u/liquidstress

What do I even do? Flare-up started in November and then hit its peak in mid-March. I was diagnosed in 2015 but I go into remission for years on end where it’s not gone but it is completely tolerable. Recent gastric emptying scan showed 35% at 4 hours. I have been seeing doctors. I am eating significantly more because I do not suffer from vomiting and I am scared. I’m trying to just force it regardless of pain/bloating/shortness of breath. I am grateful I am able to do that as I know some of you cannot. I eat as much as I can and some days, I even meet caloric goals. What is going on? How is it even possible for me to be losing this weight? What do I do?

EDIT: I have seen numerous doctors. Being advised by multiple to go to Columbia in NYC. No appointments available until next year there. I realize no one here can give me a diagnosis. I’m just desperate for any insight at all. Currently waiting on porphyria results.

25F, not sure what else to do. Here is a comprehensive list of all information. Every test seems to be normal or at least not that bad. This isn’t getting any better and has rapidly progressed over 6 months. Losing insurance in less than a month. Any insight would be greatly appreciated. I am not sure what else I can do at this point. I realize this is a lot. I wish I was joking. Recently becoming more concerned as I don’t feel my MRI matches the severe pain and neurogenic claudication I am experiencing. Some doctors say it matches exactly and I will need surgery in the future, some doctors say it doesn’t match at all. I have several pictures documenting the dermatological symptoms if needed but reluctant to add to have some privacy.

Medications
Modafinil 200mg qm- Narcolepsy
Pantoprazole 40mg bid- GERD
Sucralfate 1g bid- GERD
Slynd 4mg hs (continuously- no placebo)- Endometriosis 
Buspirone 30mg bid- Anxiety
Gemtesa 75mg hs- Interstitial Cystitis
(NEW) Gabapentin 300 mg TID- Lumbar stenosis
(NEW) Celecoxib 100 mg BID- Lower back pain

PMH
Hypermobile Ehlers Danlos Syndrome (diagnosed via beighton score 2021)
POTS- unspecified (diagnosed via orthostatic vitals 2021)
Gastropresis (diagnosed via endoscopy with pseudobezoar finding in 2017- several gastric emptying scans throughout the years confirming)
Endometriosis (diagnosed via laparoscopy 2023)
Irritable Bowel Syndrome-M (diagnosed via Rome IV criteria 2019)
Type 2 Narcolepsy (diagnosed via PSG and MSLT 2023)
Dry Eyes (2023)
GERD (diagnosed as child around 6-8 years old)
Interstitial Cystitis (diagnosed via symptoms/cystoscopy 2019?)
SIBO (diagnosed via hydrogen breath test 2018)
Lumbar Stenosis with Neurogenic Claudication (diagnosed via lumbar MRI 2026)
Herniation of intervertebral disc between L5 and S1 (diagnosed via lumbar MRI 2026)

Recent Significant Findings
L5-S1 disc desiccation [Pfirmann I|I] with posterior annular fissure, diffuse disc 
bulge, and moderate thecal sac compression [Schizas B]; right lateral recess narrowing with right neural foraminal stenosis [Lee Grade 2] and mild impingement on the exiting right L5 nerve root, concordant with reported right-sided symptoms. No cord signal abnormality. Remaining lumbar levels unremarkable.
   Diffuse disc bulge at the L4-5 level with minimal thecal sac compression.
Diffuse disc bulge and small left paracentral disc protrusion at the L5-S1 level with compression of the left S1 nerve.
L5-S1: Mild diffuse disc bulge with borderline wide-based protrusion
extending into the right and left foraminal zone causing mild left neuroforaminal and lateral recess with moderate to severe right lateral recess and neuroforaminal stenosis with potential descending right S1 and exiting L5 radiculopathy without significant central stenosis. Mild facet sclerosis.
GASTRIC EMPTYING RETENTION TIMES: SCAN TIME (Min) % RETENTION
60 100% 
122 85%
184 58% 
243 34%
Post-Void Residual (PVR) showing 178mL of urine left in bladder 

Recent testing that show no abnormalities
Tryptase
ANA Screen IFA
BMP
CMP
Coagulation Panel
CBC & Differential
Urinalysis
Auto Sed Rate
Hemolysis, lipemia, and icterus
XR Hip 2 Views with Pelvis LT
XR Chest 2 Views

Symptoms

Neurological/Neuromuscular/Musculoskeletal System
Full back pain, more intense in the lumbar region
Left Shoulder Pain
Myalgia of the auxiliary muscles of the head and neck
New onset numbness, burning, tingling in the lower back and legs
New onset leg numbness when laying on side (happens on either side)
New onset weakness and heaviness in legs
New onset neurogenic claudication
New onset inner knee giving out- only right side
Pain in hip bones
Stiffness in hips when transitioning from sitting to standing

Autonomic Nervous System
Gastroparesis with 30lb weight loss in 4 weeks
Urinary frequency and urgency
New onset inability to reach orgasm
2 episodes of incontinence with no feeling of wetness until visually observed
Clear pee associated with frequent urination even when dehydrated
Nausea
Diarrhea
New onset constipation
Profound lethargy when exposed to sun (not heat related, simply light related)
Eye pain and heaviness (eyes feel easily strained, leading to headaches or need to sleep)

Dermatological
Red, itchy hands that worsen at night or with any activity
New onset redness on face 
New onset broken capillaries on face, especially during activity/exercise
V-sign rash, especially during activity/exercise
New onset full body itchiness
New onset scalp itchiness after showers (regardless of temperature)
New onset rapid growing hirsutism of upper lip and eyebrows
Slow wound healing
New onset nail splinters
New onset nail brittleness 
Thick, rapid growing cuticles
New onset yellowing of cuticles
New onset scaly, itchy rash on elbow area when exposed to sun
General itchiness and burning when exposed to sun
Unilateral atrophy of the nasal tip with localized telangiectasia (progressing over the past 6 months)

Vascular and Circulatory System
New onset protruding veins on hands and feet (happens when redness/itchiness occurs)
New onset noticeable vein coloring on legs (when experiencing pain/numbness/tingling)
Excessive/slow healing bruises (can take weeks-months, even years)
New onset raynaud’s phenomenon
Mottled, net-like discoloration of the skin (worse during exercise)

I have decided that I am done. I have had mental health issues due to trauma my entire life. I have been to plenty of facilities and therapists and tried so many meds my doctor thinks I am med resistant and need to try alternate therapies. My mental health has taken a huge hit this past year. So much happened, I honestly don’t even know how I made it to this point. To top that, I am severely anorexic (again). I have decided I am too far gone. No one can “fix” me, no one can help me, and I don’t want to help myself. Trust me, I have tried and tried. I’m done. I’m not sure when, but I will be ending my life soon. I feel really good about it. It’s definitely time. I have always thought that mental illness caused that “I will never get better” mentality but, I’m not sure if that’s the case here. My mental health probably could get better. I just don’t care anymore. Thanks for letting me get this off my chest. God speed.

I have an ex who kind of just triggered me more than anything in my life. I’m not going to get into it, but I’ve had a really rough year. I went into a psychosis which has never happened before because of severe, prolonged stress. Anyway, I was very unstable and kept breaking up with him and he eventually left saying he loved me but he needed to protect himself. This was in September 2025. I acted crazy. I would make fake numbers, stalk his socials and who he followed whenever I was unblocked, text him a good amount but not daily and maybe like 10 texts max, but that’s simply bc i’m the type of person who sends multiple texts and not one big one (annoying, i know). Sometimes it would be weeks in between. I guess I got confused bc he would answer sometimes. Sometimes he loved me again. Sometimes he would even hang out with me. But then sometimes he hated me again. I don’t know what’s become of me. We started things up again about 2 weeks ago. Last week, I told him I don’t think I can do this because I can’t forgive him for all of the shit he’s done. It was completely wrong of me to open this up and then leave again. I’m a horrible person for this, truly, I do not know what’s wrong with me. Anyway, he was begging me to love him, for us to work, for me not to leave. BEGGING. Begging begging begging. I stay. He leaves me this week. I am hurt, confused, disgusted. Day 3 no contact, I check his IG. idk why. I just did. I look at his followers. I see this half naked girl he follows. No hate, she can do her thing but then I feel insecure. I never had sex with him. Maybe I wasn’t provocative enough, maybe I wasn’t attractive enough. Who knows. I unblock him. I text him. I tell him I hate him. I tell him I hate the girl he followed. I act like a child. I felt sick to my stomach. Then he says I am scaring him and that I am borderline stalking him and he will contact the police if I text him again. Can I please stress that I know I should’ve not done that. I know I shouldn’t make fake numbers. I know that I should leave him the fuck alone. Idk what’s wrong with me. I’ve never acted like this with anyone. I think I have placed my self worth in his hands and what hurts the most isn’t even losing him it’s how fucking worthless I feel. Anyway, I have never had anyone say I scared them or I was stalking or harassing them. Never. I didn’t even realize I was coming across like that. In my head, he was begging me to be with him and love him LAST week. I didn’t expect this. I will never contact him again, obviously. The shame, guilt, and disgust i feel with myself is killing me right now. I don’t feel like I can survive this. Someone please tell me I can get through this. I feel so horrible I made him feel that way. I didn’t mean to.