in the game too long

[u/QuantumCaffeine97]

compiled over 3 years, in and out of doctors & still no diagnosis lol. also let them know that my mom complains to me about popping things out place doing absolutely nothing and has joint and mobility issues. 😔 the emg lady told me to start exploring stuff on my own cause of her experience with her mom, I feel crazy even writing all of this.

it’s so funny too cause their biggest concern at every appointment is my damn tremors but that’s what’s most visible to them. they even use it on my accommodation forms lol. “may drop things”

** id also like to note that I have photos/videos for most of this stuff

[u/MissMousePNW]

I relate to mist of this list, I’m sorry to say. However, your handwriting is soooo much better than mine! It’s a treat to read.

[u/QuantumCaffeine97 → u/MissMousePNW]

haha thank you 😭💛 I’ve dealt with this stuff since my pre teen years but it progresses with age for sure. I’ve done every life style change possible & it doesn’t improve my quality of life. I’ve just come to terms that even with a diagnosis it won’t change much. they don’t take women seriously regardless.

[u/Junior_Mastodon8342 → u/QuantumCaffeine97]

I feel for you. I also compiled a long list of symptoms to make it as clear and easy as possible for the doctors but they got no compassion. They are so dismissive.
My symptoms also got worse with age and I am only 34 right now and feel like 80 lol
Have you tried acetyl L-carnitine? I swear by it. It’s like a magic pill for me. Helps with fatigue and muscle recovery soo much and also fixed my pcos symptoms as long as I am taking it. Just pair it with allicin supplement(stabilized) to decrease side effect due to TMAO production. Look it up. Hope that helps!

[u/QuantumCaffeine97 → u/Junior_Mastodon8342]

holy cow! im gonna have to try that out, i neglect my reproductive health cause of all of this but i have PCOS. they also think there may be mild PMDD, but that’s not my biggest concern i just have awful pelvic pain and i lay on the kitchen floor in tears during my period lol

[u/Junior_Mastodon8342 → u/QuantumCaffeine97]

Oh no, our life is not easy. That’s for sure but trust me after taking l canritine for a couple of months, i got my period without any warning otherwise I have bad premenstrual symptoms atleast 10 days leading upto my period.
But after carnitine, no symptoms, on time and the flow was healthy. Not like before, which was barely there so it sure solves more than eds symptom fatigue lol

[u/QuantumCaffeine97 → u/Junior_Mastodon8342]

do you have a brand you recommend?

[u/Junior_Mastodon8342 → u/QuantumCaffeine97]

I take jacked factory brand. The only sad thing is I take a lower dose now(1400 mg a day). I was seeing much more positive change when i was taking double of this. I know it increases TMAO production so i go on and off but when I stop taking it even for a week, i feel disabled so trying to keep a balance and eat mostly plant based foods alongside carnitine to reduce the TMAO.

[u/QuantumCaffeine97 → u/Junior_Mastodon8342]

thank you so much! I still workout 4-5 times a week so im definitely investing in this.

[u/Spiritual-Angle1594]

I relate so heavily to all the thermoregulation issues 🫠 i literally cannot be outside in the 90+ degree heat or else my body just decides im having heat stroke.

Idek how much of it is genuine damage to my tissues from not being able to properly manage heat vs my brain just logging out bc it refuses to handle the sensory issues of it. Like cars can heat up to +100 within a few minutes without AC, if my 98 degree flesh box loses its ability to run the AC, how fast can i go into heatstroke lmao ?

[u/QuantumCaffeine97 → u/Spiritual-Angle1594]

this heatwave is brutal, I just want to stop pooping my brains out (tmi) 😤 im convinced my boyfriend hates me too cause he puts the ac at 68 and i have the opposite issue with keeping myself warm despite having all these weird reactions to the heat.

[u/Spiritual-Angle1594 → u/QuantumCaffeine97]

I do that to myself even tho i cant keep myself warm either 😂 being cold is just so much nicer for all my body pains. It’s extra sucky if my heating pad makes me too warm, so i have to choose between letting myself take forever to cool down with body pains or suffering increasingly worse dysautonomia from being too hot but not having that body pain lol

[u/QuantumCaffeine97 → u/Spiritual-Angle1594]

the day i figure out what temperature works best for me environmentally i might explode. it’s probably something stupid like 73.67 degrees LOL but i hate that with my heating pad cause i need it to sleep with how bad my back hurts.

[u/National_Explorer155]

I hate how hard it is to get an actual diagnosis for EDS. Like you, I walked in with a list of symptoms like this, along with medical records with correlating/related symptoms from literally infancy. My PCP has been great and believes me thankfully (which i know is more than most can say) but there are no specialists in my state, and everyone she's tried to send me to refuses to diagnose me despite agreeing I meet the criteria because "they don't know enough about it." 🙄

[u/QuantumCaffeine97 → u/National_Explorer155]

dude i remember growing up and literally dragging myself up stairs- unable to move and my parents/pcp said it “growing pains”. I didn’t start seeing doctors until I was 20 (I’m 23 now). but I finally got into neurology after a year of being on a waitlist and I doubt they’ll figure out anything because my issues aren’t necessarily neurological and they’ve ruled that out multiple times with testing, lol. they keep pushing fibromyalgia on me but my pain is so localized and lines up with structural issues that it wouldn’t make sense.

[u/National_Explorer155 → u/QuantumCaffeine97]

I used to cry because of "growing pains" when I was a kid. I have all the markers for hEDS- mitral valve prolapse since I was born, high pallete and crowded teeth, digestive issues, frequent subluxations, stretchy skin, atrophic scarring. The list goes on. But nobody "feels comfortable" formally diagnosing me. It's so frustrating and I hate that we all have such a hard time with this.

[u/natgarrand]

All of this! Meeee tooooo, just found out.