Curious

[cshubert]

What are your specific FND symptoms and what physical situations cause your symptoms to worsen?

My symptoms are mostly neurological. I have uncontrollable jerking episodes and tremors. My head will quickly jerk left and "seize up" with small pulsing jerks that keep my head bouncing to the left. I also have yes-yes/no-no jerking episodes. At the same time that my head jerks left (or occasionally right), my leg and arm will kick out or spaz. Frequently, my jerking episodes are unilateral, happening either only on the left/right side, or only on the top/bottom side of my body.

At night, when I lay down, my whole body will jerk. At times, my stomach muscles contract as if I'm doing a crunch. This usually forces air out of my lungs and produces a "hu" sound. Simetimes my muscles flair in the opposite direction, pulling me from my back. I also have facial tics. My husband says I flail in my sleep and he can feel the muscles start twitching right before they flail. I also have essential tremor and when my FND symptoms are flaired up, it makes my ET worse as well.

The one consistency I've seen is that fatigue or things that contribute to fatigue (heat, low blood sugar) is the biggest contributing factor to an increase in my symptoms. Considering that I have Chronic Fatigue Syndrome, fatigue is a big part of my life!

I want to figure out how to help myself. I'm just wondering if anyone else has found a correlation between their symptoms and their physical triggers and what you've done to help?

[DMA1664]

Hi,

I'll start from top to bottom... head motor and vocal tics, stammer, headaches, dizziness, brain fog, poor memory, eye pain, temporary sight loss in right eye, facial spasms, neck spasm and pain, myoclonic jerking in the trunk, tremor in the right hand, IBS, lower back pain, hip pain, urinary problems, leg drop/weakness in the right leg, cramp/spasms in the right leg, hot feelings in the lower right leg and foot, hot pins and needles in both feet, non epileptic attack disorder, PTSD.

I'm going to query fibromyalgia and CFS at my next neuro appointment to see if things fall under the FND umbrella or are individual illnesses on their own.

Things that trigger attacks etc. are over exertion, tiredness, multi tasking, stress, loud noise, certain types of lighting, too hot/cold, hunger.

I've only been diagnosed 4 months ago, so I'm still trying to understand what's going on. I think the sooner you recognise the start of something kicking off, just stop. Try grounding and breathing exercises. Sometimes it works, sometimes it doesn't. It's worth trying to find yourself a neuropsychologist/neuropschiatrist as they may be able to offer some guidance and CBT or something. I think on everyones part it's a case of trial and error. I know that's no real answer or help, but as we're all different no size fits all.

Dave

[cshubert in reply to DMA1664]

Thanks Dave! I have been seeing a therapist for over a year now, which has helped with a lot of the emotional stress I feel.

I share many of the symptoms you listed, but the one that peaked my interest was the hot feelings you described. I have always been one to flush easily for things like getting nervous or embarrassed. I even flush when I drink alcohol! But lately, I've been flushing for no reason at all. I'll just be sitting watching TV and all of a sudden my left arm and left side of my face will heat up and turn bright red. Sometimes it's my face, neck, and both arms. Other times it's only one side...the left side usually, which is where the vast majority of my symptoms occur. I am curious as to what may be the cause for that...

Not sure where you're from, but I live in the US...I know I've seen a lot of people from the UK on this sight. Here in the states, I was diagnosed with Fibromyalgia and CFS first. The FND symptoms didn't start until about 8-9 months after the fibro/CFS. My neurologist did mention at my last visit that people with FND frequently have or have been diagnosed with Fibromyalgia and/or Chronic Fatigue Syndrome. I'm sure there's a connection, but who knows what!

I know when I was diagnosed with Fibromyalgia (8 yrs ago), it was still considered a depression related illness, even though mine started with a physical injury. I think more people now recognize fibro as distinct disorder, separate from depression. I think FND falls into a similar situation.

At my first visit, my neurologist explained that in the last year, the diagnostic criteria for FND has changed and no longer REQUIRES an emotional trigger, since they were seeing an increase in cases steming from illnesses, injury/accidents, and/or medication reactions. Even though I told I told my neurologist that my fibro symptoms started after an injury and my FND symptoms started after taking a certain medication, and told her that my therapist does NOT believe my symptoms are psychosomatic, she was still quite insistent that my symptoms DO have an emotional basis. I thought this was odd, considering that she was the one who told me about other cases without emotional triggers!

But what do you do? I'll just keep plugging with my therapist and maybe one day we'll figure something out! Thanks again for your reply!

-Christy-

[Hopeful40]

I can relate to a lot of what you describe as I recently had an episode of the stomach spasm/ contraction that you spoke about .

I wanted to share what I have learned for myself. I was diagnosed with FND and felt lead to continue searching as I felt something was being overlooked. So many with similiar symptoms. I stepped out of the conventional medical and had the Western Blot Blood Test which did show Tick Bourne Illness. The conventional medical ( four hospitals) had tested for this and I was told the test was negative. At that time I did not realize how inaccurate that blood test is. Since I have learned a lot and continue to learn. There are MANY similiarities with Tick Borne Illnesses (which there is a lot of controversary if one has had it for a while, with our conventional medical) and FND.

My heart goes out to you as well as your family. Remain hopeful.

Kimberly

[cshubert in reply to Hopeful40]

Thanks Kimberly! I recently watched two documentaries about tick born illness and was both shocked and dismayed by the way the patients and doctors were treated! I have considered having the test you mentioned to see if there is anything going on there. Although, even if there is evidence of tick born illnesses, I don't know that there's much they could do for me. I am allergic to penicillin and severely allergic to cephalosporin (Steven Johnson's reaction). At this point, I'm nervous to take antibiotics for anything, and only reserve them for use during surgery!

I told my therapist there's one more avenue I want to pursue on the emotional side, as it is the only thing that could possibly be a part of the problem. After that, if it doesn't resolve any of my symptoms, I feel I just need to accept whatever the symptoms are and instead shift my focus towards learning to cope. It's become a point of obsession trying to figure out what this is and why I have it, and that is worse than the symptoms IMO. The reality is, there's not a whole lot I can do to treat my FND because no one even understands what it is. I've been fighting these issues for 8 years, holding out hope that I will find a magic solution to give me my old life back. But the reality is, regardless of the cause, the way my life is now is my new normal...and I've got to come to terms with that. Only then can I begin to maximize my life. Thank you so much for the support!

-Christy-