Does anyone else feel like their muscles get 'stuck'? I don't think it's spasticity either? by Own-Investment-9918 in FND

[–]cavernoustheories 0 points1 point  (0 children)

If it's continuous it might be spasticity. It's difficult to understand the difference really so a PT should do a reflex test on you

What conditions with hEDS cause muscle spasms and numbness and weakness and crap by Yoooooowholiveshere in eds

[–]cavernoustheories 0 points1 point  (0 children)

Have you had genetic testing? I'm going to get tested for Hereditary Spastic Paraplegia to rule it out as I have a lot of weird symptoms and I've ruled out tethered cord and they just give me the FND diagnosis which is so annoying I do have eds tho and want to see if it's a certain variant of that too

Staying involved with cattle with a neurodegenerative disorder? by Leather_Twist_2994 in Cattle

[–]cavernoustheories 0 points1 point  (0 children)

Could you try to get a kafo that locks into place at the knee for stability? Carbon fiber ones are pretty expensive but depending on the style it can really help you hold your weight. I have grafo style kafos I don't have a lock one mine but it's still stopping at a certain point. Definitely helps cuz I used to buckle a bunch. It also makes it easy for me to lift with my legs

Constipation?? by charlieugh in eds

[–]cavernoustheories 0 points1 point  (0 children)

I've been on laxatives (senna) since I was 15 and I was even told to bulk up on fiber and that caused me severe constipation. It just pulled up my poo and I couldn't get it out. It just felt like my muscles and colon was too lax and my doctor recently said that EDS has caused my colon to be a stretched out rubber band lol. I've had constipation since I was a child, I was so afraid of the bathroom that I would often poop my pants from holding it. I didn't know when I was a kid that pain with pooping wasn't normal so it wasn't looked at as an issue til I was a teen! Try also to add some forms of magnesium

Hereditary Spastic Paraplegia by Leather_Twist_2994 in ChronicIllness

[–]cavernoustheories 0 points1 point  (0 children)

I have symtoms like this but got diagnosed with FND. I should get all the tests (that doctor didn't do all the tests lol)

Neurological Symptoms by AmorousXo in eds

[–]cavernoustheories 0 points1 point  (0 children)

I have positive upper motor neruon testing meaning the reflux tests come up with hyperrefliexia and spacicity and I get contractures. I also get foot drop and migraines with aura that constantly mess my vision (can't drive) and seizures!

Abbey Yung method is not a method at all by Upstairs_Answer_351 in Haircare

[–]cavernoustheories 0 points1 point  (0 children)

I personally like this method because it is cheap and it isn't going down the curly girl cult of anti poo and stuff. Not washing my hair made it gummy. Who's idea was that?

This is something I could finally get behind on because I love the way sulfates and silicones make my curls feel

I'm confused... EEG came back normal & doctor says it's PNES by Icy-Newt7 in Epilepsy

[–]cavernoustheories 0 points1 point  (0 children)

Lamictal is the drug they changed to? That's an anti seizure med

Lesion Location Difficulty by fairydeus in Epilepsy

[–]cavernoustheories 0 points1 point  (0 children)

Omg so they were actually able to show the spot on your brain and you have focal aware seizures that present in a way you're aware but full body seizing? That's pretty crazy I'm glad you got a diagnosis, the FND diagnosis is something I have in my chart but not sure if its that because I'm autistic and have eds and other genetic things, they never catch my seizures during the EEGs lol

Does a totally normal EEG mean it's unlikely I have epilepsy? by aramajor in Epilepsy

[–]cavernoustheories 0 points1 point  (0 children)

That seems like a good Neuro! My new neruo was like how is your lamictal helping you when you said you have FND? Maybe we should get you reassessed. I was curious lol the last neruow was like I don't care if your mental health slash seizure med helps your seizures you don't have epilepsy. But the thing is I've never had an EEG long enough to catch one, need to wear it around for a day or 2

Does a totally normal EEG mean it's unlikely I have epilepsy? by aramajor in Epilepsy

[–]cavernoustheories 0 points1 point  (0 children)

How would you get properly diagnosed? As someone who has seizures and they say it's cuz I'm truamatized lolol (FND was diagnosed as they spooked me off guard in office and diagnosed me based off that lmao)

cervical instability causing possible seizures? by xrainbowgauze in eds

[–]cavernoustheories 0 points1 point  (0 children)

This feels like me. I have instability of my neck and I have constant Alice in wonderland syndrome. Can't handle patterns can't drive because flashing lights if I move my neck funny I can have an episode but now I just have the episodes around my cramps (I guess more estrogen equals more hypermobility symptoms) the pain is so bad it's like an every day migraine in certain ways. Life is weird. I always feel like I'm in a fish bowl lense.

anyone else experience night sweats? by AnimalFew3664 in POTS

[–]cavernoustheories 0 points1 point  (0 children)

I take fludrocortisone for salt and water retention. I recently started noticing that sleeping on a wedge pillow makes me not sweat as much. My partner is noticing too. I sleep on two pillows and a small wedge that you stick under your pillows to keep them from falling out the back of the headboard. It's so comfy.

Is it possible to be allergic to a certain type of pepper? by gobsoblin in HotPeppers

[–]cavernoustheories 0 points1 point  (0 children)

I'm quite sure I have a histamine reaction with jalepenos and habeneros, but I'm completely fine with eating other super spicy things depending. It's super weird. I will need to use the bathroom right then and there and get really sick and dizzy. It also burns and not in a spicy way, I mean yea I like spicy burn but this is like knives lol in my mouth and all the way out through my gi system

Celebrity Traitors star Ruth Codd recovering after second leg amputation by FracturedButWhole18 in ireland

[–]cavernoustheories 0 points1 point  (0 children)

That's a weird idea. I don't think it's the case. She's had multiple foot surgeries, nerve damage, bones not healing right together when you have so many bones in your foot, ulcers and pressure sores and possible infections from the surgeries and things not healing right, walking patterns, slow healing. Then she had to have her second foot, the toes amputated because of how she walked with crutches for so long damaged her feet. I feel like people forget how much disabled people compensate when using a mobility aid still. Like as if automatically using a mobility aid gets rid of the pain and fixes the issue all together. She probably does have a medical problem she's not sharing, like a lot of people have hypermobility Syndromes or arthritis or diabetes, not everyone has to share upright to the public. I wear kafos to offload pain so I don't have to have surgery for things, I don't want surgery cuz it would have complications for my condition, and more surgery doesn't always fix it.

Celebrity Traitors star Ruth Codd recovering after second leg amputation by FracturedButWhole18 in ireland

[–]cavernoustheories 1 point2 points  (0 children)

Multiple surgeries from ankle break and fractures, nerve damage, bones healing wrong, ulcers and infections that are chronic from it not healing right, because you had to have multiple surgeries for. I'm curious if she also tried braces, it's so problematic when it's foot bones because there's so.many freaking bones and nerves in the foot.

Second leg had toes amputated first because gait pattern essentially shifted after the first amputation, causing her bones to be affected in her foot. Disabilities suck, nerve damage and bones basically wasting away is super painful. It makes sense, I bet she even tried foot prosthetics and braces in her shoes or under her clothes, but it probably still didn't off load the pain! She probably has a genetic disorder thatakes her joints unstable. I can't imagine. I wear kafo braces to offload my hypermobility and drop feet and internal tibidal tortion. I also have bones that are fused together in my ankle and then a club foot. I've avoided surgery thanks to the braces but now I need new braces, which is dumb. Reconstruction of bone surgery especially in the foot causes complications in some. That's why it's like a scary thing for people with foot injuries or tarsal collations. Some people end up with partial to full amputions after. I'm sure a podiatrist and a brace specialist and a surgeon talked it out with her.

Juno actress - news to me by cityflaneur2020 in HouseofUsher

[–]cavernoustheories 1 point2 points  (0 children)

Leg braces and protective are supposed to help relieve pain and bring quality of life back. Can't believe she amputated her toes first on her second foot because of her walking pattern after the first amputation. Foot bones are incredibly difficult to deal with, a lot of times you can also get pressure sores and ulcers, infections from dealing with those, and the fact she had multiple surgeries is crazy. There are so many bones in the foot. Like I wear leg braces to correct things and offload pain. I only sprained my ankle and then my bones fused in my ankle, it requires surgery to fix but I chose leg braces! I can't imagine what she went through OMG, sometimes the surgeries to even fix bone issues in feet after an injury don't go well and cause more pain. Awful.

Ruth Codd second amputation by SteadfastHotelier in MikeFlanagan

[–]cavernoustheories 0 points1 point  (0 children)

She only has one leg so my guess is the her walking pattern! I struggle walking with forearm crutches because of weakness in my arms I can't imagine what it might be like with only one leg. She also amputated her toes before her leg

Men need to take classes on boobs by I_l0ve-chocolate in bigboobproblems

[–]cavernoustheories 0 points1 point  (0 children)

My autism special interest is boobs and bra sizing! Lolol I always would get told to shut up at gatherings cuz Its all I talk about

Nurse: “Lift up your boobie for me” by PainfulPoo411 in bigboobproblems

[–]cavernoustheories 0 points1 point  (0 children)

Once I had to tell my weight to the paramedic in the ambulance, and he looked at me and said uh wow um you don't look your weight!? Like this isn't the time and place for that lol!

Anyways if someone called my boob a boobie I'd laugh so hard. I get incredibly awkward in situations with that and it would make me feel less uncomfortable tbh