Confused

[Chubbs09]

Hello

My name is Nicole and I have been struggling with problems walking, tremors, chronic fatigue, insomnia, body jerks, memory and concentration. I went to several neurologist who told me that it was imaginary and that I would wake up one morning and be back to normal. I have always had problems with depression and anxiety which have gotten worse, so my primary care doctor referred to a therapist who was trying to help me. I soon became frustrated due to physical and mental limitations. I live in a small state with limited specialist.

My husband and I decided to go out of state to see a neurologist who recently diagnosed me with FND. He explained to me that my symptoms are real and not made up. I also saw a neuropsychologist. They are working on a treatment plan.

I am still very confused about my diagnosis.

FYI: I also have fibromyalgia, arthritis, neck and back pain.

[Python42]

Everyone I have heard from and myself have experienced a medical professional saying we are faking or making up the symptoms. Due to the nature of this disorder, symptoms may seem random in both what happens and when it happens. Everyone experiences something different. Most people do have a general pattern though.

For example, I tend to get seizures when stressed and paralysis or severe muscle weakness when overstimulated. I get tremors to release anxiety. This is not everything, but the main stuff. Point is, it can take a while to figure out what triggers your symptoms and which ones are triggered by what. Sometimes, you just won't know.

I am glad you are working on a treatment plan with a neurophysiologist. The diagnosis changed relatively recently and the USA is having trouble catching up. Everyone I've seen isn't caught up and are stuck with the old diagnosis (conversion disorder) and work with information that is no longer accurate. I'm still trying to find someone to help me.

[Tracey0101]

I have tremors and have twitches and I have fybromyagia osteoarthritis and EDS hypermobility I was born with Cerebral palsy too. I have autism and adhd and learning disabilities as well and lots of other conditions and mental illness as well. I have migraines and my body temperature hurts I burn if I put my foot on the floor without socks on and I have to use a tea towel to hold a plate or cutlery that is too cold and painful to touch my arms feels like that I have broken both arms they are very weak in my arms and my legs feel tender joints I can't move my head right or left without it being painful my neck and shoulders so painful also my knees and feet and both arms I cannot bend my certain joints or muscles to any towards me or back and forth the physio couldn't do any exercises with me because of I can't do movements as she said that she has to be very extra careful because I can't bend certain fingers and thumbs and toes and feet and joints and I only got to slightly move a finger that can still bend but it suddenly gently bend my finger and I couldn't move it back or forth and painful so it can just suddenly want to bend your toe or finger or thumb and the movements lose its movements and can no longer bend your joints and speaking gets slurry and tongue tide and things are torturing me like when the nurse at to put dressings on me they would usually use their solution as it is cold or freezing cold with me they relized they couldn't do that so they at to use hot water boiling on my skin as if cold or freezing cold my skin couldn't tolerate the cold or freezing temperatures on directly on my skin I screamed the hell out as it was extremely excruciating pain just even a tiny bit of cold temperatures to my skin it was hell. Its also hell if its boiling water on my skin its burns as though a hot boiling water came out of a boiling kettle. Yes very extreme and it shouldn't be as this by my brain is saying its too painful and too freezing cold or too boiling hot and the nurses thought no this is crazy and not happening they didn't believe me they kept saying calm down I'm not hurting you at all stop screaming it can't be this bad stop it. But once they knew it was really happening they used warm water and I didn't scream anymore they didn't understand what was happening was really happening to me that I told them that they were torturing me they said really they couldn't believe that they were torturing me but it was really happening to me. It was that extreme. They say now that I taught them something different that they couldn't even Imagine this and learn from it if they ever come across someone else same problem. I said to them its the brain that hives the signals of pain and hot and cold temperatures when we are hot or cold or freezing or whether we have little pain or severe pain and our brain does our movements and balance like walking sitting down laying down and our speech slow or faster and our thinking cognitive thinking and smiling as if muscles are not working around our mouth muscles we can have problems moving our mouth to smile because the muscles are tight around our mouth muscles and it effects our speech and lots of other things our hearing too and vision so this if not working properly and our brain not doing what it should be then if we get FND symptoms then this can happen too not always but for some people it can do I think for me it was the big knock of trauma I went through in 2019 my brain changed the way it use to work from good to not normal anymore I cannot even feel my legs they feel numb all the time and feels like they are not part of my body anymore but I can still feel the pain it sounds really crazy to even think that.