Long long story ... as is the case with all of us so I'll try to be brief as possible. Pain in gums ... at that point I still had teeth in bottom so kept saying my teeth hurt ... back in 2005 after 8 root canals ... pain got worse over years ... dentist, root canal specialist, oral surgeon said there was NOTHING on my Xrays and I couldn't have pain in all of my teeth because they were all root-canaled ... they would say. Two years later: Got worse after a retreatment of a root canal and doctor said it would be okay now because it was probably referred pain ... needless to say ... still had "Toothache" in all of my bottom teeth. All along I knew there was something strange going on ... but no one would listen to me ... finally ... six years or so later ... was going to have all crowned and get new partials but dark spot finally showed up on one of the teeth and the oral surgeon pulled it ... I asked him if there was bone lost and he said no ... no explanation ... was told I wouldn't have pain anymore ... I knew better and sure enough I eventually could not even touch my bottom teeth let alone eat. Had all lower teeth pulled in May 2011 and the pain got worse and now have lower dentures and can not eat very well ... pain all of the time ... especially when chewing ... had RSD in wrist in 2002 and RSD in elbow in 2003 after broken bone in wrist and next year in elbow/with two surgeries. Hum, putting 2 and 2 together and think I have RSD in lower gums. Now have seen another dentist, oral surgeon, neurologist, neurosurgeon and finally a pain doctor. Brain scan, blood work, Xrays show nothing ... doctors don't even want to talk to me ... they escort me out of their offices especially if I mention that I think I have RSD in lower gums ... oh well, going into 7th year ... no one believes me ... final doctor ... pain specialist ... started me on neurontin last week ... hope this works ... thanks! Have joined multiple support group websites ... would be happy to hear from anyone who may have heard of such a situation ... thanks! Basically am fairly contented right now ... have learned to time my eating so that I get the healthiest food into my system when my mouth has rested ... it gets worse the more I chew ... very limited as to what I can eat ... other than the pain when I eat ... life's good. Retired two years ago ... pain in back and shoulderblades and neck and up into head but don't think these are related to RSD ... very serious arthritis in back ... curved spine ... but as I mentioned ... don't think they are related to the mouth thing. Any thoughts?

I want to welcome you to Neuro Talk. There are people here who will try and help you. Lots of compassionate folks here deal with RSD. Someone will be along to get you to the RSD Forum. For questions concerning your Teeth, or possible connection to root canals/ RSD trigger?, maybe Bryanna can address that issue. You can private message her, or go to the Dental forum. I do know what RSD is, and I am sorry you suffer with that. I had never heard of it in the gums before, but I'm not a doc. just a member here on NT. I try to say hello and let you know that you found a good site, where the members really try to help with medical problems. I hope that someone can answer your questions about RSD in the gums, it sounds miserable as it effects your ability to eat well. I am glad you stick to a good program of nutrition when you do eat. I know how important that is with any medical problem. There will be others who will help you navagate on this site. I still am a beginner in this dept. and have alot to learn, regarding getting people to the correct forum. Forgive me for that I am getting better as I go along. Please do keep asking questions, and the responce will be coming along. take care, ginnie

First of all msjanice12, welcome to NT. Second, sorry to hear of the problems you are having.
I have to tell you that my RSD began in the right side of my face. I bit a rock that was in my food in a restaurant. I lost my three back bottom teeth after having root canals that didn't work and then extractions. I then got implants and a bridge. The pain never went away until I found (with the help of my dentist) the doctors to diagnose and treat me for RSD. My pain was along my jawline and in my cheek area. They gave me stellate ganglion nerve blocks and got things under control. This was back in 1991/1992.
In 2009, I hurt my right hand and developed RSD there. It has since spread from there to my left hand, arm and leg. Blocks and medication didn't help me this time around (got two spinal cord stimulators implanted in 2011).
The important thing is to find the right doctor(s), which is very difficult. Be persistent and don't give up.
All the best,
Nanc

Hi MSJanice12,
It is nice to meet you. I am soooo sorry you are having such a hard time with your dental issues and no one will listen to you. Your story (or journey as I like to call it) sounds like mine. I have had full body rsd for little over six years now (7 next month) and I have had continual problems with decay (like I go to bed and have no cavity and wake up 7 hours later and I have tooth decay), root canals, crowns, etc. In the last 2 years I have spent $5,200.00 in dental stuff to try and save my teeth. Great part about it was I was told by the state I live in that I did not have dental ins and have paid for it on my own (and still owe $2,300.00) only to find out this last July that in fact I DO HAVE DENTAL INS that would have paid for all of the above since Sept 2009!! The state just neglected to tell me. Great huh? Now, I go to the new dentist and they plan on fixing my teeth due to the constant problems (and immense pain) I have with all of them and after two weeks get a letter in the mail from the state saying as of two weeks from now the state will no longer be paying for my dental needs...except for fillings. Funny thing they never sent me the letter whereby telling me I had it and now they don't forget to tell me I don't have it. Amazing huh? I now have three infected teeth on my left side and cannot chew at all on that side. One of the teeth has been infected for several months and I believe is causing more problems and pain but I could not take care of it because I did not have $1,400 to root canal it. I already have a crown and pin in it from previous dentist. Last week the loose crown that I had recemented back into my head three weeks ago just came out!!! The crown AND the post (that is supposed to be in my head). So I now have no tooth in that spot. The one next to it needs root canal and crown as it is bad too. Between them I have a horrible infection that after two doses of antibiotics doesn't stop the pain. I feel like I am living in a nightmare since I have always gone to the dentist every six months for cleanings and pre-rsd never had any cavities. NOW, it is a nightmare. I have written to the state board to have my case reviewed and for them to reimburse me for the money they should have paid (Oh and I am in financial ruin because of the dental issues). That was in Aug and they told me two weeks ago they will send me a letter. Meanwhile, I had my neuro rsd doc write a letter explaining to them why I need a exemption from them not paying my dental and they turned it down and said I should get it extracted. I have extreme pain for two weeks from only a cleaning!!! They want to pay for the extraction but not any dentures, crowns, root canals, etc. So each day and night I suffer continually. My rsd has gotten better in the last few months but now I have to deal with this and pray it doesn't make my rsd come back worse. The crown that fell out what is left of the tooth needs to be pulled and I am a chicken and can't even imagine the pain I will have to go through with on that one. So, I wanted to let you know you are not the only one having dental issues. With rsd and all the meds we take (or like me in the past have taken) it ruins our teeth. Keep on having hope and faith things will change but I wanted to tell you you are not crazy that you can have rsd in your mouth like I do and others do. Hang in there.
kathy d

One other thing I just thought of MSJanice12 was what my neuro doc suggested. She told me and another person with rsd that when our mouth pain gets bad to take a bit of brandy and swish it around in our mouth and spit it out. It deadens the pain quickly and allows you to fall asleep or rest without the pain for a bit anyway. Boy I thought it really would not work and I was surprised to find out it takes the pain away immediately!!! It just shows that sometimes the simple old-fashioned things work the best. Good luck and hope we can help you out.
kathy d

Thank you, thank you, thank you for your replies! I for sure understand how heartbreaking it is to spend all of this $$$ throughout the year on teeth ... and then as I mentioned I still had to have all of my lower ones pulled. My dental insurance was really good when I was working ... at the University of Pittsburgh for 21 years ... but I STILL put tens of thousands of $$$ in my mouth ... so far the implants on the top have been okay ... knock on wood ... but when I turned 65 ... the dental insurance that Pitt offers the retirees is horrible ... but then I don't have any on the bottom to spend money on anymore ... so I guess that is one positive thing? Ha Ha.

I would NEVER had been able to figure out what was going on if I hadn't had my teeth pulled ... would have continued to have crowns and partial plates, etc etc ... also, lucky for me that in 2002 when I broke my wrist and in 2003 when I broke my elbow ... my sister was my physical therapist ... I wouldn't allow my first PT to work on me ... I was screaming and screaming when she just touched my arm ... so my sister took over and immediately diagnosed me with RSD ... I loved the Brandy suggestion ... will try that ... by the way ... this is my eighth day on the neurontin and I believe it is helping my pain a little teeny bit ... I ate an egg sandwich this AM and didn't cry after I ate it ... so I think something is working ...

I think the lack of compassion by the medical professionals has been worse than the pain ... well not exactly ... but it comes in second to the pain.

Hi I am sorry about your pain. I don't have it in the mouth but I believe from others and myself with it in areas not just in the limbs it can go anywhere. I probably have it in my eyes and it took going to 10 eye specialists,neuro,etc plus 50 apts in a year to figure that out. I have rsd in my legs and now maybe in the neck/back. Now I have seen many rsd specialists even top ones like at Cleveland Clinic seem to brush off areas of rsd not in the limb. I do feel and of course I am not a doctor but a treatment that can help the limbs could help other rsd areas like organs,mouth etc.
Hope the neurontin helps. Give it time because it can take a high dose or a combo of meds as well.
As for doctors compassion I cant tell you how many times I have left crying from the lack of it. I try to just regroup,vent to someone,and then move on. It is hard but I have started to learn that I can't handle more on top of the already in terms of stress etc.
Hang in there

I have bodywide rsd and have like most people with this tried many things to get better. I lost a healthy tooth when rsd was inmy mouth so I know how painful it is for you. I cant seem to help the pain and my back is now crippled with my attempts to stop the pain. I took seretonin and in one night my legs and arms went from vague to Stage 3. I have had this for 17 years but its got very aggressive in the last 3 months.My BP is now 200/135 so why am I still here ? Can anyone help the British Doctors are not up woth this!

Thank you again for more postings! By the way, I mentioned before that I started on neurontin 9 days ago for the pain in my mouth and the pain that I've been having in my shoulder blades, neck and head has decreased significantly ... so maybe that pain IS related to my RSD? In my first posting I said I didn't think it was ... but now I do think so. The pain in my lower back hasn't changed since I started on the neurontin but I know that I have arthritis in the back so it probably wouldn't help that? I'll be in touch ... this is the only support group that has interacted with me on my postings ... since I'm retired ... I don't get on the computer every day but will still check in often.

Regarding having RSD in the eyes ... wow, if it took me almost 7 years to get to the bottom of my dental/gum pain ... I definitely can imagine what you must have gone through to get someone to listen to you! And if you've had RSD for 17 years, I can also imagine what you've gone through.

Just wanted to jump in and welcome you to NT and to tell you that I am very sorry for what you have gone through and are going through. I hope that you are able to find some relief soon. RSD can be anywhere in the body and it is sad that so many doctors are so misinformed about it. I need a lot of dental work and I can honestly say that I am scared to have it done because I cannot imagine having this pain in my mouth. It spread from just my ankle to my whole upper body...everything between my waist and neck including arms and hands and I do NOT want it anywhere else thank you very much. So any kind of procedure scares me...even dental ones. But I have to bite the bullet soon and just get it all taken care of.

Anyway...good for you for continuing to fight for the care you need. It's so sad that it has taken this long to find anyone who will take your issues seriously...especially if you have been diagnosed with RSD before. But so many docs are just uninformed when it comes to RSD...even some of the ones who say they have treated many patients with it.

This is a great forum and if you ever have any questions or even if you just need to vent, please feel free to post. I have learned so many things from the other members that have helped me to get better, to cope with the pain, and to learn how to function and do everyday things with my limits that I have because of the RSD. I don't know what I would do without this place. Welcome.