How do you work with FND?

Hi all, my employer asked me how they can help to keep me safe at work as I've just told them about my diagnosis and I had no answer to give. My seizures at work (disassociative) are increasing alongside some other physical issues which I mask with a smile and a can do attitude, but it's hard to keep up in a business environment with FND. Perfect analogy is a swan, seemingly swimming calmly on the surface but my legs are swimming like crazy to keep afloat. I'm trying to find the work/life/FND balance but it's wearing me down. Do you work and what measures do you have in place to ensure you're safe and can work too. or should I admit defeat and give up the career I've worked so hard for. Your feedback is much needed and appreciated. Thanks in advance 🙏❤️

21 Replies

  • Never give up. Think about what would be useful to you. More frequent breaks, flexible working inc (if possible) from home. Or if you need adjustments for more physical problems, like correct seating or better laid out working station to prevent unnecessary discomfort or muscle pain.

    In your breaks get outside if possible and practiced mindfulness and reconnect with the outside world. If your seizures are caused by stress it will help to decompress.

    I struggled immensely with loss of identity and depression following my forced medical retirement.

  • Thanks, I appreciate your advice and yes what you're saying seems perfectly reasonable to ask for. You've been objective and real here with your own experience and that's just what I need! Wishing you abundance 🙏

  • I think it very much depends on where you work and how far they will go to reasonable adjustments in the workplace . I have been supported by management but feel incredibly guilty when I have to take days off work due to my condition as the work then falls on my colleagues . I have been told by the hospital that reducing work would make a difference , but I can't get ill health it's down to reducing my hours and loss of earnings .

  • Thanks for your help. My neurologist said a break to get better would help also and is well deserved, but it's a hard decision none the less. I worry about isolating myself so am considering a career change, but is the grass greener? Difficult isn't it... Wishing you the best

  • I totally agree with hjane, as I'm in a similar situation, but I had to take a 13 week lifestyle break unpaid to get myself sorted out, it does depend on the type of job, try not to say nothing is needed. My job was in retail/office and I have had to drop hours from full time to part-time, with a final warning over my head. So good luck and look into illness and links to similar ones as you could have more than one.

  • Thanks for your help, tricky to navigate a work/life balance isn't it. Wishing you the best.

  • Hi, I work as a Health Visitor and am awaiting an appointment with Occupational Health. That would be your first call as they advise your employer the measures that can be put in place. I do struggle as i get so tired and dealing with tricky situations. Stress has been a huge prob for me as so short staffed and a lot of pressure on me. I wish you lots of luck and do understand what you are going through. I have recently been diagnosed with PTSD (ex army nurse) and having therapy - also helps keep me calm and focus on me. Sending you love and positive thoughts, Debs x

  • Thanks Debs, really inspirational people here... Is your appointment with Occupational Health covered by your employer and how did you go about setting it up? I hope it goes well, keep us posted. Love and light to you too x

  • I lost my job just before last Christmas. I'd tried so hard but for the last two years found myself monitored and treated completely differently to the rest of my colleagues. Be aware that Occupational Health are basically employed by your organisation and, while they may be helpful initially in recommending ergonomic chairs, reduced hours etc, if things remain difficult, they can just as easily state that you are not fit for work.

  • C_lace, I am so sorry you are being hit with this as well. FMD is not a fun thing to have to deal with that is for sure. I started having issues a little over 7 1/2 years ago. I worked in a call center in the fraud dept. I started out by losing my voice. My work was kind and helped make changes for me for years, but 2 years ago they started having issues with me being off the phones so much, and I felt extremely guilty that I wasn't pulling my weight. I did more on the computers, but I couldn't take the calls because of how the movements were causing more issues with my voice not just being hoarse. They finally said that I needed to claim long term disability because I was becoming a liability to them in more ways than one. I have had to fight to get and keep disability given that they can't find anything medically to show anything is wrong, but if you were to see what I go through, you would agree something needed to be done. Not so easy when disability etc.. are in another state and they can't see you. This is such a frustrating thing to go through. My suggestion is to do what you can. See what they are willing to do to help occomodate you, and keep trying. I have enjoyed being home yes, but feel so guilty that I am not able to help financially with my family. It can lead to depression, more stress etc.. I wish you the best! Don't give up fighting, but don't kill yourself doing it either.

  • I had a wonderful cleaning business i had worked for years to build, which I loved ,this was17 years ago. I was making good money,also was homeschooling my two youngest. It was hard but was simply not able to work any longer. one of the fortunate ones in that i got disability right away on the first time. I am writing you also because you mentioned your voice. Have you been tested by a specialist for spasmodic dystonia? Might be worth a try. God bless, and please ALL have a pain free encouraging day, Cathy :-)


  • Hi cathy, oh how cool about your business, I am sorry this is causing problems with it. You actually got disability the first time? What's the trick? It took me about 9 months or so to convince my company to allow long term disability, and waiting for soc security to go before a judge. They said it could be over a year wait.. yes I was tested for SD. They actually diagnosed the initial voice problems as muscle tension dysphonia. Basically the vocal chords were being pulled to tightly outwards keeping them too open and not allowing the chords to touch and vibrate properly. I still continue to fight that issue, but it has changed along with all the muscle issues.. The muscles in my neck tend to spasm which makes it hard to articulate properly and breaks up my voice, as well as trying to get words out at all sometimes in addition to the hoarse voice here and there.. It is very aggravating to not be able to communicate. I have been back to the speech therapist and Doc recently, and I completely stumped them. I was hoping they might have some suggestions, but they had never seen anyone with this problem before. And they are the experts in my state. Fun huh? I keep trying though. I try my best to keep a good attitude, and have an amazing therapist that I love. Best of luck to you too.

  • you are in the states correct? I was diagnosed by Dr. aronson at mayo in rochester and again at marshfield clinic with spasmodic dysphonic, mine too pull apart when speaking. For the most part these days medication helps with my voice, until I get tired. Also now have hemi-facial spasms. As I am writing this am doing a motility testing on my stomach for 4 hours, praying it shows something. The pain in excruciating. Anti-seizure drugs are very helpful as well at baclofen. I have been on Tegretol, topomax, primidone, and gabapentin. Currently using gabapentin and primidone and baclofen. Has completely stabalized the dystonic storms or seizure activity as most on here call it.

    The disability was easy as they could see me, I could not speak, I could not walk most of the time, face was distorted, and body spasms much of the time. With the drugs it helped a lot but breakthrough symptoms were daily until the latest combination in the last year. Then two months ago the hemi-facial spasm began along with the stomach disorder. Cannot eat hardly at all, pain most of the time, and losing weight fast. It has been a wild ride for sure. But I have great faith and I know God sees it all, and there has to be a reason for the suffering. Feel very blessed to have had great Dr.s when so many do not. Breaks my heart. Please keep searching for a good Dr. one that will at least try some meds, and as far as the disability ask them to send you to their Dr.s, they are all well trained. Last thing, as a very last resort, use a lawyer, they will get it, unfortunately they take so much of it, those who need it have a hard time getting it, and those who seem they don't some how figure out the system, so hard. I pray all the best for you. If you ever want to talk send me your phone number in a private e-mail, I will call when able, most days right now are not too good for me, I am typing most of this one handed as the pain is so great I have to hold stomach in, this too shall pass, or I will be going back to mayo soon. God bless you, Cathy

  • Oh my gosh Cathy, I am so sorry you are going through so much. I can't imagine the pain you are in. This is definitely a crazy thing to go through. I Am in the states.. Utah, don't have many people out here that know what to do. They usually send me down your way to do studies, but insurance won't pay for treatment. So stupid. I have recently found a Neuro that isn't willing to give up on me yet.. Which is a first! Usually they just say I don't know and send me on. This neuro has me in ropinerol which seems to be helping with the movements the most, but not completely. And aptiom which I haven't seen much of a difference.. I've tried so many others that just make me sleepy or dizzy. So mine started with the voice, then about 3 years later started up in my hands and arms shaking violently.. Then it stopped for 4 months, the started in as a tick or slight jerking in my head. Then it went back into the arms, and shoulders, neck and head.. It now seems to effect the whole body here and there. Thankfully I do have pretty good somewhat movement free days, but again the voice is screwed up.. When it is bad, I struggle to walk, legs freeze, and body will go into spasm, almost like whole body dry heaves. Talking becomes almost non existent as I can't get words out.. I do have non epilileptic seizures here and there and they can hit back,to back. Most was about 15 or so within a few hours. That day sucked. Most the time it is myoclonic jerks through the body. There are times where the jerking gets so bad, almost like hiccups that it makes it hard to breathe, and have to use a nebulizer with a mask to open up the airways.. Otherwise feel as though the muscle spasms are choking me. Many times my worst issues happen in the middle of the night, it is so hard to show anyone unless someone can get it on a video. My muscles seem to like to make me fall out of bed. Makes for an adventure. Ha ha

    Thankfully I can still get around, but issues do seem to hit when they want. Not when I would like. I find that cold really gets to me, which is not good with Utah winters. Even the coolers at Costco can get me going. So I try to stay away. I have found one thing that helps calm things down. I love to draw, and,it seems to channel things and makes me calm way down. I am looking at ways to try and promote my drawings and see if I can sell some. I love to do animals. I should email you some, see what you think.

    I would love to chat via email.


  • Hi Cheryl, My email is, Email when you feel up to it. Yes this thing is a challenge, I to am on ropinerole, for restless legs. If you talk the neuro into trying an anti-seizure med you might see a lot less of the dystonic storms, or seizure type activity. When I was at my worst would have them for hours at a time, lasting as much as 16+ hours per day. That is why gabapentin has been such a blessing to me, so blessed to have had only two really bad ones in the last 6 months. After the tests today my gastroenterologist phoned and is sending me back to Mayo. I fear this stomach issue is coming from the brain. You know I have done well with all of this actually, by God's grace, even the disfiguring of my face, only a small slit on the right side remains open. I sound very slow. Right eye clamping shut much of the day, I loved to smile, and now I really don;t have an outward smile, my right side of my face looks paralyzed, but I really have dealt with all that ok. But this stomach issue threatens to fail me, after all of it, this. Just really hard right now. Keeping praying and hoping for help. Sorry to vent, just a really tough day.

    I think you really might benefit from botox in your vocal chords, it usually lasts about 4 months. Try to find a spasmodic dysphona or dystonia specialist not to far away that would take your insurance. If you get the disability you would get medicare which would be very helpful. I will pray for the best. Look forward to hearing from you.. God Bless, Cathy :-)

  • Thanks for your open and honest feedback on your own experience, it's a real grind isn't it... Especially with all the guilt on top. Your wishes are greatly received and I wish you the best also...🙏❤️

  • Great positivity despite the difficulties from all of you! I've not returned to work yet since having seizures in July and the various other ongoing symptoms - I teach so am not due back yet anyway but have now realised/accepted (Trying to) that I can't right now. I need to learn to pace myself and be kind to myself. I'm signed off and have my next neurologist appointment in a couple of weeks time. I've had a meeting with my head who is incredibly supportive and kind. When I do return it'll be after meeting with the occupational therapist and will be phased. I will build up slowly and perhaps do a couple of hours one day, not the next and so on...I like to think I will be back to my normal hours (5 mornings as I have 2 young children also) sometime in the future but it's certainly going to be a slow process. Good luck x

  • I don't have seizures but my mother in law does. We both are suffering with fnd. I'm familiar with putting on the show as I have trouble walking and tremor in my head. You have to pace yourself walk slowly don't run at all. Keep things on hand to help you like vitamin b drops for fatigue. I take magnesium for my spasticity. Tylenol for pain relief..other pain meds from Md..I take diclofenac. I also use cymbalta for chronic pain. Peppermint oil for migraines etc. Now as far as safety you should really not climb latters. You can feel when one is starting get into a safe zone a chair with carpeting under it or something. You should look on regular seizure pages and go by those safety measures for your employer. Good luck to you and thank God you have an employer who is looking to help you. When my mother in law was diagnosed they took away her license to drive I hope that if this has happened to you that you won't get down. Oh and realize when you over do it today tomorrow will be difficult allow yourself time to recharge.

  • I forgot to mention to check out the clinical trials for your kind on clinical I think. It suggests that Zoloft helps with the number of seizures during the day also therapy is different depending on the kind.. movement disorders like me suggest physiotherapy but I'm thinking it suggests maybe cognitive behavioral therapy for seizures. Hope this helps

  • Hello FND

    I am having the same exact problem at my work as I have FND PTSD major dissociative symptoms and have been off work for four months but my manager finds it difficult to accommodate as in a busy working environment, shouting and anger often trigger my responses however finishing late at night being alone at the bus stop increase the intensity of the dissociative responses.

    I am covered under the accident compensation act so for my manager has tried to accommodate finishing late means accident compensation will now take me home with a taxi chip which means that I am avoiding major triggers.

    I will not give up.

    Sometimes it is not far but a good doctor can make a great deal of changes on my behalf

  • It is tough. I had understanding employers thankfully. But I have lost one job because of my inability to be consistent. Don't get discouraged! New opportunities will come.

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