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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

Is RSD in the tongue possible?

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Unread 03-27-2007, 04:23 PM   #1
dreambeliever128
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Default Is RSD in the tongue possible?

This might sound crazy but when the barometer changes then my RSD comes out. Today the weathermen missed it. It was suppose to be 82. It has looked like rain all day and is cold and cloudy.

I laid down awhile ago to nap and I know I had RSD pain in my tongue. Never have delt with that. I had it in other areas also but this was weird. I have been chilled all afternoon too. I go from sweating to freezing. I woke up chilled to the bone but I was covered up.

Am I crazy or not?

Ada
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Unread 03-29-2007, 03:24 AM   #2
Bonnie1014
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Default RSD and mouth

Ada,
I've had CRPS for almost 10 years and at after my last dental appt. my mouth started burning. My tongue is on fire all the time. Food is too spicy...American cheese is spicy. I've been told that it is possible for it to spread anywhere in the body, but that has been disputed as well depending on who you talk with.
I've been told my vitamin B is too low thus causing the burning sensation in my mouth. I've had the tests and my levels are perfect. There is no other explanation than CRPS. I shudder when the doctors blame everything on CRPS because not everything is related. This I feel is.
One of the specialists at the Chicago conference last year stated CRPS can go anywhere within the human body. This is a world renowned specialist and spoke specifically about women and childbirth, thus resulting in vaginal RSD and other issues. With specialists from all over the US there they would disagree on treatment modalities. Always in good humor and with grace and dignity of course. It was validating hearing them disagree as so many pain physicians do. I feel it is up to us to be advocates and it's okay to disagree with your pain physician on certain areas. My former (former being the operative word) felt CRPS does not spread.

Take care,
Bonnie
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Unread 03-29-2007, 07:06 AM   #3
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Default Hi Bonnie,

I am so glad you came on and told me this.

Like you, I cannot eat anything spicey and I use to love spicy foods. My mother made the best hot peppers of anyone, I mean even the companies and I could sit and eat a jar with a pot of beans and cornbread. I have not been able to eat spicey foods since this started but I had never felt the pain before. I have no doubt it was RSD I felt. As you said in the vaginal area, Oh, yeah. I have doubt with it in there since my first surgery, now it is inside of me as well as on the outside in that area.

Like you, I agree that not everything comes with the RSD. I am pretty in tune with my body now and I can tell what is the RSD, Fibro, TOS, Arthritis and whatever else I am dealing with. I am amazed thought how many things do go with the RSD. Like the Fibro, it effects many things with the body.

You are right too about it being up to us to be advocates. I have learned hard to fight for what I feel is right. I didn't use to be that way but I have come a long way in that. My Dr. use to tell me that I need to get the word sucker off of my forhead along time ago, he taught me how to do that.

I don't have a pain Dr. I found that most of them around here are just pill pushers and surgeons and know nothing else. I honestly don't think most of them have been taught enough about RSD or don't care to learn due to the extent of care it takes. What I have seen around here is that people can walk in to their office for back problems, Fibro, and anything thing else going on that causes pain and they get the exact same treatments. That doesn't work for RSD.

Thanks again for helping me with this.

Ada
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Unread 03-30-2007, 09:16 AM   #4
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Default Burning tongue, gums, etc. symptoms

Yes I also have a burning tongue. I am diagnosed with RSD and Fibro. However, the burning mouth, tongue, lips, etc. came from taking liquid chloral hydrate. It burned me as soon as I took a few sips of it. Had to be hospitalized. I must say - I am getting weekly TP INJ inside my mouth and all over my face and it has toned it down. My dentist is brilliant! He swears he can get rid of it. It's been almost 3 months now and has gone from a 10 to a 5. You may find a dentist who specializes in facial pain and try the injections. There is also a condition known as burning tongue syndrome which my Dr. treats as well. Perhaps it could be that and not RSD. Who knows what it is when we have this crazy nervous system problem. It is very frustrating to get an accurate diagnosis.
Sydney
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Unread 04-05-2007, 05:55 AM   #5
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Default New here so bumped this up...

I have had rsd from wrist fracture for 3 years. Last Sept. I got a sore in my nose. Then, my tongue and the roof of my mouth became sore, like they were scalded. Then, I got nerve twitches on the bridge of my nose. My nose feels cold on the inside. Then, i got throat probs, like there was a golf ball stuck in it.
Saw ears nose and throat doc...he said sore was ingrown hair, and the sore mouth and throat issues were reflux. Bah...he didn't have a clue about RSD! Saw another doc and he said I didn't have reflux, and is trying new meds. Sore in nose is still there, but nose and mouth feel a little better. Yes....I think we do know our bodies, and I just wish the docs would listen!
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Unread 04-05-2007, 11:25 AM   #6
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Help Burning Toung Syndrome (BMS)

Actualy that should be Burning Mouth Syndrome?
Anyhoo..

http://www.aafp.org/afp/20020215/615.html

The link above has a section on medical management of BMS too.

http://www.ohiohealth.com/bodymayo.c...etail&ref=1270

hope this helps some,
Sandra

Last edited by Sandel; 04-05-2007 at 05:53 PM. Reason: corrected the syndrome name
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Unread 04-06-2007, 07:43 AM   #7
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Default Thanks Sandel!

Interesting articles!! I will mention this info to the Doc. I did go through two different treatments for thrush, with no results, and reflux has been ruled out...I have been on antidepressants, sooo...will have to look into the other causes. Thank you again!
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Unread 03-26-2010, 04:03 PM   #8
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Default RSD of tongue and Eye

Quote:
Originally Posted by dreambeliever128 View Post
This might sound crazy but when the barometer changes then my RSD comes out. Today the weathermen missed it. It was suppose to be 82. It has looked like rain all day and is cold and cloudy.

I laid down awhile ago to nap and I know I had RSD pain in my tongue. Never have delt with that. I had it in other areas also but this was weird. I have been chilled all afternoon too. I go from sweating to freezing. I woke up chilled to the bone but I was covered up.

Am I crazy or not?

Ada


Hi, My name is Lisa, I have had RSD/CRPS for almost 11 years. There has been 9 years that Im full body RSD/CRPS. Recently I experienced burning, swelling discoloration as well as ulcer and what seemed to look like I had burned my tongue. I called my dr right away and emailed a pic to his nurse. He did agree with me that this was RSD of the tongue. When I went in to have my blocks done his partner also came in. They examined me and both agrees once again it was RSD of the tongue. My dr then noticed that the pupil in my right eye was bigger than the left. Yes, another issue of RSD I had RSD of the right eye also. It swells gets really red and stays dry. Also as I said the pupil was bigger. THis disease is no doubt a monter. Im going to include a pic of my tongue with this message. You can also see it on Facebook on the RSD research and development page aswell. I pray that you are all having low pain days! My motto is "Fight the Fight"! As long as we fight we all have a chance. Awareness and research is very important in finding treatment and even a possible cure. Soft gentle hugs to you all!
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Unread 03-26-2010, 04:49 PM   #9
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Very low Vitamin B12 levels will make a tongue look like that!

I'd get tested and make sure the numbers are above 400.
Some doctors say "normal" when using antequated lab ranges.

Red beefy tongue is a classic sign.
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Unread 03-26-2010, 09:22 PM   #10
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Quote:
Originally Posted by mrsD View Post
Very low Vitamin B12 levels will make a tongue look like that!

I'd get tested and make sure the numbers are above 400.
Some doctors say "normal" when using antequated lab ranges.

Red beefy tongue is a classic sign.
My RSD is now considered whole body with internal involvement..I also have it my jaw...saw my Endodontist just yesterday...

Hugz, k

So sorry Ada that you are now feeling this... You are so nice..
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