Yesterday was the first time I had this happen and after hints or tips from anyone who has been through this. I had a busy day with a meeting and other things yesterday and my OCD was in full swing ( thanks FND as I never had OCD bad before this🤨) anyway that afternoon/evening I was standing in kitchen and felt nauseous as I do when having disassociation or shaking and I felt I was glued to the floor... I could move my body awkwardly but my brain seriously felt like I couldn’t. Hope this doesn’t sound too weird but hey isn’t everything about FND weird... the rest of the night was horrible as couldn’t do anything by myself and my shakes started within a minute of waking up today but today I can walk, talk etc just my gait is a bit off,
And full on pins and needles. We tried the usual touch approach to bring me to reality and breathing but scared it could happen at work or when I’m out and no one to help. I couldn’t move arm or leg but have had paralysis and it wasn’t that
Any ideas etc be gratefully accepted
Thanks ( and sorry this is so long)
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Regaining-control
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Have you been checked for autoimmune encephalitis or Dysauntomia? Read about them and see if it fits, then ask doctor for the tests. The Mayo Clinic can analyze the blood that any lab draws. Don’t settle on FND just because a doctor says you have it. The newest science is out that many times these weird body actions come from an antibody. So many doctors don’t keep up with what is new in medicine and will slap a FND label on you when they can’t figure it out. There is a reason that your body is misbehaving this way. Don’t settle for a ghost diagnosis and suffer the rest of your life! Start reading about your symptoms. Get on the Dysauntomia and Autoimmune Encephalitis Facebook pages and talk to so many people that have been misdiagnosed and find out years later that they had something cureable! Don’t give up, find the truth!
Thank you. I have also seen a specialist who deals with the unknown even having bloods sent from here in Aus to Germany. He diagnosed me with critically low levels of some things and hashimotos so we are definitely trying...
Hashimotos can be a cause of Autoimmune Encephalitis! So many people see specialist that miss the true diagnosis. I’d keep searching to FIND a real answer!
Haven’t been back to specialist since diagnosed sept last year as things got bad and we have to travel to see him privately but you have just given us more energy to see him again and see what he can do. He stepped away from the main stream doctors and does tests that I’m amazed the hospitals didn’t... he also discarded a lot of other theories I’d been given as well so thankfully people like him do give hope.
Unpleasant experience you had there. Have you tried propranolol? I don't think it helps with getting stuck but it should help with slight tremors and calm the anxiety about the symptoms down a bit.
Doesn't sound weird RC, sounds like a pain in the ass tbf. I call it "getting stuck" and i just wait for a bit for it to subside then walk off awkwardly like a scoulded child 🤦♂️😂
Love the reply, I was originally on heaps of tablets for “misdiagnosis “ including up to 7 Zyrtec plus others a day as just couldn’t breathe so been trying to do everything drug free as believe that could have brought on my major symptoms of stroke like symptoms / paralysis etc but who knows. Hoping to see neurologist in few months so may look into that side yet, now we know what it is. The scolded child analogy runs so true though as I’ve gone from being bossy mum to almost a 2 year old where my kids tell me sit down and rest and take over. Love them to bits but this role reversal is hard sometimes... lucky we joke like anything about the symptoms which takes a lot of stress away from this horrible disorder...
Ah the old "throw and see what sticks" technique the docs use. That's a dangerous game but i suppose before they find out it's FND it's the only thing they can 🤷♂️. Not very helpful to the patient though.
Yeah it can be very frustrating having that change of roles happen. I tell my kids to beat it like the stubborn idiot i am but i do appreciate the sentiment.
Take it easy and try to adapt with your limits. Maybe a muscle relaxant might work, although I've been on one and don't feel any difference yet 🤦♂️
I have similar symptoms and have dissociated at work. I'm reading your question as a request for information about coping with the dissociation and wonky movement in more public contexts.
This is what has been working for me - and my diagnosis is recent. My symptoms came on like a freight train, and I'm grieving the death of my parents. I have trauma from my mother's passing specifically, etc.. I had massive cognitive impairment at the beginning of 2019 - like, I couldn't do a simple A+B=C equation in a spreadsheet (I usually can do complex equations without any problem)
I asked for accommodations at work. In the US, we have federal laws protecting people with disabilities (FND and OCD qualify). There's a process for this, and if you are in the United States, I'm happy to share with you information on the ADA and accommodations...
Another thing I choose to do in public is BE PUBLIC about what's going on... I look usual (I don't like the word normal for health) in that I have two arms, two legs, my body appears as though I *should* be able to move without any problems, but that isn't the case all the time any more.
My short answer is this: ASK FOR HELP
Asking for Help has been a HUGE piece of my mobility recovery. It's helping me live the truth that my body/mind needs assistance, and I'm seeing every day, that people have empathy and act on it.
An example - a fire alarm went off and my feet were F*(Ked up that day... I asked a stranger to help me walk out of the building by saying 'my nervous system isn't working properly today - would you mind holding my arm and helping me out of the building?'
Another example - I was getting coffee at the co-working space where I work, and my hands were trembling. It was a horrible balance day as well, so I asked a man I didn't know if he would please walk with me to my office and carry my coffee because my nervous system was being wonky. Turns out, he's a venture capitalist in the space I work in, so it ALSO became a finance lead for the startup I work in.
Third example.. I'm still learning how to walk after being in hospital for several days a month ago with no control over my lower body. If I'm moving slowly and someone bitches at me or honks at me and I know for sure that the ire is directed at me, I say (ok - sometimes yell) - 'I have a disability and I need to move slowly, so back off'
Final example - I asked for accommodations at work. I'm in the United States, and we have federal laws protecting people with disabilities - the OCD and FND would be qualifying diagnoses in the US. If you are also in the US, I'm happy to share some resources.
Asking for help can be one of the hardest things to do, yet it’s just a few words... I still do struggle with that... we are quickly realising that no one else will do tests etc though unless I push, so it is a big learning curve when you have always been very independent. I’m fortunate that my work was so supportive including the clients who followed my journey. I had four months off after almost 2 weeks of paralysis and the rest and can only do 15 hours a week now, but I am always supported at work, work solo but do laugh as anytime there is s bang or clients drop things, bless my boss, she always races out to check on me... I’m Aussie and sadly they closed the only major FND clinic which had a wait time of over 3 years due to lack of support and funding so only private available which when you have to lower your working hours isn’t always feasible. I can still see my original neurologist but who knows when that will be so it is just waiting but that’s ok. I’m not going anywhere or should I do the FND joke: I can’t go far or fast... 😉
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