I am in the worse flare of my life... Say the PM today and he didnt even want to touch me... My face has been affected only one i have big flare ups and boy is the RSD hitting my face right now.. cant even chew or sleep with a pillow because the pain is so bad!!!

Thank you all again for your contiuned support!!

Pain free hugs!!

Aww, Jac... I know just what you are going through! Poor girlie... RSD in the mouth/ face... it's rough! ((hugs))!!!!

Yes, any little thing *can* potentially spread RSD. I ran (when my RSD was just in my arms) and RSD spread to my legs... it's like that sometimes.


Make sure you do eat, even though it hurts so bad! I found that sometimes mint/ menthol helped the pain, and I have gotten so desperate that I've just used oragel!!

Make sure to keep the jaw moving... it might lock on you, unfortunately. With muscle spasms there my jaw locks all the way there. I am on Baclofen and that has helped my spasms and tremors dramatically. Are you on a muscle relaxant?

Gum is a great jaw PT exercise. I use that to help keep my jaw moving. The hard thing is the jaw pain and teeth pain caused by it. Also, you might find that you get headaches from it?? I already got headaches but they did worsen with the RSD in my face/ mouth (entire head actually along with my throat).

(((PAIN FREE HUGS))). Hang in there! Keep me updated... email if you want- I sure hope this helped. I hope you find relief somewhere soon.










ETA: I found that Neurontin and Lyrica gave me the most relief from the allodynia in my throat and mouth, as well as face. Are you on either??

I suppose i do need to keep the mouth going... Its easy to say that about my arm but with my mouth and face it just makes me wanna curl up in a ball... I will start using the gum.... I hate RSD! BOOO!

Thank you all again

jacquelina,

I just read about your mouth and face pain, it sounds awful. I probably shouldn't be posting this until I can remember just exactly what it is I'm trying to tell you, but I do recall reading about compounding pharmacies that are able to make mouth lozenges called "troches" that are specifically for the mouth pain you are experiencing. I'm sorry I can't remember the exact name, it has been a while and unfortunately I don't retain info all that well If I come across it I will definitely let you know. sorry you are suffering, jenny

If you could remember i would apperciate it so much! This facial pain is horrible... i dont even want to breath because it hurts so much... UGH .... I just wish i could get rid of the mouth pain the rest i could deal with!

Thanks again to everyone!

Pain free hugs!!

Yes, it feels hard to breathe, because if you do, it will run across your face... have you tried tying a light weight scarf around your mouth (I know the contact with skin will hurt, but maybe it will be easier on you than your breath running across your face?).

HTH, sweetie!

Mouth Rinse: elixir dexamethasone 0.5 mg/5ml
1 tsp 3 times daily; hold 1 minute, then spit out

THIS IS ONE OF THEM.
THERE AR ALSO SWISH AND SWOLLOW MEDS. NOT SURE WHAT IS PERSCRIPTION AND WHAT IS OVER THE COUNTER BUT YOU CAN CALL YOUR PHARMACY.
JOAN

i have a block every 2 weeks (switching off between sgb and sympathetic) i have never had a spread problem. i have learned there is 1 very important factor when having them done...make sure the doc knowns what they are doing. i had a nurse practitioner once do a nerve block and had an awful result...my lower body ended up completely involved. the reality seems to be that in any person even with the best doc the possibility for a problem exists. as for the results following a single block, if you experience even limited positive results the procedure probably needs to be repeated. as someone else said when i first started having them done and in general my doc does 1 then another 7 days later if the improvement lasts longer than she maintains the 7 day cycle for about a month just to get a base line. if however the second in the series is less effective she tries to get patients in in 5-6 days the following time and sees if that works better. also to be considered is the injection that is being done. the ladocaine wears of more quickly...there is a blend injection (sorry dont know the name but i can find out if you would like) that works better...at least for me.
lauren

"Troches are a dose form that can be best likened to a lozenge or pastille. It is a small square shape that dissolves in the mouth. The finished troches are dispensed in plastic calibrated molds that contain an accurate and precise dosage unit. Historically, they have been utilized as mouth and throat pain relievers. They are making a return to be used for natural hormone replacement therapy (NHR), anesthetics, antibiotics, and other combinations of medicines. To list them all would be exhausting!"

Wow! Thanks for posting about these, I had never heard of them. I tried to find out info about brands here in the U.S., but to no avail. I see ones for hormone replacement and one for candidiasis of the mouth, but none for pain. I hope someone else can be of more help.

Hi Jaquelina,

It sounds as if you're describing anesthesia dolorosa, which can occur following SGBs, tooth extractions, surgeries involving trigeminal neuralgia, etc.

I hope I'm wrong. Have you discussed this with your doc?

BTW, in another thread I reported that clonidine had no known mechanism of action against neuropathic pain and no evidence that it is efficacious, but in briefly researching AD. I found one reference that reported a pilot study ...on 17 patients with oral neuropathic (pain due to nerve damage) reported that clonidine may be effective in the management of some patients with oral neurlgia-like pain. If this is AD, it may be that clonidine could help...Vic