Author Topic: Facial Pain  (Read 961 times)

SoCalGord

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Facial Pain
« on: February 02, 2019, 10:53:21 AM »
I haven't been formally diagnosed with Sjogren's yet, but I do have subacute cutaneous lupus,  am SS-A 52/60 positive, and have had swollen salivary glands for the last 4 months.  My submandibular glands are much more swollen than my parotid glands.  My eyes are dry and while I still produce saliva, my throat and esophagus are also dry.
All this week I have been experiencing a new symptom - a very painful right side of my face - from my eye down to the submandibular gland, involving both the upper and lower jaw, with the epicenter in front of the ear right above the parotid gland.  No pain whatsoever on the left side of my face.  The pain is very intense, and it feels like I have a mouthful of abscessed teeth.  I do have one cavity that I am in the process of getting fixed, but even my good teeth are painful.  I have not been able to get any relief from ibuprofen or acetaminophen.  The pain seems to be associated with an increase in the swelling of my salivary glands - the swelling is fortunately down today, and the pain has markedly abated (thank goodness!!). 
I will certainly talk with my doc about this, but am curious if anyone has had anything like this.  It seems to be neuronal in nature given its very specific regional presentation?

Thanks in advance for any thoughts.

irish

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Re: Facial Pain
« Reply #1 on: February 02, 2019, 06:54:19 PM »
I don't know much about facial pain other than the salivary gland pain that can be miserable. Try warm packs and gentle massage on these glands. The saliva gets thick and sluggish and causes pain and spasms in the salivary ducts as it tries to drain from the gland into the mouth. I make rice bags(cloth with rice in them that can be heated in microwave. It works well to hang these around the neck and wrap over the glands. Have to have heavy cloth and be careful to not overheat the rice as it can burn skin easily. You can buy these also and may be found online.

Also, I was reading about neuropathy in the face yesterday and was reminded of trigeminal neuralgia. Do a search on this condition and also use images in your wording. This might answer some of your questions. Hopefully this is some pain that will leave soon. Good luck. Irish

SoCalGord

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Re: Facial Pain
« Reply #2 on: February 03, 2019, 05:58:29 AM »
Thanks very much for the reply Irish.  The pain certainly matches the anatomic regionality of the trigeminal nerve, and I had pondered whether it could be that or not, but there seem to be some differences as well.  I do make good use of hot packs/rice bags on a regular basis to ease my submandibular gland pain but they didn't do much for this new pain.  I've never been able to "milk" my glands.
 
I got a good night sleep in last night and the pain has markedly subsided - will hopefully be able to avoid whatever it was that triggered the more severe episode.

I very much appreciate the well-wishes! 

Gord

vrystaat

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Re: Facial Pain
« Reply #3 on: February 03, 2019, 09:48:36 AM »
You may have a 5th Cranial nerve neuritis (Trigeminal neuralgia). This is the commonest cranial nerve affected by Sjögren's.
I had this painful entity early in my Sjögren's Syndrome. It eased off after 3 years, but can recur even today with Sjögren's flare-ups.
It remained undiagnosed for years. A Neurologist at an Academic Center on the West-coast finally suggested it.

See https://www.mayoclinic.org/diseases-conditions/trigeminal-neuralgia/diagnosis-treatment/drc-20353347
Sjogrens;Polymyositis;Polyneuropathy;Gastritis;GERD, Autonomic Neuropathy, Neurological complications, Trigeminal Neuralgia,Gamma 3 globulin low;Multiple infections;Brain fog; Ocular problems - blepharitis, scleritiis, dry eye,severe eye pain. Possible Inclusion body Myositis.Currently Endstage

SoCalGord

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Re: Facial Pain
« Reply #4 on: February 05, 2019, 06:10:08 AM »
Thanks for the reply vrystaat.

I do agree that it has a lot in common with TN - the regiodistribution matches as does the non-responsiveness to ibuprofen or acetaminophen.  I was a bit perplexed initially because my pain was continuous and not like an electric shock, which is how I have seen TN described.  However, after doing a bit more digging, it does seem like there is an atypical variant of TN that manifests as a more continuous pain, which matches what I was experiencing.  Fortunately feeling much. much better this week.

Again - thanks for the suggestions.

Gord

vrystaat

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Re: Facial Pain
« Reply #5 on: February 05, 2019, 07:35:55 AM »
Actually, the pain syndrome can be constant (mine was), or as painful tingling in the nerve's distribution.
The 5th nerve has three subdivisions: ophthalmic, maxillary, and mandibular.
I had two sites. I still get tingling in my right eye, and my face.

Take care. Perhaps get an MRI Scan.
Sjogrens;Polymyositis;Polyneuropathy;Gastritis;GERD, Autonomic Neuropathy, Neurological complications, Trigeminal Neuralgia,Gamma 3 globulin low;Multiple infections;Brain fog; Ocular problems - blepharitis, scleritiis, dry eye,severe eye pain. Possible Inclusion body Myositis.Currently Endstage

Nomad

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Re: Facial Pain
« Reply #6 on: February 06, 2019, 01:40:50 PM »
I ha e a very similar pain after bad dental work. I don?t talk about it much. It started seven years ago. Nightmarish.
Diagnosed as atypical trugeminal neuraligia.

I tried many meds.
I ended up on a facial cream compounded at a compounded farnacy. In the cream is : gabapentin, lidocaine and capsaicin. I had Nassau the first few days and it didn?t work all that well perhaps the first week. Then, it was like a miracle. It works well now. I only have occasional break through pain now.
You probably can find my other posts about it. M
It truly is an awful part of my life.
Wishing you well.
SLE, Sj.  Syndrome, IC, Atypical Trigeminal Neuralgia, ITP (low platelets)... Various meds and lots of vitamins. Trying to eat healthy; seems to help a little.