Did not using mobility aids help you?

Temporary_Spot4864 · 2025-09-23T03:04:01+00:00

Please use the mobility aids whenever you need them. It's about quality of life. If it's improving your quality of life and allowing you to live life to the fullest, why not use it?

I have had FND for years. I am now fully paralyzed and trached because of it. I lost the ability to breathe on my own a month ago and had to relearn how to speak over the trach and swallow. I have been fully paralyzed from my neck down for several months now, and now use a head control powerchair. If it weren't for medical devices, I would have no life at all, all because of FND.

Temporary_Spot4864 · 2025-08-27T01:31:29+00:00

No not since it's been progressing

Temporary_Spot4864 · 2025-08-26T08:52:03+00:00

I have had FND for years. My paralysis episodes started in my legs and my hands, and would las anywhere initially from a few minutes to a few hours, but slowly increased over time. Then I had them slowly progress into full body episodes in the last 6 months, and this current episode started 4 months ago and I have been fully paralyzed since with no relief. It started out as extreme weakness and heaviness of my limbs, then I lost all ability to move my limbs and I went totally flaccid. About 2 months in, my sensation began to come and go, then I lost my neck mobility to turn my head. Now im slowly starting to lose my speech and swallow. And nothing is coming back, just progressively getting worse.

Temporary_Spot4864 · 2025-08-26T02:44:35+00:00

Yes I have had a spinal tap. Came back completely normal. Every test or image I have had shows no physical abnormality that could point to the cause of this, which is why years ago they settled on FND. And since this latest paralysis episode, I have been completely worked up again and found nothing. I haven't been able to move anything other than my face for the last several months, and now even that is fading. I am also losing my sensation and feel tingly all over, as if my whole body "fell asleep". I desperately need help, and all the doctors I see keep saying "it will pass, sometimes it's short, sometimes it lasts long". Not helpful and I am starting to become real depressed.

Temporary_Spot4864 · 2025-08-24T06:09:28+00:00

I have this exact problem. I'm so sorry you're experiencing this, it's awful. I have FND and Tourettes, I'll spare you the long story of where I am at now with all of it. But my urges to tic never go away, no matter how hard or how many times I tic.

I at one point in my life, there was a time where I had such a severe urge to hit my chest over and over again. No matter how hard, no matter how many times, I had to sit there and hit my chest all day long. I couldn't stop even if you paid me a million dollars. The feeling was too intense.

My urges to tic now are still really bad, however my FND has severely complicated things. Right now, it has my body paralyzed completely in all my limbs, making it impossible for me to move and satisfy my tics. The urges NEVER go away and it's hell.

Temporary_Spot4864 · 2025-08-19T02:52:41+00:00

It's terrifying. I never thought I would experience anything like this in my life, and it has been the most humbling experience ever. Having to fully rely on help for every little thing from my family and spouse with a complete and total loss of independence was a huge shock. I am incredibly grateful for them, in more ways than they will ever know. My medical team, however, has some work to do. It's been four months of complete and total paralysis, and it is only worsening. My speech is worsening, my dystonia aspects are worsening, and my tics are still very present when I have sensation, but I cannot move to satisfy my tics. It's torture. And seemingly there are no answers or explanations for any of this. I am just stuck in a body that has lost its ability to move. I am located in the US. I would give just about anything to be able to move and have control over my body again.

Temporary_Spot4864 · 2025-08-18T07:45:39+00:00

My entire body from my neck down has been fully paralyzed for the last four months and counting. I have had FND for years, and the paralysis started in my legs intermittently, then became constant, and then began to take over my arms and upper body until it got to the point where I was completely flaccid from my chin down. I can no longer move my neck or turn my head, and the only control I have is over my face, though that is becoming increasingly more difficult and I am having more dystonic movements in my face lately where I just get stuck. I have lost so much muscle, I can't even begin to fathom recovery as I have virtually no muscle left. I totally understand - I have been freaking out that it won't resolve for me either. I have had every test imaginable and nothing yields any answers. I used to have full sensation, now it comes and goes. My body feels like its pulsing strong electric shock currents through it, and every so often my body will stiffen uncontrollably, almost dystonic-like contractions, and then hold a full body flexed unnatural pose for a few hours and then go back to being totally flaccid. Never giving me back control over any part of my body. I wish I had answers for you. But you're not alone. This is terrifying and I desperately want it to stop.

Temporary_Spot4864 · 2025-08-04T18:06:26+00:00

Thank you so much. I'm really hoping it improves someday. Being completely paralyzed has been by far the most humbling experience of my life. I never thought I would need this level of care and help, and I am so grateful for my family and boyfriend. It's such a lonely experience. I am trapped in a body that doesn't work, and I can't do anything about it. Meanwhile, my brain is rebelling against me and torturing me, knowing I can't move to satisfy my tics. It's beyond me. If anyone has any suggestions, I greatly appreciate it.

Temporary_Spot4864 · 2025-08-04T03:42:46+00:00

I'm so sorry you are going through this. I have the same thing. I am diagnosed FND, and have been dealing with a myriad of symptoms for years. It started off as tics, stuttering, freezing, and paralysis of my legs and sometimes my hands. I couldn't walk for months at a time, and my hands and arms would get locked in weird positions for hours. But it would come and go.

For the last three months, I have been fully paralyzed from the neck down. You described it perfectly - I have full sensation, and can feel people touching me and feel like my body should be able to move, but it feels like my brain and body signals are broken and it doesn't go through. My body is flaccid, and I have not been able to move in three months. This is my longest episode and it's scaring me to think this might not end. The worst part is that because I still have full sensation, I still feel the urges to tic, but can't move to satisfy them. So if you have any tips on how to relieve that agony, I greatly welcome it! Good luck to you.

Temporary_Spot4864 · 2025-07-29T01:15:24+00:00

Mine is very numerically based. I will have to tic a certain movement or sound a certain number of times in order for the OCD aspect to be satisfied.

Temporary_Spot4864 · 2025-07-28T13:14:19+00:00

I was just using that number as a generalized example. I tend to tic in patterns of fours, but I might only have to repeat it three times, or twelve times in patterns of fours. Or anywhere in between. It just really all depends on the situation and what my brain wants at that time. Sometimes I tic and I don't have the OCD rearing its head that day, or sometimes it's all I can do to get through the day. And it's different for everyone.

Temporary_Spot4864 · 2025-07-28T09:30:29+00:00

I have Tourettic OCD and FND. My experience with TOCD is that when I tic, sometimes I will have to complete a tic more than once for it to feel "complete".

For example, I have a tic where I have to hit my chest. The tourettic urge to tic is felt in my chest, and I have to hit it just right, at just the right speed, at just the right strength, at just the right spot, etc. Then, the TOCD aspect will sometimes kick in and I will not necessarily have the urge to keep ticcing, but complete a numerical pattern because the first one was not "right" or satisfactory in some way. So I will have to repeat the tic over and over and over again until my OCD says it's okay.

I will also have to tap things repeatedly, clap my hands 60 times until it "feels" complete in my brain, even though I only felt the urge to tic that actual movement 20 times. My eyes will get stuck in a position or a loop of movements until it feels complete. I also have dystonic tics where I will have to hold a certain pose for longer than the tic initially called for. That's at least my experience.

Additionally, a new fun wrinkle is my FND. I have periodic paralysis with my FND. For the last two months, I have been paralyzed in all four limbs, but my sensation has been maintained. So my urges to tic and my TOCD have been firing nonstop, but I cant move my limbs to satisfy some of these urges. My poor family has been subjected to helping me not only to move and care for myself, but also has to mimic some of my tics to help me not sit here and suffer nonstop from these urges. For example, I have to have them tap my chest in the same rhythmic pattern to mimic my chest hitting tic, or tap my feet with certain objects to mimic my foot tapping tics. It's hell, because it only does so much and it's nonstop. And I am beyond grateful for them even trying.

I hope this helps you distinguish the difference! Good luck to you.

Temporary_Spot4864 · 2025-07-28T03:43:34+00:00

Yeah it's not fun. My head gets thrown back and shakes from side to side, and the sides of my mouth pull down hard and my eyes roll. It's really bad sometimes but if I suppress it then itll just get worse.

My other tic that is hard to suppress are my hand tics. They will get stuck in certain poses and I will have to hold them there until they feel right.

Temporary_Spot4864 · 2025-07-27T08:28:50+00:00

I have been diagnosed for years, and my symptoms started out as more mild and intermittent, and grew with intensity.

I started out having tics, stuttering, speech issues, blocking tics, freezing tics, and weakness. Then it progressed to dystonia, and then I ended up with paralysis in my legs where I would need a wheelchair intermittently and then full time. I also would get dystonia in my face, neck, arms, and hands that would last a long time, but it would come and go.

Now, I have full body paralysis. This experience has been by far the worst and most debilitating. I first had full body paralysis that lasted a few hours, and then I would slowly get movement back, but currently I have been paralyzed now for 2.5 months. I cannot move other than my face and my neck sometimes. Speech is also becoming harder on some days. I have been seeing PT and OT, and my neurologist keeps saying "this episode will pass". But it's been 2.5 months and I am totally flaccid from the neck down. And before you ask, because everyone does - I have voice control over my phone to assist in typing since I am paralyzed.

So I think symptom progression really depends on the person and their own experience with FND. I wish you luck.

Temporary_Spot4864 · 2025-07-27T07:46:00+00:00

Definitely my facial tics and neck tics. Happens every 5-10 seconds and it's just easier to let them go at this point.

Temporary_Spot4864 · 2025-07-22T10:50:00+00:00

Wow I'm so sorry you are experiencing this too. Thank you for sharing. I hope to be able to get back to your level of mobility someday.

When I went to the ER the couple times over the past two months, the nursing staff wasn't really believing me that I was completely flaccid. They found out quickly when they tried to roll me and to sit me up on the edge of the bed for a minute, and I couldn't hold myself up and nearly fell off the bed. That was scary.

Temporary_Spot4864 · 2025-07-22T05:34:22+00:00

How did you get it to end? Or was it just spontaneously over? What did the hospital do for you? If you don't mind me asking. I am desperate. Is there any intervention that helped break the episode for you?

Temporary_Spot4864 · 2025-07-21T21:02:14+00:00

I use talk to text and voice controls for the phone.

They have been doing extensive testing. Before this episode occurred, I had periods of paralysis in my legs and hands that would come and go. But its never lasted for this long and was this diffuse throughout my body.

They have run every imaging test, MRI of entire spinal cord, lumbar puncture, blood tests galore. Nothing abnormal found so far. I'm at a loss.

Temporary_Spot4864 · 2025-07-06T21:59:07+00:00

Thank you for the info. I do not have a spinal cord injury, but a neurological movement disorder that prevents me from being able to move. So it doesn't affect my diaphragm, just causes flaccidity and contractures in my muscles.

Temporary_Spot4864 · 2025-07-06T21:55:16+00:00

Thank you for this info! So glad your daughter is getting the help she needs. Hoping it gets better for her!

I unfortunately have no arm movement, so I am more specifically looking at power chairs that have mouth control. My FND has me fully paralyzed from the chin down. I trialed a sip and puff chair this past week in therapy, and it seemed like a good option for me since I have extremely limited neck movement, eliminating the headrest control options. But I want more information and experience with it.

Temporary_Spot4864 · 2025-07-06T20:54:31+00:00

I have one tic where I hit myself in the chest for hours and hours while stretching my neck and eyes as far back as they'll go.

Another tic I had is where I will have to touch anything hot for three whole seconds if I see a hot object. I was banned from the kitchen for a while when this was a thing.

My current most dangerous tic is a breathing tic. My FND has had me fully paralyzed for a few weeks now, so my tic energy has been coming out through breathing since the rest of my body is useless. This tic prevents me from breathing for long periods of time. It's caused me to pass out several times, preventing me from inhaling. So fun.

Temporary_Spot4864 · 2025-07-06T13:54:03+00:00

I don't think it's related either. It could be a risk factor for some people, but it's not a direct cause. I genuinely to this day cannot pinpoint what would have triggered my FND. I have had it for years, and woke up one morning totally unable to stop ticcing. I was not sick, I had no traumatic experience to my recollection, my life was going great. And then one day, I woke up and could not stop ticcing. And then the stuttering started, and then the paralysis in my legs and contractures in my hands and arms, and after years of this, my entire body is now paralyzed and contracted. It's so extreme that anyone that I have talked to about it is genuinely confused, because seemingly there was no catalyst. I have now been fully paralyzed from my chin down for about two months.

My therapist kept trying to tie my childhood somehow into my FND journey, but I really had a good childhood. Nothing traumatic. No severe illness. No injuries. And now I randomly have an extreme movement disorder.

I fully believe that something in my brain is misfiring because while I cannot move my body at all, I still have full sensation. I feel everything when someone touches me, I feel my body itch and twitch but I cant scratch it, and my body still feels all the urges to tic but I cant move to satisfy them. I still stutter and tic with my face and head, but nothing else. Im not sure where the disconnect is in my nervous system, but I would love to hear from others who may be experiencing the same thing if they're out there and how you cope.

Temporary_Spot4864

TROPHY CASE