It felt like I had a cold sore starting, but nothing was there, and the area started to expand and also feels somewhat numb as well over the past week. I started having spread to my jaw about a month ago, when I had issues getting my meds filled. A few times it started moving across across my teeth, and after increasing my meds, my teeth calmed down, but the jaw remains an issue. I can only eat soft food and it hurts too talk very long. Joy...

The tongue is a different sensation, though. Anyone who's dealt with spread here, I'd appreciate a description and any ideas on how to manage.

I'm used to using Lidocaine patches to deal with flares in new areas. Not possible in this area. My doc is trying to get a sympathetic block approved.

It is the weirdest sensation ever! My tongue back of throat, teeth, jaw, eyes, etc. It does seem to come and go. At least once every 6 wks I will have a bad flair in this area. My RSD Started in my leg. There’s just nowhere off limits now. Meds, meds, meds…. Oh but I did find a good mouth wash that helps my gums A LOT called Perio Wash, with CoQ10 & Herbs. Cool mint flavor. Found it at the health food store & vitamin shop. My gums get real irritated and this helps wonders! The back of throat and tongue.. I have not found anything that works other than regular meds and rest. I posted a pic of the Vegus nerves, on the other thread you had. I’ll post it here too. I sure hope you get some relief quick!

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Just wanted to say, I really hope you are not getting rsd of the tongue or mouth. I pray for are group constantly and will say a prayer esp. for you.

Hi LITLOVE!

I've had RSD in my tongue for a few years now.

It started in one spot, stayed there for a while, then began spreading.
My tongue now feels like it is full of pins & needles all of the time.

Drinking anything with ice or too hot launches my pain levels through the roof.

Eating isn't much easier! Room temp drink & food is boring but less painful.

I wish you the best.
Abbie

Thanks Abbie. It's coming and going in both my tongue and teeth. And you are absolutely right about hot and cold food and drinks setting me off.

Do you have trouble talking? In addition to it hurting from talking, I'm definitely mumbling. Speaking of pins and needles...it almost feels like my tongue is falling asleep???

Unfortunately mine has spread to my mouth, tongue, throat, etc. It's a strange burning, tingling, raw feeling, and yeah cold and hot hurt like crazy. Years ago a medicine caused thrush in my mouth...3 times before my doc finally took me off of it. Since then, thrush would come back easily if I was on antibiotics or used my inhaler. I haven't done either in over a year, so I knew this wasn't just thrush coming back. Not to mention it felt totally different. Now I find myself letting chips, cereal, crackers and such soften in my mouth before trying to chew them...though I forget sometimes and pay the price. I can only take sips at a time now, too, without causing major pain issues that set off a cataplexy reaction. Not fun at all.

Exactly... my tongue always feels like it's falling asleep.

When I first wake I sound like I am slurring my words something fierce. This can last for a few hours to all day. RSD also is down my throat....It's terrible. My voice will change pitch from low to high...back and forth all day. I know it's related to the RSD as it doesn't hurt...it's just annoying.

I used to be the first one done eating as I hated sitting at the kitchen table. Now, I'm the last one done....as I have to let my dinner cool, my drink warm, and time for me to adapt to it all.

I love spicy foods....but my tongue hates them now!!!! Don't know for sure what the issue there is... RSD related??? Not sure but my guess is yes.

If you have any other questions shoot them my way... I'm no expert but I will let you know how I handle things..... I have RSD from Head to Toe and everywhere in between. Inside and out.

gentle hugs
Abbie

As if my body didn't already encourage me to be a hermit, I'm finding that things calm down when I avoid speaking for a few days. Hoping I can get quick approval for more Ketamine and/or a block to at least put this area back to normal asap. This is an area that is impossible to ignore.

Thanks again for sharing ladies!

I have been in a severe flair the past 4 days, and i relised it was effecting my throat, today its full force, my voice is very raspy and its all VERY diffrent! For a little while now ive only been able to drink and eat things room temp. Now i think this is the problem. Any suggestions? Im hoping its just part of the flair and it will calm down.