Tumid Lupus with SLE Symptoms?

Yes, I fit the profile and it's been a roller coaster of a ride. Doctors, many really don't understand that it mimic so many other things. Wasted thousands of dollars on tests. Understand there is no easy way to state everyone has same profile. We all have similar symptoms and depends of doctors knowledge of Tumid Lupus and or SLE. Then it's the side effects from chemicals they put you on also. Someday I hope they will find a better test then ANA for those of us that don't show positive, yet have all the symptoms. .

I have had Tumid lupus since age 14yo. I am now 44yo. My daughter has SLE with a positive ANA. I have a Negative ANA. I also have all the signs of SLE and googled it and came across your post. I may have a diagnosis of SLE from my Rheumatologist I'm not exactly sure. But I am going to Birmingham to another Rheumatologist for further testing. My joints and muscles hurt me daily. I am taking Enbrel and Plaquenil 200mg twice daily. I have noticed some improvement. But in 2018 was admitted to the hospital with severe anemia and no major cause of blood loss. I had been treated for what my GI Dr. Said looked like a bad case of Crohn's disease and a duodenal ulcer which was superficial. Ive had kidney issues since my teen years also. Your case sounds so much like mine! I had been looking at benlysta online and it sounds like a good one. I do hope she will tey me on this drug also!

<p>Found some Nodes in my neck. Had an Ultrasound Benign Lymph Nodes. Anyone with Immune Diseases have this experience. I have also Been Diagnosed with Lupus.</p>

<p>Found some Nodes in my neck. Had an Ultrasound Benign Lymph Nodes. Anyone with Immune Diseases have this experience. I have also Been Diagnosed with Lupus.</p>

Hi,
I guess I will start from what I know
First I was a very healthy kid. I have had a lot of ongoing stressors, but healthy. I will try to put stress in some sort of light. Trauma stresses of murder of a close one, molestation with crazy mind games and physical abuse. 3 rapes, abusive relationship in high school. Then another. Young pregnancy which I was abused during and went into early labor. Went toxic after a beating and was induced. Three more pregnancies all with pre eclampsia. Extreme abuse in the home and was eventually left homeless and a childcare provider suffocated my son. Went from all that to single mother of four little kids trying to go to college....ended up joining the military was released due to unknown medical issues (will swing back to that). Married again, very tragic end to that. Married again was working long hours found out person was abusing my kids and snorting cocaine. Now I am married again and we have had some very big downs. Son ended up in crazy treatment, so much court, husband is now in rehab for alcoholism. Really it never flipping stops. Quit my job trying to deal with all of this and having flare up after flare up of who the heck knows what.
Ok keys here for medical.
During pregnancies I was put on thyroid meds for the fourth one. Small dose and never followed up on it.
In the military I was top notch. Had a 4.26 minute mile, weighed 118 lbs. 104 situps in a minute, they called me superstar and not in a bad way. I had extremely high scores across the board and felt amazing.
Then all of a sudden I could not hold any vitamin D or iron. I looked like I was gang raped by a group of linemen. Girls who had to shower with me left in tears. I was a walking bruise.....deep awful bruises. It was grotesque looking. My abdomen, inner thighs, legs, back, breasts, arms. Everything was a bruise. I couldn't stand or sit, I would just fall over. Writing in class would become eligible and would fall off my chair.
Fast forward, took a discharge but no one really could figure it out. Eventually I began really struggling with my weight and I was running miles a day and eating a bowl of cream of wheat. I was drop dead tired all the time and was always a wreck. Eventually a doctor tested my thyroid levels. Cant remember what they were but was put on a dose of 250. Not 25, 250. When I picked it up from the pharmacy he looked at me like I was insane. Tested positive for hashimotos and the story of silly bull has continued.
I started developing these weird bruises on my legs. They started as a deep insane itch and would turn into months long itchy bruises.
Always fighting swelling.
I have a huge butterfly rash across my face that becomes very prominent during times of stress or flare ups.
I get crazy joint pain that makes no sense.
My hands sometimes just stop working and I drop things.
This summer the bottoms of my feet just went crazy. My doctor called them lupus feet and sent me to an endo that basically laughed me out of the room and said it's just your hashimoto's. All of a sudden fibromyalgia showed up on my chart? Mmmmk. I did nothing and my feet swelled like balloons. I think I stepped on an acorn, not sure. Today I closed a door and half my hand blew up. Like painful awful hell. I shut a door, that was it. I have been super stressed and I know I have been having a lot of crazy fatigue and joint issues but this was flat out all the tissue in my hand became hard and huge and painful. Not thumb, just the four fingers and top of my palm. Now I am getting the swelling down and I have a weird bruising that is all washed/spread out and now my palms have dots that have an insanely deep itch like what I get on my legs and what happened to my feet over the summer. Other than that just sheer fatigue. Especially in my shoulders and arms.
I understand stress causes flare ups but I cant find anything that says this is a hashimoto's type flare. I am tired of fighting with it.
My weight is blah and I have been amazingly infertile since my last child. Not complaining but always found it strange. Also doctors have always said the same thing to me. If you dont want any more children why do you care....well for someone who had four pregnancies between 98 and 04 just seems a little strange to go from Being laughed at for being overly fertile to not fertile at all.
Only other thing is at 39 I have been told I am most possibly in early onset menopause. Just keeps getting better.
Other randoms I now have migraines...I had a clean scan a year and a half ago, then I was scanned again about a half year ago for continuing migraines and a mass that had developed in my face. They said it was a weird cluster (I call it weird) of veins that have bunched together near my jaw? I thought it may have been the cause of migraines but they said no, just a thing that happens.
I do not mean to sound crabby....lol. my sarcasm can be a little off putting, but I really just want to get to a good place and not sure how when I dont know what I am up against.

Hello @ejlm, Welcome to Connect. I know you must be terribly frustrated trying to figure out what's causing your symptoms. From what I have read, one of the symptoms of Lupus is the butterfly rash across the face.

Mayo Clinic - Lupus Symptoms & Causes: https://www.mayoclinic.org/diseases-conditions/lupus/symptoms-causes/syc-20365789

PubMed also has some information that you may find helpful here: The Butterfly Rash and the Malar Flush. What Diseases Do These Signs Reflect?
-- https://pubmed.ncbi.nlm.nih.gov/1824645-the-butterfly-rash-and-the-malar-flush-what-diseases-do-these-signs-reflect/

I'm tagging our moderator @ethanmcconkey to see if we should move your post to the following discussion where it will receive more visibility.

> Groups > Autoimmune Diseases > Tumid Lupus with SLE Symptoms?
-- https://connect.mayoclinic.org/discussion/tumid-lupus-with-sle-symptoms/

@ejlm have you thought about getting a second opinion at a major teaching hospital or Mayo Clinic? If you would like get a second opinion from Mayo Clinic, you can find the contact information for the Minnesota, Arizona and Florida campuses here http://mayocl.in/1mtmR63.