Juno

I have FND and hEDS. Normally my FND just presents as seizures, which sucks, but is manageable enough. My hEDS has caused a bulging disk on my L5-S1 joint in my back. It has swelling visible from the outside. I do not have sciatic nerve pain, but my SI joint is my most frequently dislocated.

Four or five days ago, I had a seizure cluster and took my emergency medication - .5mg of Ativan. I don’t take this medication often, maybe 3-5 times a month. When I woke up from my post-ictal stage, my legs felt different. Bad.

When I tried to stand, I had tremors in both knees. Then the bone pain started. As if someone was driving a wedge into the back of my femur with a hammer. It wasn’t constant, but when it happened all I could do was hug my leg and focus on breathing.

Two or three days ago, I went to the ER. They treated me like an addict in withdrawal, and gave me 2mg - four times my normal dose - of Ativan. They then sent me home without seeing if it helped the tremors at all. They completely disregarded the bone pain.

When I woke up from the four hour medication nap, the tremors were still there, and the wedge had turned into a drill saw.

One or two days ago, I saw my physical therapist. He put my SI joint back in place. But the tremors and pain persist. I went to a different Urgent Care. They gave me a shot of Toradol, which did nothing. They prescribed me steroids to try to help with the pain. I am concerned to take steroids because they can make my pre-existing neurological conditions worse. When I expressed this concern, my support person said, “I thought you wanted help.”

Today, the pain has spread to my whole right leg. Every time I move it feels like my leg will give out from under me. Pain and discomfort shoot through my bones at a steady enough pace that I cannot cry, but I cannot move.

-Hypermobility/poor connective tissue impacts the whole body.

-The nervous system (responsible for communication between the brain and body) is made of connective tissue.

-A malfunctioning nervous system is Functional Neurological Disorder.

-Hypermobility is a stronger indicator of FND than depression, anxiety, and PTSD.

-If the nervous system, which has a poor connection do to poor connective tissue, does not send or receive signals correctly, that is Functional Neurological Disorder.

-Many cases of FND are single presentation.

-There are positive tests for FND.

Are hard to answer, because if you’re asking the general population of tourettics, the answer to most questions will be “sometimes, some people.”

Can you suppress?

Sometimes, some people can.

Do you tic in your sleep?

Sometimes, some people do.

Do you have swearing tics?

Sometimes, some people can.

Do you tic during intimacy?

Sometimes, some people do.

Do you want a cure for tourettes?

Sometimes, some people do.

Just for fun/boredom! Also posted on reddit.

1) Most embarrassing tic?

2) Most common tic?

3) Do you get symptoms other than tics? (Ex. Rage attacks, impulsivity, obsessions, sensory processing differences)

4) What does your premonitory urge feel like? Do you have one?

5) Funniest tic?

6) Most painful tic?

7) Hobbies/things that calm tics?

8) Tic triggers?

9) Most stupid assumption you’ve heard?

I have autism lvl 2, unspecified EDS, functional seizures, tourettes, OCD, and more. I also identified as trans for 9 years and have been detransitioning for about 10 months.

Lately, most of my disorders have been well managed. I’m still having symptoms, but I don’t feel as out of control anymore. But my OCD has been making it impossible to actually feel good about any of it.

I want to feel good about my mom helping me (autism and seizures) and the house, but instead I feel like a leech, or that she’s only doing it out of guilt/obligation. I want to feel good about my detransition, but I can only worry that I’m wrong (again) (also I’m not stressed about being trans, I’m stressed about never being true to myself). I want to feel good about my new(ish) dog, but I can only think of losing control and hurting her, or her death. I want to unmask my voice, but I compulsively practice a “good” rhythm. It tells me I’m faking my disorders, and compels me to trigger them to “prove” whether they’re real or not. It tells me I’ll never be happy as either gender, that I’ll never be authentic. It compels me to check my body for discomfort. It compels me to obsessively research and cross reference my feelings with other people.

I feel like I don’t know who I am and I obsess over it. Masking my autism feels like a compulsion. I obsess over every thought, action, phrase, and check if they’re okay, if they’re normal, if they’re true to myself. I feel all eyes on me, even when I’m alone, that judge me and critique me for everything I do. Invisible people policing how I act.

My therapist and I talked about how people with ADHD will develop anxiety disorders because the brain learns it can’t depend on dopamine to get things done, so it creates extra cortisol/adrenaline to get things done. I think I developed OCD to mask my autism. I’m currently on a mood stabilizer which does NOTHING for OCD and I’m thinking of switching to an SNRI/SSRI. I’ve been in therapy for years. years and years. When I first tried an SNRI/SSRI it made my OCD/Tourettes worse and I got premonitory urges to SH. I was in and out of the mental hospital 3 times. Decided I’d just deal with the OCD without meds. But now it feels like the one thing keeping me from joy.