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)


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Old 01-13-2016, 09:26 PM #1
Inspiretoday Inspiretoday is offline
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Default CRPS in mouth

I am writing to see if anyone has CRPS that has spread to their mouth/nerves in their teeth. This happened to me back in August and I've been trying to get dental work done but have been unable. I am working with the medical center that did my ketamine infusion (it's a university based hospital so they have a dental clinic). Right now they are trying to get insurance to approve the Operating Room option Bc no amount of numbing helps when they are drilling and trying to fix cavities that were caused by side effects in the medications.

Just wondering how others may have dealt with this and what treatment options could be available. The ketamine infusion helped but stress has escalated the flare in my mouth. Any suggestions are appreciated!
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Old 01-13-2016, 10:20 PM #2
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I just wanted to say I am thinking about you and sending good vibes. I pray that all the details get worked out so you can get the care you need as comfortably as possible.

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Old 01-13-2016, 11:26 PM #3
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Default Ditto for me Inspiretoday :)

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I just wanted to say I am thinking about you and sending good vibes. I pray that all the details get worked out so you can get the care you need as comfortably as possible.

Just as Littlepaw says "I pray all the details get worked out".

I have SFN and it's been giving me problems about once a week in my gums and teeth. I didn't think about it until I read your post but I guess it is the nerves to the teeth that are being effected by my SFN. When it hits it is like a horse kicked me in the mouth !

I haven't had my teeth cleaned in almost 3 years since this started and I'm scared to death to have it done. But I know I'm going to have to break down and just do it.

Take care and wish I could offer some suggestions.

Debi from Georgia
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Old 01-14-2016, 11:59 AM #4
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i have had rsd in my mouth for almost two years now. i am sorry you have it too. i was getting extra novacaine, then extra novacaine and laughing gas, to getting some of my teeth pulled because i couldn't take the pain, infections, dental procedures or root canals done anymore. i am looking into one last option before i think about getting all of my teeth pulled in the back and getting bridges. it's called sedation dentistry. i don't know if insurance will cover it but i figure it's worth looking into. i learned about it from others on this forum and hope maybe it might help you too. from what i understand you are put to sleep while they are working on your teeth and you don't feel or remember anything. i hope that whatever you decide to do you find some pain relief from the rsd in your mouth. sending healing thoughts and soft hugs your way.
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Old 01-14-2016, 08:49 PM #5
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Quote:
Originally Posted by Inspiretoday View Post
I am writing to see if anyone has CRPS that has spread to their mouth/nerves in their teeth.
...
Quote:
Originally Posted by Inspiretoday View Post
I am working with the medical center that did my ketamine infusion (it's a university based hospital so they have a dental clinic.
Dear Inspiretoday,

I'm sorry to learn of the challenges you are facing due to RSD. Like you, I too have RSD in my mouth. In fact, along with my head, face, ears, neck and lower back, my mouth (and everything in it) was one of the places where my RSD began. It, as you know, is not an easy thing to live with.

Where I got lucky is that, like you, I have been working with an academic medical center with a strong dental school. For the past 5 years, I've been a patient of one of the Oral Medicine doctors who specializes in orofacial pain and has an expertise in the trigeminal nerve (cranial nerve V). Is there an Oral Medicine department at your University Dental Clinic? Or an Orofacial pain specialist? If so, I would recommend making an appointment for a consult.

In all candor, the Oral Medicine doctor I see has been more knowledge about and been more willing to treat my RSD than most Pain Management doctors I've encountered. Perhaps I just got lucky. Then again, I prefer to think it has much to do with the fundamental role of a doctor of Oral Medicine - to bridge the fields of Medicine and Dentistry for patients with complex, systemic diseases that have oral components.
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Old 01-14-2016, 09:52 PM #6
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Yes I am certain a horse must have kicked me in the face!! At least it's how I feel! Thank you everyone for you kindness. This has been a challenging week but I have to trust these dr's which can be hard after my track record. They are putting a lot of time and energy into the plan. I feel like I'm paving the way for all CRPS to come.
RSD Me I tried getting sedation through a dental office and it was 7k!!! That's why we are trying this other route with the OR so the insurance pays. Good luck with yours... This is the worst pain to have it right near your brain!! Ughhhh
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Old 01-15-2016, 06:49 AM #7
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I too have RSD in my mouth. It causes in me constant Dry mouth which is NOT good for the teeth. I have pain where i should NOT be experiencing pain. I have severe acid relux/indigestion which the acid then attacks my teeth and at nite i have stomach acid rise up and i inhale it ...THAT is really...^%$#, to say the least. When u have root canal the nerve is removed so technically not able to feel pain in that tooth and having work on it should require no numbing. I went to dentist with filling falling out and PAIN in it. I needed 3 times normal numbing so he could drill it. I too am needing more numbing then when first started having rsd tooth issues. My fillings dont stay in and When i previously 5 months ago had an xray a particular tooth showed NO none at all tooth decay. Then tooth was keeping me awake, xray showed extensive, untreatable decay. Tooth was infected as well so had to be pulled. Unable to totally numb i sat there phsyc'd up and just took it. At least denist works quickly for me. I now have 4 teeth removed in about 8 months on one side of mouth. In Australia since i am on disability we have a dental clinic and pays for extractions and fillings 4 vouchers visits per year. My dentist also learnt about rsd in mouth and bought that when i visit him, he is very caring about it, works quickly for me and uses the extra numbing to begin with to help. He has also acknowledged for me the issues with my mouth IS RSD
I feel for anyone with mouth rsd, it isn't just a case of pain in it...many other issues arise causing faster decay etc I feel for YOU inspiretoday
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Old 01-30-2016, 07:42 PM #8
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Default weeks later

After emergency visits and painful weeks my insurance approved to allow me to be in the Operating Room in order for the dentist to do some repairs. The "emergency surgery" will be 2/9. Not sure how that constitutes an emergency but that's what they are calling it. I was informed I would lose a few teeth because I no longer am able to stand root canals. I am devastated because I have ALWAYS taken great care of my teeth. I have invested in dental care all my life and now because of CRPS I will lose some of them

I am ready to have one of the teeth pulled as it is still hurting fierce even after 2 weeks of antibiotics. I am also ready for the existing problems to be fixed and for the CRPS flare in my mouth to subside.

All of this BS has made me have to cancel a trip to Bali that I had planned for February. Because of the timeline and pain I will no longer be able to accompany my boyfriend home to meet his parents in Indonesia. Once again CRPS ruins the day. Feeling pretty angry about this one.
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Old 01-30-2016, 07:53 PM #9
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Ugh, it's a good news/bad news day. I just read your ketamine thread and now this one. I'm so sorry you have to cancel your trip. You must be terribly disappointed. Your boyfriend too....

I hope your procedure goes smoothly and takes care of your mouth pain.

Sending thoughts of healing and comfort.
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Old 02-05-2016, 04:52 PM #10
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Default CRPS in mouth!

I have been dealing with severe dental problems for the last 3-4 years! On Medicare so its not covered where I go! Since all the nerves are affected by this CRPS my teeth always need bonding and a lot more done its getting to the point that the other day when I was flossing my teeth 1 tooth just popped out and I had about 1/4 of the tooth left. Also want to know if anyone on this site has a white coating on their tongue? One last thing I have to pay for this special tooth paste called SF 5000 Plus with 1.1 sodium fluoride which also is not covered by my insurance. It is half the size of a normal tooth paste! Cost's about $24.00 per tube. Just have this gut feeling that eventually I will loose all of my teeth! Not very upbeat but just having so many problems! It seems like 1 tooth gets bonded and by the next few weeks another one needs it! Hope that others are not having this problem! Breezy55
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