Functional Neurological Disorder - FND Hope
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Involuntary body shaking

Hello! I am trying to get some answers. My daughter has involuntary body shaking, like body jerking and jolting. It happens mostly when she is sitting down resting or lying on the couch resting. She has a under active thyroid as well as being recently diagnosed with PCOS. Dr. said PCOS can cause anxiety and she thinks it is the reason why she has been shaking. Now, let me be clear, this is not a tremor which might be a sign of anxiety. This is more like body jerking. Does anyone else out there experience this type of involuntary bodily movement?

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Hi Kerrygreen I get jerks in my legs and arms not to bad though but I too get it when resting. I do know some members in Fndhope groups have said they have been to Dr and been given muscle relaxant , maybe worth having a chat with Dr. Xx

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Have you asked if it could be Tourettes? That can be just about sudden involuntary body jerks (the swearing bit is not a given). It also can have sudden onset and be linked to other medical conditions.

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I have similar symptoms to the ones listed above and both my neurologist and my psychiatrist said that Tourette's cannot be diagnosed if there are NO vocal tics, as it is a defining characteristic of Tourette's. Apart from the "tics" in my face, my movements are more closely related to myoclonus or functional dystonia.

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I have FND and part of my disorder is myoclonus.

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Wow! You could literally have been my own mother describing MY case! To be clear, I am 38 now. I was diagnosed with hypothyroidism at age 12 and PCOS at age 18. My jerking and tremors, however, did not start until I was 30. For me, I had an injury that ended up causing me to develop fibromyalgia. 8 months later, they tried me on several medications, 2 of which seem to have triggered the jerking.

I also have Familial Essential Tremor as well as a strong family history of Parkinson's on my mom's side of the family, though my brain scans do not indicate any concerns with Parkinson's. (My mother also has hypothyroidism.) My essential tremor is something entirely different from the jerking episodes I have. But the ET does get worse when I'm having a flair up of the other tremors.

My movements are more like spasms, similar to hiccups, in various parts of my body. My head will pull to the side and stay there, shaking back and forth. Or I will have movements that look like I am nodding my head yes-yes or no-no. My hands will curl in, sometimes making my arms curl in too, and will stay locked in that position or with my hand pulsing up and down. My legs will kick out and my feet will bounce. I even have contractions in my abdomen that feels like I'm doing a crunch repeatedly. Sometime, when I'm lying in the fetal position, the muscles in my back (opposite my abs) will contract, causing me to arch my back suddenly. I also get odd facial movements that look like grimaces or like I'm making funny faces. Occasionally, I have spasams that force air OUT of my lungs and makes it difficult for me to take a deep breath.

When I have an episode, these spasams usually happen in tandem, and usually on just one half of my body (left or right, or top or bottom). With a really bad spell, it can happen all over or anywhere. I have found for me taking too much SSRI greatly contributed to my jerking. As does being overly fatigued. As far as thyroid levels are concerned, in the last 4-5 years, my thyroid has been occilatiing wildly between hyper and hypo (I have always been HYPO since age 12). But my jerking began 8 years ago, so I do not believe there is a connection. PCOS does not cause anxiety, in my opinion. Depression, yes. And hypothyroidism can cause depression too. What anxiety I feel or felt pertaining to PCOS was situational and usually surrounded the discomfort I felt with the physical side effects of the PCOS (facial hair, Male pattern baldness, swollen belly, etc).

I have been in therapy for a year and a half and my therapist does NOT believe my symptoms are psycosymatic. That leaves me scratching my head as to the causes of my jerking since the MDs dont know what causes it either. That's why I was given the FND diagnosis. Not sure if this helps at all, but you are the first person to describe what I experience so closely!

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I was diagnosed with FND 8 years ago. Within the last 6 months I have been having more and more myoclonic spasms. Over the years they would occur every once in a while in my arms or legs. But lately they are in my torso and happen several times a day. It feels like a punch or electric shock without the pain. It almost always happens when I am relaxed either sitting still, reclining or almost always when I lie down to sleep. I am sure that muscle relaxers would be prescribed, depending on how severe the spasms are. I chose not to treat the symptom because I have come to understand that all of the symptoms of FND are neurotransmitter/ neuron related. I have not had any positive results with gabapentin and the long term side effects are foreboding. It is my understanding that Cognitive Behavioral Therapy helps to redirect misguided neurons. Controlled breathing has proven very beneficial for me for all of my symptoms. One statement from a neurologist that has helped me accept my condition, and has reduced the fear of what is ahead, "this is not a life threatening condition". Sending positive energy and peace.

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You have described exactly how i feel thank you .

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