I'm Katherine, and my friends call me Kayteezee (sounds like KTZ) or Katie. I'm considering this space a space of Friends.. so hi from Kayteezee
I'm about to turn 50 in June, and in many ways, I'm the healthiest I've ever been. Except for this firkin' FND, which came on like a freight train in January of 2019.
My FND has created a host of opportunities for me to use what I know about mindfulness and movement, and I am still Scared AF. It is frustrating to not have the control over my body/mind I am used to. Dissociating is terrifying. The neuropathic symptoms are perplexing. I'm relieved that the cognitive impairment seems to have abated, but I still can't work full-time or go into the office (am unable to sit or stand for a full day yet), so I'm embracing the reality of being temporarily disabled.
I've even doodling to help with the tremors in my hands and also to practice not being perfect ( I have no experience with art at this level)
I'm here to share and learn.
xoxo
K
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kayteezee
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Hi K and welcome to FND 🤦♂️...sounds like nice welcome to a bad thing 😂
Whatever you do, try to take it easy. Your mindfulnees techniques will help and it's good you have them. It is scary and i know everyone here will say the same, you're not alone (that was a bonus i found out when joining).
Welcome KTZ to the world of unknown. Mindfulness techniques are fantastic and if tremors are an issue, doesn’t work for everyone, but I found a small handball, that I now carry with me everywhere, when moving around in my hand seems to refocus my brain and eases the tremors. Worth a try if it works. My psychologist suggested to my husband as I disassociate a lot that if someone places a hand on your shoulder or hand it can get you “ back “ a bit quicker. My words as I forgot his exact words but sadly it doesn’t ease the horrible feeling you get after disassociation. I also hope your journey is as calm as it can be...
🤗🤗🤗 your totally spot on lass. A small foam ball or a technique i use for my PTSD <Is to keep a hair band that has the metal bar on it around my wrist and soon as my hands start to shake I flick the band with the metal bar hitting the side my wrist and it makes my brain focus on what's happening my hands an it stops. The squeezing of the foam ball Stress ball is not only brilliant for strength and distraction but it's also good to help you stop you from desensitizing you from the feeling in your hands too.
I hope this helps and I'm so glad your doing it what is helping you 🤗 I hope this New week ahead brings you a wonderful energy of happiness, health and wellness.be well and keep strong 🤗 Ce 🤗
I'm here only just over a month an I'm also getting my head around this but I have done a lot of research and still am seeking since my dignoses 6 weeks ago.🙄
But one thing I can advise you is that what your already doing is spot on and to always keep the positive mind frame your using because that's half the battle.
I'm here if ever you want company or to chat. I'll reply soon as I can if you do contact me.🤗😄 Be well and keep strong 🤗🙏😇👼
Don’t let any doctor slap a diagnosis on you unless you have had every possible test! Especially one that there is no real treatment for.
Have you had the Mayo blood test for autoimmune encephalitis? Any doctor can draw the blood and then have a set of male labs in Rochester Minnesota for testing. So many doctors have no idea about this test and no idea how to treat AE. Most don’t even know that it’s a real diagnosis or how to treat it! Been checked for Dysauntomia or For thyroid problems, including anti thyroid antibodies? Any of these medical problems and many others can cause the same symptoms!
You responded to my post with a command that implies I am not actively engaged in my own healing, nor am I informed.
Neuronal cell-surface antibodies can be present in any number of conditions, only one of which is AE. Dysauntomia isn't a condition - it's an umbrella term that describes a number of ANS problems, so testing for it leads to other tests.
I'm a former cognitive science person who has access to and knows how to read medical journals .
I'm also an autonomous adult, so I would likely gain greater insight from YOUR wisdom and experience if you 'speak' to me as I am one.
I’m sorry you took offense to me trying to help you! You sounded like you have accepted this diagnosis of FND when you said you are healthy except for FND that hit you like a freight train. You sounded scared because you said you were scared because you don’t have control over your mind and body. Almost anyone on here understands that Dysauntomia is an umbrella for many other illness. I figured you would look it up if you didn’t know because I figured you were interested in helping yourself and wanted to be informed. You have taken my offer of help in a very negative way, which I did not mean at all.
So many people on here have thanked me for my taking my time to give them information that they possibly did not know. Just thought I was helping!
Hey! Welcome. My FND happened in Jan 2018 and since gotten a lot better. So I just want to say to keep doing your best and you can reduce it down. It’s very slow but doable. And please focus on yourself and what you need.
I'm improving daily, and I think the last most pressing step for me is addressing the neuropathic pain. my psychiatrist has suggested cymbalta (I think)?? one of the antidepressants that helps with mood stabilization and pain
Love your doodle Kayteezee!
I’m a freelance artist and have run doodle projects with young hospital patients and school children. I had planned to undertake a practice led phd using doodles and pictorial games to research the premise that seeing is believing. But I wasn’t able to get the funding I needed so fell at the first hurdle and didn’t have the stamina to keep on submitting funding applications.
If I’d got the funding my focus groups would have included those with autoimmune diseases such as MS, Lupus and my own, Sjögren’s. I would have extended it to include Parkinson’s too. But would I have included FND sufferers I wonder? This would have been tricky for me because there are no official groups. And I admit that despite being diagnosed, I’m a non believer.
But people with impossibly weird and unexplained sensory symptoms would have been most welcome to my studio if we could have stuck with MUS (medically unexplained symptoms) perhaps.
Or else the evidence could come out of the relating to a psychiatrist of historic trauma, abuse, neglect. In which case the evidence could be in the psychiatrist’s written assessment as agreed by their patient. Or it might be due to medically induced trauma such as sepsis or heart failure or a car crash or series of sudden bereavements.
If a psychiatric assessment shows any of the latter type of trauma then this could be a useful thing to discuss regarding triggers for diseases such as autoimmune or other. Also medically induced PTSD could possibly account for these FND symptoms - in which case the treatment should be for PTSD surely?
For me as a life long autoimmuner, now aged 56, the key lies in us trusting our own instincts/ inner compass to know when something is wrong and to also have a good idea of whether it’s psychogenic or biomedical.
The next stage of my own doodle takes me to ask whether this tremor is psychological or physiological because I’m an evidenced based person who needs proof in visual format. The proof could be in the form of blood tests, histology or imaging and a proper psychological assessment. I could be in denial of course in which case this is as scary if not worse for me as it would be to have another disease process to blame. I hate the idea of not being able to trust my own compass and equally worry that my ability to convert the signals my brain and body are sending me.
There are many things that can cause symptoms listed as belonging to FND. For example B12 deficiency is very hard to diagnose but simple to treat with a trial of injections. The symptoms we both share could belong to this or else the severe fatigue of a systemic disease such as Sjögren’s - also extremely hard to diagnose unless you have had a lip biopsy exclude it. Most don’t get told this but it’s a fact and is how I came to be diagnosed.
But I have learned over my 56 years to trust my inner compass and I don’t like having it doubted or sent haywire. For me accepting that I have FND overlaying to explain for my tremors and twitches on top of my existing conditions.
Accepting this premise would feel to me like a kind of betrayal. Maybe after CBT etc this will change - but meanwhile I choose to believe myself and the doodle!
such wonderful suggestions, and I'm VERY happy to see my doodling instinct reflected in your Work!!!
what the FND diagnosis has done for me is give me a context through which to consider my healing. As an example - I'm not treating myself as though I have a 'condition' or 'disorder'.. I'm treating myself as though I have an Injury, and I've gone from wheel-chair to dancing in a matter of weeks.
I haven't been tested for Sjögren’s - if it were you - would you do so, even with improving symptoms? I know you can't give me medical advice, but I'm curious...
I'm working with a movement person who specializes in spinal chord injuries and who I've known for over 20 years, so she can 'measure' my movement based on what is usual for me, even though the CT and full MRI are both 'unremarkable'. I'm also working with a psychotherapist and a psychiatrist (specializing in trauma)...
I'll be adding hypnosis in June, and will continue EMDR
re: trauma and bereavements...
There is most definitely a HUGE PTSD component to the FND for me - acutely, it's related to being bullied at work (am officially leaving job at the end of the month so that goes away). Chronically, the trauma relates to some sexual abuse I haven't fully integrated and, very likely, the passing of my god father, father, brother's mother-in-law, and my mother - all within 14 months.. the anniversary of mom's death was just a month ago, so grief is present.. and I found my mother's body - that was traumatizing.
The doodling has been MASSIVE in helping me see where I'm at both cognitively and with the tremors.. it's inspired a new business for me, even!
I guess my thinking is that if having a conversion disorder induced by a succession of traumatic life events feels right - like a shoe that fits - then it’s good that you can take it on board. If you’re taking it as well as it sounds and really making progress then you should give it whatever label feels right too. I think you’re doing brilliantly - all power to your inner doodle to keep guiding you through all this and out the other side!
My concern is that when people like me don’t feel the shoe fits - yet the neurologist insists that it should and does - serious trust issues arise. The only science behind FND seems to be the science of exclusion.
But I feel that we humans are so complex and so many non neurological conditions have atypical presentations and wooly diagnostic criteria - that it seems unethical and unscientific for neurologists to anyone give the label of FND. I’m aware that I’m going against the prevailing tide of medical/ neurology opinion here in UK - so apologise if my views upset anyone.
I am diagnosed with functional overlay (secondary FND)- but very much against my wishes x
Agreed... about fitting shoes and the science of exclusion. If you're a woman, as I am, there's the added likelihood of being brushed off as 'neurotic' or 'hysterical';...
I could have related to the FND diagnosis exactly the way you are, but because I know how likely trauma is the cause, it was easy for me to accept...
I feel rage when people want answers, ask and advocate for themselves, and are brushed off. Do you live anywhere with doctors of functional medicine? I've had great success with them in the past for autoimmune problems..
Thanks K. You’ve just replied to my post about LDN on Thyroid UK as well so we are getting well acquainted rapidly! I can completely see why you have quite readily accepted the FND diagnosis and I’m intrigued to learn more about how you get on with getting better.
I suppose I feel quite betrayed by the NHS now because of this and other misdiagnosis.
For example I spent all of my childhood, adolescence and young adulthood being told that my quite apparent autoimmunity was due to psychosomatic issues. There were traumatic events but none I haven’t dealt with in my own way. The psychosomatic shoe didn’t fit but I had no way of explaining to grown ups and doctors that they were wrong. My inner compass was born and I quickly learnt that it was more reliable than most adults or doctors!
It transpired that I was born with hereditary connective tissue disorder (still being denied or ignored) and suffered infant illnesses malnutrtion, measles, mumps, chicken pox and whooping cough which my mum couldn’t bear to acknowledge - that have caused at least 2 confirmed autoimmune diseases, one of which we share ie Hashimoto’s.
I have so far been misdiagnosed with cholecystis, UTI Sepsis, RA (five years on immunesuppressants!), asthma and had many more equally serious conditions and diseases missed.
So, given that being disbelieved has nearly cost me my life a couple of times and also led to an organ being unnecessarily removed - I feel extremely mistrustful of the medical profession at large now! They may be mostly great at diagnosing the common stuff like cancer, heart disease and Diabetes - but there are rare zebra diseases and disorders out there with a solid biomedical basis so I personally cannot accept the FND label. Don’t get me wrong though - I’ve suffered sudden deaths grandparents (car crash on my 11th birthday) and sudden and premature deaths of both parents more recently. However I would say that the related trauma has been the catalyst for further autoimmunity and the symptoms we share are just a manifestation of untreated systemic inflammation rather than FND.
Anything extra I attribute to diagnosed wear and tear, some medically induced PTSD and a few bad habits. I feel I’m in a good position to self diagnose these but don’t care for neurologists who try to because they aren’t psychiatrists, immunologists, rheumatologists or gastroenterologists! And more importantly they don’t live with this crap 24/7!
I live in Scotland, birthplace of the revival of Freud’s conversion disorder, FND! I would never seek the advice of a functional doctor unless I knew them and trusted them very well. Basically I don’t trust any form of medicine that uses functional in its title. I like medicine to be evidenced based and when I research my own symptoms and signs I find mechanical problems galore and active autoimmunity/ inflammation that could explain tremors, twitches and vibrations. I have secondary Raynaud’s, small fibre neuropathy, severe degenerative disc disease, hypermobile joints, prolapse, inflamed ligaments, high inflammation in my blood, + ANA and skin cancer on my lip plus unexplained gastritis, dental problems and sicca, constant tinnitus with hearing loss. My diagnosis of Sjögren’s came from 100% positive lip biopsy.
I think I just have unlucky syndrome really?!
To save me asking you on thyroid UK -if you’re in UK then how did you persuade your GP to test your thyroid function 6 weekly? I think you might be in US as you’re on Armour thyroid? Xx
I agree with you Twitch. This whole FND is getting way too popular for the doctors that can’t figure out what is wrong! My son has a lot of the same symptoms that you describe and he goes to Mayo in Florida. He actually has antibodies too but now his neurologist has told us, over the phone, that she believes it’s FND. In other words...she does not have a clue what is wrong with him!
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