, Freeze, Fight' survival routine the brain/body goes into is often the problem causing random reaction triggers ( Adrenaline surges), useful in ancient times, not so much when constantly active in everyday life today!
Having read your history Post, there are to me a lot of inconsistent symptoms with FND diagnosis, more like you experienced a transitory Spinal Blood Clot, possible Multiple Sclerosis or Hereditary Spastic Paraplegia. All of which are incredibly difficult to diagnosis properly and need several years with consistent symptoms to be sure.
Posture, mindset and medication are all going to be triggers and I applaud your strong will to carry on and try new ways of tackling your symptoms and daily stresses. Even if you have ADHD, it would still fall under the same Self- Management solutions they recommend for FND sufferers to practise reducing triggers/symptoms daily anyway.
I recently watched a documentary in the UK about Online Remote Working (wider industry now and made easier since Covid) and there are many jobs out there, where you can make money working from home, even with abroad companies and often on your own terms/hours. I realise you may feel daunted by that, given your low opinion of your education - which by the way is fine as your Post writing proves! There maybe something you can find which your previous Veterinary or life experiences can link into for an online job? Don't underestimate your value to others, worth looking into at the very least?
Pacing yourself is the golden rule of managing FND, try and split tasks into Thinking, Physical and Emotional areas and space out the most stressful things as much as possible.
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