Hi sorry this is such a long post, but I’ve been searching for answer for 2 years and all I’ve done is confuse my doctors. I’m literally purple all of the time and I’ve been experiencing weird symptoms that no one has been able to figure out. I’ve been experiencing all of the symptoms listed below for about 2 years make and they are only getting worse. I’m at my wits end and I don’t know what to do anymore. If anyone can give me any advice I’d greatly appreciate it.

Personal Details: 

I’m 18 and female

Although I’m not proud of it I do vape

I’m 5’5 and about 220 lbs

Family history:

My great grandmother and grandmother have lupus

My aunt has fibromyalgia 

My maternal grandmother had 2 heart valve replacements in her 70s

My paternal grandfather had a triple bypass in his 60s

My maternal grandmother and paternal grandfather both had type 2 diabetes 

Symptoms:

Purple skin

Weird “web” pattern on my arms, legs, torso, and cheeks, although this has been with my for as long as I can remember, it’s just continuing to become more noticeable as time passes(pictured above)

Often experience a red and painful rash across my cheeks that last between a few minutes to a few hours 

I have joint stiffness in the mornings and at night in my fingers, knees, hips, wrists, and elbows

I have headaches almost everyday

I have facial twitching in my eyelid and lips

I have tremors in my finders nearly everyday 

I experience blood pooling in my legs and arms

When this happens my hands and feet feel extremely itchy or they go numb

I feel extremely fatigued all of the time and no amount of sleep helps (I have some weeks where I literally can’t get out of bed)

I experience “episodes” where I get very clammy (but feel like I’m super hot), nauseous, shaky, and sometimes faint (not for more than a few seconds)

These episodes are also often accompanied by sharp chest pains

Medical history:

I have been to both a cardiologist and a rheumatologist 

My ekg and ecg are both normal 

30 day heart monitor did not catch anything abnormal 

I have no vitamin deficiencies 

I’m not anaemic

I do have slightly elevated platelets and have for about a year now (maybe longer but I didn’t have any labs before that)

When testing for inflammation, lupus, and Reynauds (idk how it’s spelled) or whatever a rheumatologist would think to test for that stuff, all of my labs came back slightly elevated but with no critical values

The rheumatologist said my labs were like that of someone who just got over a cold. (Problem is that I’m not sick 😭)

What had been ruled out so far by my doctors and lab results:

POTS

Raynauds

Lupus

Any heart conditions or defects

Arthritis 

Autoimmune Disorders 

Diabetes

Hyper and hypothyroidism 

Vitamin deficiencies 

Anemia

I don’t think anyone in my life has any idea how debilitating and soul crushing this experience has been. I have about 4-5 usable hours in a day before it literally hurts to be awake. I feel sick ALL of the time. I don’t have good days. I have bad days and worse days. I’m in and out of doctors’ offices (I’ve been to the doctor 18 times since September) and I literally have no answers. Every visit leaving me with less hope than before. 

I’m Turning Into Barney the Dinosaur and I feel awful