No diagnosis positive ANA 90+ recurring symptoms 12+ years

Hey guys. I'm a 28 year old female.

I've been told by a friend for years tha t I have lupus. This friend has had it herself for over 20 years and is a brilliant psychiatrist. In the area I live it is completely impossible to get a decent doctor. That is not helped by the fact that we only have one rheumatologist in the area and it takes over 6 months to get in, I'm still waiting... as if that wasn't stressful enough I have heard nothing but horror stories about the doctor.

I feel so helpless.

I'm going to try this week to get a referral up to a big city, even though it's a long drive it will be worth it.

In the meantime I thought I would seek others advice and share my symptoms.... the way the doctors have been treating me made me give up for a while....

I have been keeping notes and everything to try and help them diagnose me bu t they just treat me like I'm insane....

I have a history of pneumonia and chronic bronchitis. History of anemia, PCOS. I also work.

Symptoms:

Lungs:

Difficulty breathing

Shallow breathing (anything more causes uncontrollable coughing and incontinence. And it's dangerous when driving.)

Painful to breathe

Can't fill lungs, feels like I can't expand them

Feeling like my lungs are full and congested 75% of the time

Coughing up mucus (with no cold, flu, infection sometimes with blood)

Heart:

Irregular beating (fast, abnormal, non rythmic)

Heart skips beats (several in bursts)

Sharp pains

Pain and pressure

Sudden short lived severe chest pain.

Skin:

Bruise easily.

Rash from sun and UV exposure. (Red splotchy)

Extremely sensitive (can feel everything times 100)

Rash when stressed on chest and neck.

Hives from stress. (Severe, left scars)

Rash for no reason (neck. Under chin, chest)

Sensitive to touch. (Pain from even slight pressure)

Lukewarm water burning skin (feels like my skin is set on fire. Skin turns red and gives off heat like a burn)

Cysts under arms

Random dark patches of hair growing

Tenia versicolor recurring severe for 10+ years

Feels like getting stabbed by needles if anything touches me even gently.

Sensitive to touch makes my nerves go nuts, feels like super overstimulation

Sleep:

Daytime sleepiness

Waking up 2 to 4 hours early.

Waking through the night

Trouble falling asleep

Excessive sleeping

Sleeping 7 to 10 hours consistently then still exhausted.

Sleeping while sitting up at home and work.

Only able to sleep 1 to 2 hours at a time.

Sometimes straight up insomnia.

Eyes.

Worsening blurry vision at times.

Red inflammation around eyes (eye lids)

Itchy sore eyes following the inflammation

Blurry in one eye.

Tremor.

At rest or while active. Or both

Sometimes better with action.

Sometimes worse with action

Sometimes specific fingers sometimes fingers, hands, and arms.

Muscular:

Stiff rigid muscles.

Difficulty standing.

Difficulty walking , stiff, shuffling, waddling

Involuntary spasms and major twitching

Slow movement

Muscle weakness and aching like I have the flu.

Restless legs at times. Bouncing leg while seated, shaking feet, legs. Also while lying down

Cognitive

Confusion.

Significant memory loss. (Extremely frequent)

Difficulty thinking, processing, understanding things.

Brain fog

Anxiety

Depression

Declining facial recognition

Lose track of sentences and stories mid speech

Slurring words without realizing it

Extreme anxiety about leaving the house for anything except work. Stopping on the way home doesn't happen often because of anxiety.

Spacing out and feeling out of my head

Lose coordination.

Stomach

Constipation

Constant nausea.... about 97% of the time.

Lack of appetite, food makes me sick. Even just thinking of food makes me want to vomit.

Trouble swallowing food. Sometimes it feels like it won't go down and it makes me almost vomit.

Food and pills feel like they are stuck at the top of my throat after swallowing.

Acidity in my stomach up to my throat from not eating. (Started drinking meal replacement shakes daily to cut it down, some days I can't like today because just smelling the chocolate makes me want to vomit)

Head

Migraines.

Dizziness

Light headedness

Random loss of hearing and ringing

Disorientation.

Sudden rush of pressure to my head that makes my eyes feel like they are gonna pop out paired with dizziness, light headedness, and loss of hearing. Happens randomly with no warning

Nerves

Facial neuropathy.

Neuropathy in fingers, toes, hands, feet, wrists, lower arms.

Random Sharp nerve pain usually causing muscle spasms while nerve is firing.

Sudden Sharp pains. Could be anywhere in the body for no reason.

Other.

Trouble maintaining body temp.

Changing vision. Declining, shifting,

Tingling outward pushing pressure. Right side under rib cage.

Severe fatigue most days.

Popsicle fingers and toes (white finger tips)

Constant weight gain and loss

Occasional sores in mouth. Painless mostly unless I'm not careful.

Changes in handwriting.

Pain:

Back pain; Sharp, dull, radiating, burning, pulsating, feels like vertebrae are loose and out of place at times. Very stiff at times. Cramps and spasms. Sometimes you can feel heat coming off my spine while the rest of my skin is normal/cool. Back pops from moving and breathing. Some days it's so bad I can't even dress myself.

Feet; inside heel, in the ball of my foot and my tendons. I can feel every bone and joint throughout my feet, especially while standing, but also while at rest sometimes. Cramps and spasms.

Hips: started with the right hip. Extremely bad pain in right hip. It's constant pain but better sometimes. Left hip isn't as severe and is on and off.

Knees; aching pain and sometimes it feels like my knee cap is loose and moving.

Collar bone; extreme on either side some days. Most days pain is moderate.

Jaw; randomly for a week or so at a time my jaw will be really sore and it hurts to open my mouth, like a dentist pulled a deep rooted molar.

Does anyone have any suggestions, opinions, thoughts? These symptoms tend to come and go. For instance I fell January 3rd and bruised my tailbone, from there these symptoms all started again and I felt awful. Going through most all of them daily all of January and February and partway into March. I started to feel better again and most of the symptoms went away except pain and nerves. It comes and goes like that....for the past 12 years. Starting shortly after a car accident resulting in a TBI and back and neck issues.

Not my first back injury. Or last.

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