My FND story

Hello everyone!

My name is Andrea. I have been diagnosed with FMD for a while. My father also has an FMD diagnosis as well as additional organic problems. I received this diagnosis after a few years of trying to figure out what was going on separate from my father's issues. It started with extreme fatigue and weakness that hit so hard I would not be able to walk to school as I normally did. I had a few vertigo-like episodes that left me drained for days. Gradually the symptoms picked up in severity and variety of manifestations as well as complexity. Since this started while I was at school in Canada (but I'm not Canadian), I attempted to get medical care there. However, they just tried to shuffle me back into the US system. I ended up back here in the states after 8 years up there, going to school, working and surviving all while dealing with increasingly complex symptoms.

I remember going to my parent's doctor at one point. Both my dad and I had gone to the appointment. I was having a pretty severe episode of jerking, speech disruptions, inability to walk, etc. My dad was trying to help translate, when the doctor asked him to leave the room, and she blatantly asked me, have you been abused or are you being abused? I was completely taken aback and appalled. What in the world was she talking about? I was here because of these strange symptoms that were taking over my life. I was only 20 years old. I struggled to answer her questions because my speech was so disrupted. I eventually explained that I was fortunate in that I had never been abused nor was I being abused in any form. I could not even begin to process how she came about to that point. It was not until I received the diagnosis of FMD that I realized the doctors believed all of this was due to a past trauma. Unfortunately for them, that does not fit me at all. I took the diagnosis because my father had been lumped into the same category.

With this development, it lit a fire to understand what was actually happening to me. Everywhere I look for the science of FMD, it is not there. The research is not there, the interdisciplinary organizations interested are not there; the only thing I can find are people who make assumptions, and it drives me crazy.

I am 29 years old. I can't tell you how many different regimens of medication my neurologists have put me on, or had me try. The scariest one literally made me feel as if I was having a heart attack. I quickly dropped that med after 36 hours. The only medicine that really did help alleviate any symptoms, I was told I could not stay on it because it is bad for women's reproductive health. Basically if I accidentally got pregnant, I might pop out little Frankenstein. So, after countless efforts in dealing with different medication combinations, I have chosen to just not take them. I advised my doctor of this. So now I'm on a trial period to basically test how my body does and what happens. I'm watching it closely.

Most importantly I have found that while being off the medication is not ideal, I have been able to apply modifications to my lifestyle that allow me to go medicine free. The interesting and a little scary part is that over the past 8 months, I have had 2 episodes (1 more severe and 1 moderately severe) at work that have sent me home. While I have an FMLA, it is not something I would like to continue to happen. At the same time, this is my life. I can't help what my body does. I have talked to my boss and colleagues about it, so they know they don't have to immediately call the ER. really, the first contact is my parents. It is an interesting experience to go through.

I don't have any questions per se, but I'm definitely interested to hear people's stories and comments. This is a difficult journey to go through regardless of age, background, situation, etc, but I'm happy to be here with all of you.

Thank you for reading!

*Andrea

2 Replies

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  • Andrea, medication will not help FND, you need to get CBT, as far as we are aware drugs won't help, my daughter is currently on a programme here in the UK and although it has not been great for her, due to many other complex conditions she has. I have see it work for others, some having to be in a wheelchair and by the end of the 4 weeks walking out! Please try and get CBT for you and your dad.

    One hospital also asked us to leave the room and suggested to our daughter that she was having (making up!) the FND symptoms to avoid her exams!

    Good luck

  • Thank you Laura. I'm sorry your daughter had that experience. It seems to be a common theme, which is sad.

    I appreciate your advice. CBT has been mentioned, and yet our providers are having difficulties with making any form of a treatment plan due to the paroxysmal nature of our condition. I'm certainly open to these things, and continue to have very honest conversations with my providers about options.

    I wish the best for you and your family.

    Andrea

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