u/Shiralf

i’ve been having health issues for months and nobody had been able to figure out what was going on. finally, doc ordered an echo which came back with severe aortic insufficiency. got sent to the ER and admitted and now i’m gonna have valve replacement in a couple days. they still don’t know if it’s echocarditis but saying i have signs of it. i turn 25 in 12 hours man. obviously im sad about being in the hospital on my birthday but also scared. i really didn’t see any of this coming. i’m hoping to hear from any other young adults who have been through this. how did you cope? what made you smile? what was recovery like?

EDIT: thank you all SO much. i did not expect to hear from so many people. i’ve managed to calm down a little over the course of the day. yalls words of encouragement have been a huge help and im so glad i posted this. ❤️❤️

I'm going through the "what is causing all these symptoms" journey. I have hEDS, but over the past year my health has been rapidly declining.

The most impeding symptoms: POTS-like tachachardia, feeling drunk and off-balance all the time, crushing fatigue, and DAY SWEATING with literally ANY level of physical exertion (ex: walking to the mailbox) I also have nerve pain, painless swollen lymph nodes, and recently some minor muscle issues.

My question is for those diagnosed: what did you suspect before Lyme, and what finally lead you in the "right" direction? What were the symptoms that prompted your journey? Anyone with any similar symptoms. So far ive suspected SFN, POTS, a CFS leak, lymphoma, and cushings syndrome. Disclaimer: looking to be diagnosed, just hoping for a little hope. Thank you

24/F. i had mono last november. pretty standard run of it i think. i was knocked out pretty bad for a bit but was able to return to work pretty quickly. i’ve had some chronic symptoms for years (suspected hypermobile ehlers danlos) and when i got that positive ebv result i just had this sinking feeling that it was really gonna hit me hard long term.

over the past 9 months, i have experienced a steady decline of my physical health. the following are a list of what we suspect to be neurological/autonomic symptoms i’m currently in the process of trying to diagnose:

1. extreme fatigue. like i can sleep 12 hours and wake up ready for a nap
2. intense sweating with physical exertion of any kind, mostly in my upper body
3. dizziness, lightheadedness, and vision changes
4. sharp pains throughout my body
5. pressure in my head and ears
6. general joint pain and muscle weakness

like i said, im not trying to seek diagnosis. mainly, im curious if anyone else has had a similar experience of either chronic illness onset or extreme worsening post mono infection. thanks in advance and stay strong, yall.

24F in the process of trying to figure out ~all of my chronic symptoms~ which have been present for years but were dramatically exacerbated post-mono. my primary highly suspects heds, but acknowledges there’s a missing piece and i just feel so lost and exhausted. the most difficult symptoms have been lightheadedness, extreme fatigue and intense sweating with literally any physical exertion.

this past week i started noticing more intermittent small stabbing pains all over my body and suddenly i was like wait… could this be nerve related?? Then I kinda started to put together other things- my legs get cold even when the rest of me is warm, i’ve been waking up in the middle of the night with crazy numbness and tingling in my arms etc

i dont want to be presumptuous about what’s going on with me but i was hoping to get some advice on like… first steps now that i suspect this. i really appreciate any help or insight.

thank you!!

several months ago i started experiencing crazy pressure in my head every time i propped my head up after lying down, shortly after being sick. around the same time, i started having what i assumed to be sinus pressure, but that was never accompanied by mucus. these symptoms were mild enough that i brushed them to the side, but after getting sick again this past month, they’ve gotten much worse. i work a food service job, and being on my feet has been so very difficult. i feel dizzy and off kilter and once im on my feet for more than an hour or so the pressure in my ears gets to bad it feels like my skull is being squeezed and my neck starts to ache. i have also noticed some leaking from my nose. i have suspected heds, but it’s not formally diagnosed. i dont want to go into my initial pcp appointment sounding crazy for suspecting something so severe, but i’ve been feeling so awful and have a gut feeling there’s something really wrong. does anyone here have experience bringing up a possible cfs leak and being taken seriously? how did you bring it up?

thanks so much

i’m 24 and i’m quite certain i have heds. i meet clinical diagnostic criteria and have had doctors suspect it in the past. telltale signs: hypermobile, stretchy soft skin, baby face, party trick kid, joint instability etc. ever since having mono last november my health has been worse than it’s ever been: fatigue, postural dizziness, knee and foot pain, exercise intolerance , frequent illness. i don’t wanna go on with every single symptom i have but i FINALLY have gotten it together to set up a PCP intake in my new city and i don’t wanna just bombard them with a list of symptoms but i know that i need to advocate for myself a little. i guess my question is: has anyone with suspected heds had success with suggesting it to a provider and actually being taken seriously? does anyone have any advice on how to prepare for an appointment? i also have ocd and autism in my medical records so im worried about not being taken seriously on account of these things especially. thanks so much in advance.