Mother has marker for LUPUS

i’ve had EM since 3. on and off various places of mg body. it’s only been recent 5 years i have raynauds and such bad systematic swelling that i can’t walk… as well as isaac syndrome (muscle spasms and cramps on legs… nerves continue to fire off when at rest)

my mother has experienced bad symptoms in the last 3 years. starting with raynauds and ridiculous swelling of her feet and ankles … tho she can still manage to walk, emitting heat from various body parts but no painful burning, and the other extreme of being so cold she can do nothing but be wrapped in heating blankets with black hands from raynauds

we see the same rheumie. we haven’t had the same tests done - i was checked for carcinoids, shogrens and nerve conduction
my mom was sent for special blood work to be done at the hospital only… and showed ‘markers for lupus’

should i assume i show these markers too?
we share several symptoms but mine are far more severe.

i get systemic swelling… even of my tongue, as a result of being cold. looking back now … i’ve been doing this all my life. i was misdiagnosed with an eating disorder (just like i sometimes burn just from eating i would swell instantly as well. caused me to stop eating and fear the swelling, what i understood as ‘getting fat’.) honestly, now at 43 looking back… yeah, your hands don’t instantly ‘get fat’ from eating carrots … but that’s what i thought was happening to me. sitting down to eat… i could feeeeel myself start to swell, just like the beginning of a burn, you know. you just know so… how was i eating a diet yogurt and literally feeling my bra slide up as it’s getting tighter each second!! i was hospitalized several times in my teens for eating disorder!!!)

i get it now- the swelling is another response to my parasympathetic system, just like the flares.

the tongue swells i even talk with a lisp sometimes!! im kindergarten i was put into speech therapy because i had a lisp. someone mentioned mu lisp a couple of weeks ago… and i realize i only sometimes have a lisp. it’s when i’m swollen and my tongue is fat.

i spent my 20s in therapy for hours and hours complaining how suddenly my jeans don’t fit and i’m an anxious mess and i’m scared to eat.

i spent hours tracking my period and hormones convinced i was spending 9/10 of my life have pms bloating and swelling.

when i complained about zapping and tingling and shooting pain in my feet and legs… my primary care physician (thinking i was near crazy cause i had a long history of eating disorder therapy and hospitalization as well, i was in a physically abusive marriage at the time - i obviously didn’t feel my worth- i knew i wasn’t ‘normal’ my body hurt in a million ways i couldn’t explain to even doctors) so he made me do a year of psycho therapy before he even gave me a referral to a rheumatologist. he thought all my pain was in my head… depression and anxiety from a bad marriage and ‘silly’ eating disorder that had persisted from 12 to 40, i know he judged me as crazy and immature!!!

im finally making a little sense of this body… after years and years of being told i was mentally ill.

dammit. i’m in pain. i’m not crazy. i swell. i burn. i freeze. i hurt

it’s only now… with technology i have video of my legs twitching in pain… and pics of my burning and swelling. i’m not crazy.

hahaha … i woke up with my skin tight and sensitive… i’m swollen and frozen … i decided to be kind to myself instead of hating my body like i have most mornings for years. i partook in weed and turned to a place i’m so grateful for.

thank you fellow warriors

Cherry, some of the symptoms you mention sound like Small Fiber Neuropathy, have you had a biopsy? This is different than large fiber damage, large fiber is what an EMG or nerve conduction study show, small fiber is different. You might want to research it. Many Neurologist are unfamiliar with it, but many with EM have SFN. I do, it was caused by my autoimmune diseases. Before the biopsy, doctors treated me as if it was “non-organic” in nature, frustrating to say the least. Finally, the third Neuro I saw did the biopsy and followed up on the positive ANA that everyone else had totally ignored. I am now with a decent Rheumatologist who diagnosed me with Mixed Connective Tissue Disease and a very rare autoimmune disease, Relapsing Polychondritis. I started Methotrexate 2 weeks ago. I hope that finding the cause and treating it will help to improve the EM, small fiber nerve damage, Raynaud’s and fatigue. I hope you get answers.

Hi, at the moment I’ve been tested for lupus. Been diagnosed with sticky blood. Got test 8 wks ago just had new blood test. Seemingly need 2 positives 6/8wks apart.
I’ve had EM for some time now. Hands not good. My rumie is saying the link is my sticky blood. Get tested, instead of wondering. Good luck

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thanks for replies!!

i’m in CANADA and i have zero say in what tests doctors give me. i had an MRI done after sitting on a waiting list for a year … when i knew it was a waste of time and money.

i’ve been begging for a biopsy from my neurologist, rheumie and dermatologist and primary care but they all explained to me that it’s expensive, rarely done and false positives and knowing won’t change the treatment approach