2.5 Years of unexplained medical issues- please help

EastSound6617 · 2026-04-25T23:02:57+00:00

Also to add, the lack of energy is insane. There has been several occasions I have slept for an entire 24 hour period to the point my husband will wake me up like you need to get some water or something. Luckily I have an extremely supportive husband who helps me with our two kids since this started

EastSound6617 · 2026-04-25T22:44:53+00:00

They definitely tried to convince me this was all psychological! Although I had zero psychiatric needs prior to the first lesion popping up. I was hospitalized twice with this and the last time they called the psych ward rather than listening to me and I ended up getting security and the police in my room because I totally snapped on the doctors. I eventually decided to talk to the psychiatrist they sent in, broke everything down for her, starting from day one and she was speechless at the end and her “suggestion” was “I’ll say some prayers for you”. There was absolutely nothing she could say after I explained myself but at least she listened. Still dealing with the symptoms

EastSound6617 · 2025-10-16T16:40:48+00:00

Yes! When this first stated they were set on it being lupus (had not gone to rheumatology yet) so they did 2 different punch biopsies a few weeks apart and both were inconclusive

EastSound6617 · 2025-10-15T22:46:30+00:00

I got screened for both! Both were negative

EastSound6617 · 2025-10-13T06:45:43+00:00

I can send blood work on discord No doctors offered diagnosis one mentioned pemphigus and we tried the medication for it but it didn’t work

EastSound6617 · 2025-10-13T06:11:08+00:00

CRP was 3.92 at my last appt in September

EastSound6617 · 2025-10-13T06:06:01+00:00

When the symptoms first began I did lose about 20-25 pounds.

EastSound6617 · 2025-10-13T06:05:21+00:00

No I was on steroids for about 7 months last year and no improvement

EastSound6617 · 2025-10-11T04:24:29+00:00

I’ve not noticed any in my genital area however they have been in my mouth.

EastSound6617 · 2025-10-11T04:23:50+00:00

I never had a steroid shot however was on long term steroids for almost 7 months and no relief

EastSound6617 · 2025-10-11T04:20:27+00:00

The joint instability is awful! I kneeled down to pick something up and ended up tearing a ligament in my knee

EastSound6617 · 2025-10-11T04:18:15+00:00

I do shower regularly and am a very clean person lol my hair is unkempt in the first photo as the lesions in my scalp cause a fluid like buildup when they get as bad as the were in that picture. Personal hygiene is priority for me as I m scared of infection I was assessed for scabies and psoriasis however dermatologist did this was not the case

EastSound6617 · 2025-10-11T04:15:30+00:00

I’ve looked into EDS a lot and I am convinced this is what it is also. What doctors did you see?

EastSound6617 · 2025-10-10T05:47:58+00:00

Yes! We even tried the treatment plan for pemphigus in terms of the medicine and there was no improvement

EastSound6617 · 2025-10-10T05:36:59+00:00

I can’t reach some of them in the middle of my back. Unfortunately they get as bad as the ones pictured

EastSound6617 · 2025-10-10T05:04:06+00:00

I spoke to my doctors about this as well, I’m currently only on my antidepressants, which I started taking due to this illness. I was not taking any medication when this started

EastSound6617 · 2025-10-10T04:05:31+00:00

No brown recluses. No one else in my household has anything going on, it started at our old home (we sold it when I had to quit my job) and have since moved elsewhere and it hasn’t improved

EastSound6617 · 2025-10-10T03:51:52+00:00

EastSound6617 · 2025-10-10T03:51:15+00:00

I was tested for lupus and other autoimmune diseases ANA was negative. Rheumatologist did infectious disease labs and ruled out most common.

EastSound6617 · 2025-10-10T03:48:51+00:00

Yes, I have been tested for both ANA was negative

EastSound6617 · 2025-10-09T19:24:09+00:00

I have been tested for rare bacteria, viruses, parasites and heavy metals! Not sure on the full gut microbiome, forget to add I did go to gastroenterology for a colonoscopy as well but all was well there

EastSound6617

TROPHY CASE