“I was wondering if anyone else has had face, head, neck or abdomen numbness. I am trying to find out if this is lupus related.”
I believe so because I get it in my hands and my doctor said that was common.
How long does it last when you get it? Do you know why it happens? How often does it happen?
I do too
I get it in my hands and feet! They feel like swollen hot sausages!
Can you give me any details of how long it lasts? How often does it happen? Do you have any idea why it happens?
I’m so glad you posted. I hope others can give you some helpful insight. God Bless!
Thanks. I am hoping to get some details that might help me sort through some things. 
This happens to me as well. The face and lip numbness lasts at least 2 or 3 hours, the numbness in my extremities can last from hours to days, and the numbness in my pelvis several hours. I do have several bulging discs that contribute to the numbness so in my case it’s not all lupus. I hope this info helps.
Hi Grace,
I do get face and head numbness followed by pain that my nurologist says is caused by vasculitis headaches. I also have numbness in my feet and hands that is caused by vasculitis. The vasculitis is a result of my lupus. I think you need to see your specialist(s) to discuss and find out what is going on.
All the best,
Meg
I have had facial and head numbness on both sided for 3’years. I also have tinling and mouth numbness. Doctors day it is trigeminol neuralgia due to inflammation but no drugs help it.
That is all very interesting.
Annemarie said:
This happens to me as well. The face and lip numbness lasts at least 2 or 3 hours, the numbness in my extremities can last from hours to days, and the numbness in my pelvis several hours. I do have several bulging discs that contribute to the numbness so in my case it’s not all lupus. I hope this info helps.
I find those details interesting and helpful. Thank you so much for everyone that has responded to my questions.
I am seeing a neurologist now.
MegLupusNewbie said:
Hi Grace,
I do get face and head numbness followed by pain that my nurologist says is caused by vasculitis headaches. I also have numbness in my feet and hands that is caused by vasculitis. The vasculitis is a result of my lupus. I think you need to see your specialist(s) to discuss and find out what is going on.
All the best,
Meg
I have numbness in my hands and toes as well. I have stomach problems and boy do I have neck problems as well so I feel you in all the above. I hope you get to feeling better soon!
Thanks for the input Carol. I’m trying to collect as much info as I can on this.
I wish mine would only last 2 or 3 hrs,ive hade mine for 1 and 1/2 yrs.and no meds help,im about to go out of my mind,ive lost so much weight cause I cant stand to eat anything that isn't soft,it stinks I have had more tests than I can count and seen more dr and no one can figure it out.
Grace said:
That is all very interesting.
Annemarie said:This happens to me as well. The face and lip numbness lasts at least 2 or 3 hours, the numbness in my extremities can last from hours to days, and the numbness in my pelvis several hours. I do have several bulging discs that contribute to the numbness so in my case it's not all lupus. I hope this info helps.
Have they checked the nerves in your face? My father developed a tumor on one of the trigeminal nerves and it caused numbness etc… For over a year before they found it. Unfortunately when they removed it they nicked the nerve so one side of his face droops. He was not happy since he’s an orthopedic surgeon and he went deaf in the ear on that side. The OR nurses all had to learn to speak to his good ear when he was performing a surgery. He’s mostly retired now. Just sees long time patients. I’m sure that they’ve already tons brain scans etc… On you but it never hurts to check again. I just had another one done and they found a cyst on my pineal gland which is contributing to the constant headaches. You just never know. Good luck!
foreverhopeful said:
I wish mine would only last 2 or 3 hrs,ive hade mine for 1 and 1/2 yrs.and no meds help,im about to go out of my mind,ive lost so much weight cause I cant stand to eat anything that isn’t soft,it stinks I have had more tests than I can count and seen more dr and no one can figure it out.
Grace said:That is all very interesting.
Annemarie said:This happens to me as well. The face and lip numbness lasts at least 2 or 3 hours, the numbness in my extremities can last from hours to days, and the numbness in my pelvis several hours. I do have several bulging discs that contribute to the numbness so in my case it’s not all lupus. I hope this info helps.
Annemarie. Thanks you for telling about your father. You are right, sometimes it can be something totally different. They have done a ton of tests. I will follow up with the two following my case. I do have tons of questions for them. You are right it never hurts to check on things. Thanks .
Dear hopefulforever… I mean foreverhopeful… That’s really something. One and a half years, thats has to seem crazy, that’s a long time. And they can’t find anything? You can’t eat anything but soft stuff? Wow, my heart goes out to you. Did you ever have little mini episodes before that all happened?