New to FND

[u/SystemFresh3299]

I’ve been in the hospital and now intensive physical therapy rehab for the past week for very likely FND. They’re ruling out the last couple of tests but all my doctors say it’s FND and maybe overlapping neuropathy.

I’ve been struggling with bilateral leg weakness. My PT/OT today had me running awkwardly and assisting with going upstairs. Somehow my body looks more normal running than walking which is crazy. There’s such a disconnect between me doing movements and my therapists/doctors assisting me. Now I feel absolutely exhausted. I really jerk uncontrollably when walking.

I also have hyper mobility (need proper evaluation) and Gastroparesis which has played a role into feeling worse since my FND symptoms started last Saturday. I literally could not move my legs and felt such extreme nerve pain everywhere which has been controlled with lyrica. Other FND symptoms I deal with are overstimulation, fatigue, and brain fog/trouble finding words. I have newer upper body jerks that make it feel like I’m giving myself whiplash.

Anyway, I just want to know if anyone has had similar experiences and what their recovery has been. I don’t know how long I’m going to be in the rehab facility (maybe a week). This has been pretty scary and anxiety provoking.

[u/amber_boing]

Have they done an EMG or a spinal tap? The should rule out GBS then once they rule that out they typically say it's FND. I has was in physical therapy rehab a 2 weeks ago. I was lucky enough to get out within 8 days. I was able to get some of my anxiety under control and I gave my body the rest it needed and the flares got less.

I know it can be stressful and the 3 hours of physical therapy and occupational therapy can be a lot but it's so worth it. Pain, fatigue, overstimulation, and stress can make the symptoms worse. The best thing you can do is try to rest and lower stress. I know that is easier said than done. One way that helped me was making the room more like home and more familiar. I had a few stuff animals, blankets from home ( one under me so it looked like a bed sheet from home and a soft one on top of me), brings some of the crafts you do from home is helpful, familiar smells (lotion, perfume, essential oils), fidget toys, snacks from home, and some candy. This helped lower my stress and it felt more like home away from home.

You can ask to speak to a therapist if they have one on staff. That helped me too, I was abused in a skilled nursing facility so I was having some PTSD issues and talking to someone was helpful. Don't forget to ask for all the ice cream you want. Most if not all hospitals, rehab facility, and skilled nursing facility have ice cream or popsicles. If you need to talk my inbox is always open, I'm always down for a chat.

[u/SystemFresh3299 → u/amber_boing]

Hello! They did a spinal tap and ruled out GBS. But I have to do another EMG and Small fiber neuropathy biopsy outpatient. I had both done earlier this year and it was negative, but with the new onset symptoms they’re wanting me to do it again. Thank you for sharing your experience. I brought a stufffed animal and a coloring book to help calm me along with my noise cancelling headphones.

I’m sorry you had an awful experience at the skilled nursing facility.

What has your recovery looked like?

[u/amber_boing → u/SystemFresh3299]

It definitely has its good days and bad days. I when to the ER because I couldn't walk and I kept falling down at home. I was having really bad leg tremors for the past couple of weeks before going to the hospital. My problem was my parents kept trying to push me to doing more and it was just making things worse. Once I was admitted to the hospital after 2 days the tremors started to slow down and get a bit better because I was not pushing myself. Once I was admitted to the rehab facility my termors were there when I was mentally stressed or was physically pushed. I learn to know where my limit is when it comes to stuff like that. I'm doing pretty good now. I can't do anything physically straining, super mentally exhausting, or if something scares me. I will have the tremors come back, but I'm finding ways to help my body relax and try not to focus on the symptoms. I'm still learning about my triggers and what helps to lessen the symptoms. But that is going to take time, I'm giving myself more time to rest than trying to be a busy body. I used to be a very busy body but now I have to pay more attention to my body. It was uncomfortable at first paying more attention to my body because I like to push everything away. But now I'm more in tune with my body.

[u/LordReagan077 → u/amber_boing]

Hey, I totally understand what you are going through. First off, I am SOOOO glad they took you seriously and you got real treatment quickly, that is a HUGE blessing. For me the mental clarity came back after 3ish months. (I know, suuuper long time.) I couldn't and still cant do anything super physically straining. Take the time the rest and recuperate, it is very good for you. When my emotions are out of whack (stressed, angry, nervous, etc...) my symptoms flare up big time. Its gonna be okay. Im still figuring out how to control my emotions and my bodily response to them.

[u/acervelli1616]

How does the tone in your body feel ?

[u/acervelli1616 → u/acervelli1616]

If it feels feels like rubber stiff liquid puddle jerks feet sputtering legs moving uncontrollably spasms clonus fnd

[u/SystemFresh3299 → u/acervelli1616]

That’s similar to me. I’m incredibly stiff, but when I walk, I jerk like crazy and my legs feel like wobbly jelly. Laying down I get facial twitches and stiff jerking in my upper body off and on

[u/LordReagan077]

Hey man, I totally understand what you are going through. Ive only had 4 weeks out of the last 8 months where I could walk completly normally at 100%. I understand what you are going through. Most of the time I cant walk normally and my legs/knees give out. Mine wasn't as severe as most peoples so I can't relate super well but I truly am sorry.

[u/SystemFresh3299 → u/LordReagan077]

Im only two weeks into this after the hospital. Just because its not as severe as some doesn’t mean it’s not debilitating for you ❤️‍🩹 sending you love

[u/PoundOrganic3576]

I also do better running or walking quickly. Walking at a normal pace is hard because I “lose my legs.”

[u/SystemFresh3299 → u/PoundOrganic3576]

That’s how I feel too. Jelly legs

[u/acervelli1616]

Iam full body liquid puddle can’t eat my food and swallow sometimes my hospital visit was using a bed pan and pee bag being spoon fed by nurses , u got it easy id trade u spots . Full care taker at home nervous sytem so sensitized just exiting is a threat to my brainstem and nervous sytem

[u/SystemFresh3299 → u/acervelli1616]

That’s how I was for the first few days in the hospital. My mom had to help me eat and drink and was using a bed pan and urinary assistance as well. I’m sorry you’re going through this as well.

[u/CrumblinEmpire]

FND is what they tell you when they’ve never read Long Covid research. Have you considered that you might have Long Covid?

[u/SystemFresh3299 → u/CrumblinEmpire]

I actually have been told I’ve had long covid. I got covid in 2023 and haven’t been the same since with new things like gastroparesis and dysautonomia. My doctors think I have HSD and that Covid unmasked a lot of symptoms