RSD in Mouth?

I get lost on these websites but i hope my message will help someone out there. I've joined several and also have a hard time keeping my passwords straight ... hope this gets to the people who mentioned dental problems which may be associated with RSD? I think I have it in my mouth but have been to dentists, oral surgeons, root canal specialists, general practitioner, neurologists, neurosurgeons, and pain management doctors. Had pain in lower teeth for six years following 8 root canals treatments and the pain got worse and worse after each dental procedure. Finally couldn't even touch my bottom teeth and after spending tens of thosands of $$$ on my teeth I finally had my bottom teeth ALL pulled in May 2011. Was so shocked when the pain got WORSE and WORSE ... and I don't even have teeth in the bottom! Got dentures but can barely eat ... one neurologist finally put me on neurontin and it has helped a little bit ... I think I have RSD in my mouth because I had RSD in 2003 in my elbow after breaking it and having two surgeries and in 2002 when I broke my wrist. Only my physical therapist will acknowledge that I had it. When I mention RSD to the other health care professionals they escort me out of the door. Even the neurologists I have seen act like I am wasting my time and I have learned not to even mention RSD to them. I'll continue the neurontin and keep on researching. By the way, they continue to do blood tests, xrays, and even a brain MRI and they are so surprised when nothing shows up in these tests. Makes me even more certain that it is RSD. Sigh. I can't help anyone with this issue or give advice but I myself feel a lot better when I see other people suspect that this is what is going on in the mouth.

Report post

8 replies. Join the discussion

Msjanic,
I have lived with this monster for 4+ years.

Have you tried to see an RSD/CRPS specialist or someone with a history of treating RSD/CRPS? Most doctors have very little to no experience with RSD/CRPS.

Besides pain, do you have any other symptoms? Tell me about your other problems, even if you don't think they are related. It isn't called Complex Regional Pain Syndrome for nothing.

Some good sites to research at are: RSDHope.org, RSDS.org, RSDFoundation.org, and rsdrx.com.
Reta

Report post

Terrible pain in your lower teeth/jaw, yes! Try using liquid max strength oragel, using a q-tip across you teeth and gums. Its not your imagination. They cannot find anything wrong with my teeth, gums, jaw.....and when the pain starts it grows to unbearable. That stuff is the only thing to stop it. I started doing some neck exercises and when I went to PT for my low back (ankylosing spondylitis) I had the doc include my neck on the script. I have huge knots in my muscles in my neck and shoulders, up the back of my head, muscle spasms....some probably from herniated degenerative changes in the spine/disks in multiple levels. Hmmm, so I think this must have pinched something and despite the fact that everyone says 'nothing goes into your jaw and into your front teeth and would cause pain there', guess what...using a TENS unit does stop some of that pain, using an inversion table stops some of that pain, doing neck exercises (heat and massage, muscle relaxants for spasms) stops some of that pain.

Hope that helps or give you some ideas.

Report post

I was thinking about your situation and was wondering if anyone had mentioned Burning Mouth syndrome? Here is a list of the symptoms from the Mayo website.
Reta

Symptoms of burning mouth syndrome include:

A burning sensation that may affect your tongue, lips, gums, palate, throat or whole mouth
A tingling or numb sensation in your mouth or on the tip of your tongue
Mouth pain that worsens as the day progresses
A sensation of dry mouth
Increased thirst
Sore mouth
Loss of taste
Taste changes, such as a bitter or metallic taste

The pain from burning mouth syndrome typically has several different patterns. It may occur every day, with little pain when you wake but becoming worse as the day progresses. Or it may start as soon as you wake up and last all day. Or pain may come and go, and you may even have some entirely pain-free days.

Whatever pattern of mouth pain you have, burning mouth syndrome may last for years. In some cases, though, symptoms may suddenly go away on their own or become less frequent. Burning mouth syndrome usually doesn't cause any noticeable physical changes to your tongue or mouth.
(http://www.bing.com/health/article/mayo-MADS00462/Burning-mouth-syndrome?q= burning+mouth+syndrome&qpvt=burning+mouth+syndrome)

Report post

I too have had RSD in my mouth. I lost a lot of teeth plus the burning was terrible. My doctor, Dr. Hooshang Hooshmand (now retired) recommended that I swish with Milk of Magnesia, it cools the mouth. Check out this website with his info www.rsdrx.com

Report post

It is absolutely possible to have RSD/ CRPS in the mouth area. I had a root canal years ago, suffered on and off with severe pain issues, went back and forth to the endodontist who tried reworking the root canal procedure, including doing an apicoectomy (sliced open the gum line, "cleaned out" root/nerve area) and put in 3 stitches. This only sent me further into agony. Ten months later, the doc refunded all my money ($937) because he was absolutely confounded as to why the problem of pain persisted. And no, I didn't even ask for a refund...he felt bad about his expert skills somehow being at fault (he was a renowned endodontist in the state).

Later, I had CT scans and X-rays but the docs could only find one nerve that looked a little troublesome, and it was on the opposite side of the root canal. Ruled out other diseases, finally settled on RSD/trigeminal neuralgia possibility. I use Sensodyne toothpaste or Toms of Maine only and this has helped some, but not much.

Fast forward...now I have to take muscle relaxants, pain relievers and have nitrous just to get my teeth cleaned. Even then, I hurt for weeks or months afterward, pain on the scale of 4 to 8 if 10 is the highest.

So I can well imagine your frustration! It must be complete agony to feel like you have done everything you can, even taken drastic measures, in order to reduce the pain but it is still out of hand.
May I recommend that you see a teaching hospital/university/dental program? There are pain management clinics, neurologists and so forth who would probably be interested in your case and they can help get answers and some kind of relief. There are things that would need to be ruled out, such as cancer, infection, cysts, nerve impingements, nerve malformations, etc., before you get to the RSD/CRPS diagnosis. You want to find out what it is not, and then find out what it is.

Keep looking! Do not give up! Research online, and then call, call, call. It took me over 13 docs to find answers. I am not pain free, but I do have coping tools in place now, thanks to a pain management team that I saw for 16 weeks...years ago! But what I learned from this team has kept me alive and sane and mostly able to function. Stay strong! keep searching.

Report post

You can have amplified pain, anywhere!!! Since you already have a history of RSD, it most likely is amplified pain.{ This is what these pain syndromes are referred to now by the medical community} Most doctors who speciallize in this treat by frequent meals and chewing to break the abnormal nerve impulses. and to desensitize. Not an easy thing to do but very effective in many people. Gina RN

Report post

Hi Janice -
So sorry you're in so much pain. I too have suffered from RSD/CRPS since 1995 & would like to share my experience wirh you in the hopes that you will know that you are not alone in what you're going through. Before I was diagnosed with RSD/CRPS, I had an accident that required me to have spinal fusion surgery & surgery to repair a torn rotator cuff. Then I was diagnosed with Fibromyalgia. I went to pain management & was put on some very strong narcotics for many years, the side effects of them caused me to have severe dry mouth. Shortly thereafter, I was finally diagnosed with RSD, by a neurologist who is famous for his work with RSD/CRPS. I began my ketamine infusions. In the meantime, I developed horrible burning in my mouth & tongue. Foods that were not at all spicy caused my mouth & esp. my tongue to burn, & the burning was extremely painful. To make a very long story short, the dry mouth became so bad that my teeth all developed cavities & I required an enormous amt. of dental work - this eventually led to me losing all of my natural teeth & having dentures. I can relate to what you said about the dentures really hurting you, for they hurt me - alot. I ended up getting an entire mouth full of dental implants, upper & lower. I developed a very bad infecion from that surgery, which led to osteomyelitis of my lower jaw. I almost lost my life, so I guess you could say I've had my share of pain & suffering. After all of this, I am left with what I know to be RSD in my mouth - I have severe burning from foods that aren't spicy - even soda burns my mouth. I cannot use mouthwash with alcohol in it, for it burns terribly. I'm always sucking on Cepacol lozenges, for they have 20% benzocaine in them & they help a bit. I also use the Anbesol pre-filled swabs as well. Any time you have an injury to a part of your body, there is a risk of developing RSD/CRPS, which sounds like what happened to you. I know what you're going through - burning pain of the mouth & tongue is just awful. My dentist prescribes me something called "Magic Mouthwash" - it has Milk of Magnesia & Lidocaine mixed together in a bottle - you swish with it, hold it in your mouth, then spit - it coats the tongue & surrounding tissues & does help, even if only temporarily. I found that acceptance is the key to happiness for me, in that if I accept that there is currently no cure for RSD & that my tongue/mouth will always be like this, then I can do my best to deal with it & move on, living my life to the fullest;
I hope my story has helped you, even if only to let you know that you are NOT alone in your suffering & your condition. Wishing you many pain-free days ahead...

Report post

Hello again to everyone. Haven't been on this website for a long time. Mouth under lower dentures is still painful but the gabapentin has helped the pain ... about 50% ... thank you for the above responses. Here's what is new with me. (SweetRebel will identify). Was in emergency room twice in February ... shortness of breath ... they checked my heart and sent me home ... was incapacitated for two months. Had multiple tests, stress test, EKG,s, chest Xrays, blood work, endoscopy, etc. etc. ... doctors didn't find anything ... just like what I went through with my mouth ... kept telling me there was nothing wrong with me ... shortness of breath got worse and then I had shoulder blade and chest spasms, pain up back of neck and horrible headaches, and eventually it progressed down my arms ... finally went to a pain support group and they suggested a pain management doctor and he did a neck MRI and total body scan and nerve conduction test (that hurt!) and found that I have pinched nerves inbetween C5 and C6 and between C6 and C7 ... bone spurs, degenerative discs issues, spondylosis .. or however you spell it ... have had two cervical spine epidurals and pain has decreased about 50% so I am back to myself ... at least as far back as I can probably ever be ... but mouth pain is still at about a 5 out of ten and guess I am learning to live with it ... only hurts when I chew! Doing traction every night for neck ... sister is a PT and she gave me a traction device ... Alley Cat: Do you now wear dentures? Actually, I guess I should ask ... can you wear dentures or did you keep the dental implants. I met a woman at the pain support group who lost her teeth to RSD/CRPS or whatever 13 years ago and hasn't been able to wear dentures at all ... thanks to all of you again ... if you don't hear from me for awhile ... it doen't mean I'm avoiding anyone ... I eventually read your comments. Reruho: I only have the pain under the dentures when I chew and it has been consistent for a year since I had my teeth extracted. Only the gabapentin has helped but an increase in the dosage doesn't seem to make it any better? Have a relatively painless Memorial Day!

Report post

This journal entry is closed to replies. We close all journal entries after 90 days.

If there's something you'd like to say, here are some things you can do:

Things you can do