New undiagnosed spoonie here. I suffer from all kinds of symptoms.. neurological, gastrointestinal, musculoskeletal.. literally everything. I’m nervous I’m making it up in my head.
If anyone wants to try to play doctor go ahead.. esp if you have similar symptoms to mine and you’re diagnosed -
All Possible Ailments
Background:
16 y/o 160lb female with precocious puberty and short stature (4’11). Started developing breasts at 7 y/o, started menstrual cycle at 9 y/o. Suffered from heavy menstrual bleeding, ovarian cysts, and an enlarged uterus before prescribed birth control. Diagnosed with asthma and allergies to cats, dogs, horses, beef, pork, lamb, walnut & pecan trees. Has always been sick as a child due to preexisting conditions but caught the flu and strep back to back 5+ months ago and never got better. Many labs have been done & most come back completely normal. I made this document in hopes of finding out what’s wrong, because something is really wrong.
All Symptoms: Greatest —> Least Bothersome
Severe Fatigue
General feeling of malaise and extreme discomfort
Trouble walking for 20+ minutes
Trouble standing for long
Pre-syncope symptoms after standing (sometimes)
Joint pain (commonly in knees, ankles, toes, and wrists/knuckles)
Extremely sensitive to sound - will cry
Hot flashes (especially when doing any psychical activity) and always sweating
Joints feel unstable, making it harder to walk
Urinating and having fecal leakage without feeling or realizing it
Brain fog, trouble remembering some things
Heat intolerance
Excessive sleepiness
Excessive weight gain despite decreased appetite
Extreme muscle soreness after overdoing it (sometimes delayed muscle pain)
Headaches & Migraines
Back & hips start to hurt after standing for so long
Thrashing, kicking, and crying in sleep (I once called someone in my contacts list two times in my sleep, and I’m not even friends with her anymore)
Constant switch between constipation & diarrhea (sometimes both)
Horribly painful abdominal cramps before having to defecate
Anal bleeding: bright red blood after bowel movement, sometimes a concerning amount & prolonged without pain
Extreme bloating after eating (sometimes to where breathing is a task or painful - less common now due to my decreased appetite)
Nauseous after eating
Easy Bruising
Purple/pink, wide stretch marks from rapid weight gain
*I’ve been told that since my symptoms are multi-systemic that it’s likely I have more than one condition afflicting me.
Edit: Tests that have been done:
The basic tests : vitamin levels and stuff - only vitamin D is low
ANA - neg
CRP - high
Full thyroid panel - clear
Full hormone panel - clear, except there’s little to no estrogen in my body & I had high cortisol
UC - neg
CT of abdomen (looking for kidney stones) - clear
MRI (of my brain) - no results yet
I went to the hospital once and they took a lot of blood from me and everything came back clear, not sure what they tested but it was about every common-ish thing probably. They just told me I had post-viral fatigue syndrome. 🙄
What I think might be wrong :
Cushing’s Syndrome
HSD
hEDS
POTS
GI Dysmobility
Narcolepsy
SIBO
IBS
Pelvic Floor Weakness
Pelvic Prolapse
+ Probably more Im just not thinking about
Im very desperate for any answers. Even if your opinion isn’t professional I’d greatly appreciate it. Also, if you know of any accommodations that could make my life easier please share. 🙏 I’m currently homebound from school and I have to do PT. My girlfriend misses when we could do things and go out places. I can’t even walk without pain during/after and extreme discomfort. 💔














