Aa
Aa
A
A
A
Close
Avatar universal

Could these be symptoms of lupus? Please read if you have lupus

I have been dealing with a “spaced-out” feeling for years now. Not sure how to explain it but it’s like I can’t feel my body, like my body is numb and it’s gotten to the point sometimes I can’t tell my right hand movement apart from my left hand movement because I can’t feel them. Doctors have been unable to diagnose me for 5 years and it’s getting worse. It started out it in my arms and was only happening every few months, now it’s my entire body and it doesn’t go away. I’m constantly in this state which has made it very hard to feel present. I’ve started to just call it malaise since it’s an overall weakness/light feeling. And I also have moments where I Get really dizzy or feel like my body is shutting down and during these times my heart beat gets so weak that it’s hard to feel it. Recently I’ve started to have worse symptoms.

The other day me and my bf were having a great day and we were driving home, when suddenly I started feeling a burning sensation inside of my head (left back side), I asked him to touch the outside of my head and just in that one spot it was extremely hot. Then I started feeling a pressure and almost like something heavy was suddenly blocking my thinking. I started slurring and felt like I was going to pass out. We were terrified. The ER did nothing because of my low insurance and after hours the feeling passed but I’m starting to get like a quick burn sensation that lasts seconds throughout my head and it happened the other day on my foot too.

I also woke up one day recently with calf pain so bad I couldn’t walk on that leg. My d-dimer was negative.

I’ve also had chest fluttering and abdominal pains and mentally have not felt like myself at all.

I’m taking iron for my iron-deficiency anemia and birth control for my fibroid. And I had a reactive RPR test for syphilis but a negative FTA-ABS test and my boyfriend had a nonreactive RPR test and we’ve only had sex with each other for almost 2 years.

I’ve had normal MRI’s of my head/neck in the past and normal blood tests besides low white blood cells and low iron and that reactive RPR.

None of my symptoms seem connected with one another and it’s seriously driving me crazy. I’m so terrified that by the time doctors know what I have it’ll be too late. I remember what it was like to have a normal body and I just want to get back to that but I don’t even know where to start. My mother has lupus so I’ve started to consider that but I don’t have a butterfly rash or the more typical signs. At one point I considered neurosyphilis but now that I see my bf has a negative test I’m not sure how that would be possible. From my understanding though, a reactive RPR means my antibodies are off. Something is really wrong and I don’t know what and it’s terrifying. And the doctors don’t believe what they can’t see. I’m only 28.

Please if you have lupus, let me know if you’ve had any of these symptoms/results!
4 Responses
Sort by: Helpful Oldest Newest
15695260 tn?1549593113
Hello and welcome to the forum.  Here is some information on Lupus symptoms. https://www.mayoclinic.org/diseases-conditions/lupus/symptoms-causes/syc-20365789  While your symptoms could be related, they definitely are not typical.  On the surface, they sound more neurological in nature.  Have you had a physical lately?  I would see your regular primary care doctor to go over your symptoms and see if they want to refer you to a neurologist.  The tests for Lupus can be many so they usually assess based on symptoms and go from there on an individual patient to patient basis.  A rheumatologist is who diagnoses Lupus.  Please let us know how you are doing.
Helpful - 0
Avatar universal
Agree with the moderator; consider consultation with a neurologist. You might also want to rule out multiple sclerosis (MS). Even though your MRI was unremarkable, around 5% of people with MS may have lesions that cannot be detected by MRI.
Helpful - 0
Avatar universal
You had described a burning sensation in the back of your head. One thing to consider is Lhermitte's sign (aka barber chair phenomenon), which refers to a sudden sensation resembling an electric shock that passes down the back of your neck and into your spine and may then radiate out into your arms and legs. It is usually triggered by bending your head forward towards your chest. It can be a symptom of multiple sclerosis but also occurs in other conditions.
Helpful - 0
Avatar universal
Other things to rule out: Lyme disease, syphilis, and vitamin B12 deficiency.
Helpful - 0
Have an Answer?

You are reading content posted in the Lupus Community

Didn't find the answer you were looking for?
Ask a question
Popular Resources
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
Can I get HIV from surfaces, like toilet seats?