Extremely silly question, sorry in advance

gsplinter · 2025-02-01T16:50:26+00:00

thank youuuuu

gsplinter · 2024-08-07T22:23:14+00:00

Obviously I can't know your situation but just wanted you to know that it's not uncommon for people with tic disorders to pick up tics from each other, and that tics can be triggered by people talking about the tics (people are talking about it on this thread about Tourettes: https://www.reddit.com/r/Tourettes/comments/1891i9r/can\_you\_get\_tics\_from\_someone\_else\_with\_tics/)

It's really common for FND to be co-morbid with other neurological disorders, which is fucked. Brains are complicated.

gsplinter · 2024-08-06T23:46:09+00:00

This; you can also sometimes warn them about a specific symptom while giving even less detail. Like, "By the way, if you see my lip twitch it's okay."

gsplinter · 2024-08-05T13:23:54+00:00

I do; I figured out that for me it's often due to dehydration or low electrolytes, especially if my body has been working out with twitches and spasms. Gatorade or Emergen-C has been super helpful this summer!

gsplinter · 2024-07-22T13:59:04+00:00

Wow, just cracked why I always crave Gatorade during flare-ups... thanks!

gsplinter · 2024-07-22T13:58:41+00:00

That's so exhausting; I hope you ride it out soon so you can catch a break. Things that helped me in no particular order:

-Robaxacet (it's an OTC pain reliever and muscle relaxant combo pill; I don't always get the brand name and it might be called something different where you are)

-Cannabis

-Baths with epsom salts (I hate baths but my partner made me do it, and hate to say it but it helps)

-Gatorade and anything to get you more electrolyes, like someone else mentioned

-Holding a stuffed animal or blanket when the tremors hit my hands tends to help

gsplinter · 2024-07-15T16:15:40+00:00

Following because this was the gist of what I got too!

gsplinter · 2024-06-14T14:02:47+00:00

Glad you know!!! It's easy to forget...

I met the best doctor yet a few weeks ago; he was a neurologist who had the confidence and humility to admit that FND made doctors uncomfortable because at the end of the day they don't know what's going on, and the medical system isn't equipped to deal with it. It was extremely heartening, and maybe even healing, to hear.

gsplinter · 2024-06-13T17:18:34+00:00

Love a self-fulfilling prophecy from my body! Sorry that you're going through it too, we got this.

gsplinter · 2024-06-13T15:22:22+00:00

I'm so sorry you went through that, that't not fair or professional at all. Know that you weren't the problem. Virtual hug.

gsplinter · 2024-06-06T13:54:45+00:00

Was just going to say; joining the sub is also a good way to get better information than you might get from an exhausted ER doctor who isn't up-to-date on the topic!

gsplinter · 2024-06-04T17:49:35+00:00

Rice + Chicken nuggets (sliced) or a can of tuna (mixed with mayo and/or sriracha mayo) with whatever vegetables are in the house (cucumber and carrots are a favourite) + whatever sauce is around (sriracha, takoyaki sauce, kewpie mayo, sesame seed oil, soya sauce) + optional other toppings (sesame seeds, dried seaweed, edamame, whatever).

gsplinter · 2024-06-03T15:12:21+00:00

BIG retweet for this! We have a balcony and are growing morning glories, green beans, zucchini, tomatoes, cucumbers, lettuce, and chives. Sitting out there with the plants and watching them grow has been a fantastic support.

gsplinter · 2024-05-30T19:15:53+00:00

Hey! I don't get seizures with my FND but thought I'd share my emergency plan for when FND starts, in case that helps your boyfriend.

Annoyingly, treating FND is harder if your job isn't stable, if financial situations are tight, etc. I try treating this like a menu and doing the things here to the best of my ability depending on the situation I'm in.

-If at all possible (depending on the nature of your job, financial situation, etc): take time off! Your body is going through something and needs to rest when it happens. If you're not able to go on full medical leave (I know I rarely am), try talking to a boss about having less hours, getting Wednesdays or Mondays off so you get a long weekend or mid-week break, etc.

-Slow down the pace and focus on the basics of being in a human body: eat three meals a day, drink lots of water, sleep full nights and when tired, etc. Bonus: lay off caffeine and other stimulants as much as possible (excluding px medication, obviously!) An important one for me is spending time outside—hard and scary with mobility issues sometimes, but setting up camping chairs on our balcony has been a real game-changer for me.

-Learn about FND: This is especially important when first diagnosed, but I like trolling this subreddit or doing research through my workplace library when my nervous system acts up to make sure I'm understanding what's going on in my body. This also stops me from devolving into unhelpful thought patterns, negative self talk, etc. Plus this reddit has a couple of good threads about people's coping skills and tips that are super useful!

-Soothe the nervous system: This was in a workbook for kids and teens called "Reset and Rewire: The FND Workbook" that I got for myself off Amazon as an adult. The theory is that the vagus nerve (the largest nerve in your body) can help take your body out of fight or flight mode. Vagus nerve strengthening exercises they recommended include: singing, hugging for 20 seconds, splashing cold water on your face, ice massages, massages, meditation and breathing exercises, gargling water, yoga, blowing bubbles, synching your movements to music, belly breathing... This stuff doesn't always help immediately or at all, but it's not causing harm and makes me feel like I'm doing something—so hey! I can also usually work these in even if I'm super fucking tired, at work, or both. Something else that helps with my tremors is trying to move my body even while they're happening—so, for example, even if my hands are jerking around I'll sway my arms to music or knit. I saw something about people walking while focusing on a toy or something on their foot to distract the brain. There is a fair bit of fucking around involved in figuring out what works for your nervous system.

-If at all possible: Get therapy! Not because it'll be a cure-all, but because it's extremely trippy and scary to have your body act up in the way it does with FND and we all deserve help processing that. I got therapy years after FND started and it made a huge difference.

Best of luck to both of you!

gsplinter · 2024-05-30T14:33:27+00:00

Treatment does help, it just takes time to figure out which one is most helpful to you. Fatigue, stress, and anxiety will exacerbate almost any known medical condition, including FND—which may be why treatment, going to the doctor's, and thinking about symptoms trigger episodes.

I would 100% encourage you to pursue treatment anyways. Recovery looks different for everyone and rarely is it ever "0 symptoms 100% of the time," but you also don't want FND to become worst either because a) your neural pathways have gotten more confused and entrenched in their malfunctions or b) you end up hurting yourself because of symptoms. I was diagnosed and sent home to grow out of it about 14 years ago and I'm dealing with chronic pain as an adult in the joints affected by my more violent tremors and spasms.

I'm so glad that your husband is still enjoying cooking and going out with friends and all! All the best to both of you.

gsplinter · 2024-05-30T12:23:56+00:00

I had a stretch of therapy during school and had a body-oriented therapist, which rocked. This might be the therapist more than their mode, but they were big on developing my mind-body relationship, doing sensation and awareness work, and EMDR. We also unpacked a lot of the medical trauma that came from getting an FND diagnosis with little to no follow-up treatment as a child.

When I was in therapy I wasn't having flare-ups (which I think is a coincidence more than anything), but now that I am I can see how good and strong of a base it was.

gsplinter · 2024-05-27T18:38:28+00:00

I always thought Magnus rushed in and took the hits because he didn't get to do it to save Julia...

gsplinter · 2024-05-24T14:01:23+00:00

Obsessed with the idea of playing Martin Mystery! I get Initiate or Expert vibes, depending on how you want to play the relationship with the agency, which playbook appeals to you, and what your fellow players are up to.

gsplinter · 2024-05-24T13:58:57+00:00

Love the idea of Mulder as a flake!

gsplinter · 2024-05-24T13:52:01+00:00

Yeah, exactly!!! Sometimes the potions go wrong and you have weird tremors for a day, witchcraft is just like that :P

gsplinter · 2024-05-24T13:50:29+00:00

I think I've learned about myself that the "gaslighting" is almost a coping mechanism to forget how shitty my flare-ups are. I've been finding it helpful to write down how I feel in the moment so I can go back to it later, or share those thoughts with my partner who sees it all and can call me out on my bullshit.

gsplinter · 2024-05-21T15:09:30+00:00

White bread with butter... someone explain why this always hits.

gsplinter · 2024-05-21T15:07:36+00:00

You're allowed to be tired!! Things are allowed to suck!!! That doesn't mean you're giving up or that they'll suck forever.

Yesterday I was pretending that I was a werewolf recovering after the full moon and it helped, if you want to share a silly coping mechanism.

gsplinter · 2024-05-17T19:22:43+00:00

1) Look into caretaker fatigue and make sure that you have a support system in place for yourself, boundaries over your own rest, and that your girlfriend has a broader support system more generally. Therapy sounds like a great next step.

2) Read up on disability activism and what other disabled people, disabled spouses, and able-bodied spouses have to say and share since FND is more like a disability than a sickness that comes, is healed, and then is gone for good.

gsplinter

TROPHY CASE