Has anyone ever had any issues with nuerological pain? It's constant and severe in lower facial area on one side, then there is the very sharp short twinges of pain near the tmj area and cheek on the same side. Been going on for wks but usually gets a little more tolerable with motrin but I took 5 last night and nothing has changed. I'm thinking of just going to the ER since I can no longer go to my rheumy (long story, in a previous post) and the clinic will take maybe a week to get appt then she will send me for an xray, etc etc etc. Could be several more weeks like this :(
Very frustrating. I would got to emergency room and force their hand. It could be something important.
Thomas Franklin
You also might want to go to the dentist TMJ syndrome can present this way
Hi,
Yes, I went to the E.R. when I first got this and the E.R. doc is who diagnosed me. Have you been checked for TMJ disorder? If it's not that, this is a pretty common problem called trigeminal neuralgia. It's considered one of the most painful conditions a human can have.There's a Ben's friends site for it (just like life with lupus). It's at www.livingwithTN.org. When you join, go to the tab across the top that says 'facial pain info'. You might want to Google it, but the wikipedia article about it is full of wrong information, so ignore that article. Living with TN has more information about it than any one neurologist knows. I have taken info from there and taught my Dr. about it, since they are taught almost nothing about it in medical school.
TMJ common in lupus. Mine presented as severe earache. I have had neurological pain in the face as well. It present as twinges of sharp pain that come and go. Lyrica is helping with the nerve issues I have. Only issue with Lyrica is it makes my legs jumpy. To help my severe TMJ, I was fitted with a bite guard that I was forced to wear constantly for weeks, then every night while I slept for months. I now can tell when I need to wear the bite guard based on experience.
i get facial ticks all the time, my rhuemy just said it was part of having lupus, what i want to know is do they blame everything on lupus? my back is severly damaged, and the lupus makes it worse.....i take major pain meds 2 oxy 80's a day and 5 15mg oxycodone for breakthru pain....it is for my back and the llupus, but it barely takes the edge off,,,,my father died from complications due to lupus( pnuemonia) i have had pnuemonia about 5 times this year, it always starts out as a cold , but the lupus attacks and then i get it.......maybe you should try some stronger pain meds, also i find that xanax helps with the facial spasms....purrs..catspaw1955
I have had pain and numbness andt sharp pains contant,it will be 2 yrs next month,ive been to every specialest u can think of and just about every test no one can pin point the problem,it stinks,i have so much pain and i cant eat alot of things cause it hurts,but my rhumy,who is with cleveland clinic says in no way is it related to my mixed connective tissue desease,one of which is lupus,so im at my wits end,if u get it figured out please post on here and i will do the same.i hope u get an answer soon,i would not wish this pain on my worst enemy.good luck,
It is frustrating that no one can give u an acceptable n direct answer. I’ve been suffering facial nerve pain on my left cheek since 2011 aft completing a root canal treatment. Been to 3 diff dentist n finally orthodontist n had total 3 root canal treatment done on same tooth. Finally diagnosed with lupus jan this year n confirmed by neurologist in June tat lupus has affected my trigerminal nerve. Only lyrica is giving me temporary relief and I’m worried abt the effects of lyrica when I try to conceive. Hope this helps in some ways.
Thank you, I will look into that, hoping they can prescribe something from the ER so I don't have to wait for appt at the clinic, as to answer your chat question, I was diagnosed in Jan of this yr, how long? who really knows, makes you guestion so many other things you may have had or have and wonder if it is connected.
catspaw1955 said:
i get facial ticks all the time, my rhuemy just said it was part of having lupus, what i want to know is do they blame everything on lupus? my back is severly damaged, and the lupus makes it worse.....i take major pain meds 2 oxy 80's a day and 5 15mg oxycodone for breakthru pain....it is for my back and the llupus, but it barely takes the edge off,,,,my father died from complications due to lupus( pnuemonia) i have had pnuemonia about 5 times this year, it always starts out as a cold , but the lupus attacks and then i get it.......maybe you should try some stronger pain meds, also i find that xanax helps with the facial spasms....purrs..catspaw1955
Yes this does help. I have occasional nerve pain in that area in the past, every now and then and I did try a dentist but they did not see anything. I do think that it may definitely have something to do with the trigeminal nerve, hoping to get a chance to get it looked at soon.
HevLee said:
It is frustrating that no one can give u an acceptable n direct answer. I've been suffering facial nerve pain on my left cheek since 2011 aft completing a root canal treatment. Been to 3 diff dentist n finally orthodontist n had total 3 root canal treatment done on same tooth. Finally diagnosed with lupus jan this year n confirmed by neurologist in June tat lupus has affected my trigerminal nerve. Only lyrica is giving me temporary relief and I'm worried abt the effects of lyrica when I try to conceive. Hope this helps in some ways.
Funny, from my research this is what I suspected and there are a few people on here who responded with the same issue with the trigeminal nerve, guess it could definitely be that. I wasn't sure if there was any connection to lupus but it seems that it is, thank you.
HevLee said:
It is frustrating that no one can give u an acceptable n direct answer. I've been suffering facial nerve pain on my left cheek since 2011 aft completing a root canal treatment. Been to 3 diff dentist n finally orthodontist n had total 3 root canal treatment done on same tooth. Finally diagnosed with lupus jan this year n confirmed by neurologist in June tat lupus has affected my trigerminal nerve. Only lyrica is giving me temporary relief and I'm worried abt the effects of lyrica when I try to conceive. Hope this helps in some ways.
Thank you, I will keep you posted, also you should read some of the other responses on here as well. I think you will find them to be very helpful, as did I
foreverhopeful said:
I have had pain and numbness andt sharp pains contant,it will be 2 yrs next month,ive been to every specialest u can think of and just about every test no one can pin point the problem,it stinks,i have so much pain and i cant eat alot of things cause it hurts,but my rhumy,who is with cleveland clinic says in no way is it related to my mixed connective tissue desease,one of which is lupus,so im at my wits end,if u get it figured out please post on here and i will do the same.i hope u get an answer soon,i would not wish this pain on my worst enemy.good luck,
Thank you for your response, very helpful. I have had concerns that it may be the trigeminal nerve, I don;t believe it is TMJ however. I had an issue many yrs ago with that from a car accident and it was very different from this issue I'm having, but you never know!
Sheila W. said:
Hi,
Yes, I went to the E.R. when I first got this and the E.R. doc is who diagnosed me. Have you been checked for TMJ disorder? If it's not that, this is a pretty common problem called trigeminal neuralgia. It's considered one of the most painful conditions a human can have.There's a Ben's friends site for it (just like life with lupus). It's at www.livingwithTN.org. When you join, go to the tab across the top that says 'facial pain info'. You might want to Google it, but the wikipedia article about it is full of wrong information, so ignore that article. Living with TN has more information about it than any one neurologist knows. I have taken info from there and taught my Dr. about it, since they are taught almost nothing about it in medical school.
I know what you are going through. I had TMJ yrs ago from car accident and wore mouth guard for a few yrs. This I am feeling now is quite different but I guess it is always possible it could be connected somehow, thank you.
Steinfadt1 said:
TMJ common in lupus. Mine presented as severe earache. I have had neurological pain in the face as well. It present as twinges of sharp pain that come and go. Lyrica is helping with the nerve issues I have. Only issue with Lyrica is it makes my legs jumpy. To help my severe TMJ, I was fitted with a bite guard that I was forced to wear constantly for weeks, then every night while I slept for months. I now can tell when I need to wear the bite guard based on experience.
Trigeminal neuralgia (TN) and TMJ syndrome (Temporal Mandibular Joint syndrome) are 2 different things, so if you have only checked on one of those conditions, you should look up the other one too.
patresha said:
Thank you for your response, very helpful. I have had concerns that it may be the trigeminal nerve, I don;t believe it is TMJ however. I had an issue many yrs ago with that from a car accident and it was very different from this issue I'm having, but you never know!
There are many facial nerves and any can be affected by neuralgia and neuropathy. The damage can sometimes be corrected, but if it is caused by disease or injury, it may be permanent, even continuing to worsen. Not hitting the panic button, but this needs to be taken seriously. There are specialists who deal only In facial pain. There used to be an online diagnostic tool to help, but it’s under construction they tell me (over a year now).
I’m scared to death mine won’t be a surgical case. Has had me contemplating why I choose life every day. It has to stop soon. It just has to. Many years ago it was only on my right side. Suddenly it hit my right side too. It affects my eyeballs, jaws and l chin, inside my ears and by my tonsils and down my throat. Triggers are cold and pressure. I sleep sitting up these last 3 or so years, and winter is the worst time for me. An ENT thought it might be hyoid syndrome, but we can’t find a doctor who will see me for it. Lupus seems to be a wastebasket disease. Everything weird gets put there, and if a patient is complicated, they end up there too. 
Well, it won’t let me edit my goof. The right side came first, followed about 15 years later by the left side.