RSD Outreach awareness

Sister and I just realized that you can have RSD in Mouth!

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I'm so sorry to hear this and hope your daughter's situation gets brighter soon:)

Post  byrd45 on Tue Aug 13, 2013 4:18 pm

Hi Teresa,
I'm so sorry to hear what is happening and I wish I could say that RSD doesn't spread to the mouth but I am aware personally that it does. There are no easy solutions for any of us that is for sure but the only things I have found to help me is to stay as positive as you can no matter what is thrown at you. Try to get your daughter to be as active as she has the ability to be so atrophy won't set it. It is really hard because of the pain you want to literally stop which makes things so much worse. It is a real balancing game every single day. I can definitely relate to how difficult and challenging it is especially without her having a doctor's care. Don't lose hope things have a way of working themselves out in life. Take it from me I have been through so much with this disease it has almost taken my life twice already. The second time was just a year ago and they had to do surgery on me which is a horrible thing for anyone with RSD. Tell your daughter there is always hope no matter what. It is a year later I still have full body RSD in fact it has spread some due to the surgery but after that experience I found a way back to my life. I realized life is too short to let this thing decide what I can and cannot have. I'm still sick but I'm following my dreams and I spent ten years convinced they were lost forever. I'm an artist now first and sick second and every day I fight to keep my mind on what I want and push through the pain to create it no pain killers. The pain can drive you crazy when you focus on it. The only things I have found to help are meditation, visualization, laughter(releases endorphins) any activity you enjoy works also, music too, and rekei. The last one rekei I honestly did not believe it or the meditation and visualization until I really tried them. As for Rekei I myself have had only one session because I don't have the money for it. $35.00 a session with my insurance but I had to know if it really worked. It did for me for days afterward my pain was amazingly reduced. The other things like meditation take it away for a little bit but any break is a good break especially during a flare up. As for the RSD and having it in the mouth what I've noticed is pain in my jaws, roof of my mouth, and burning as well. It hurts to eat and is sensitive especially to cold foods or drinks. When it flares bad my gums bleed and the roof of my mouth. Something I just started trying a few days ago is Crest plaque rinse even though it burns some I force myself to rinse with it. I also get lesions in my mouth probably why it hurt because as the days go on it seems to be helping. If this doesn't work out the only other thing that has helped before was when a doctor prescribed a rinse with lidocaine in it. Lidocaine is one of the drugs they use for treatments of RSD and the rinse helped me in the past. It also numbs your mouth so you don't feel the pain as much. I don't know if you have a general doctor or maybe through the dentist not sure but it's a thought. I hope your daughter finds some relief no one should have to suffer through the kind of pain we are discussing. Just remember you being there and being supportive means so much. When you say that you don't know what to do I would say you already are doing something. You are supporting your daughter and believe me that is really everything when it comes right down to it. I'm so happy to meet you and hope tonight is a good night for both of you. Best Wishes Always, Robyn
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Post  maranathapeace on Mon Aug 12, 2013 6:25 pm

My Daughter has horrible pain with the front lower teeth and the right jaw. When this happens she can't even open her mouth to eat. She has been to the dentist and all is fine...this has happened other times when her RSD has acted up. I really don't know what to do anymore. She got the RSD when she was playing Hocky during gym class and twisted her foot.  

It took us years for her to be diagnosed and we went through all the trials I'm sure you all have. When she was 14 we finally found a fantastic Dr in Palm Bay Florida..he treated her with medication, trigger shots, epiduals and the whole lot. She got out of the wheel chair only to go through times of flair ups and then back to Florida. This went on for years. When all our family savings was gone we made a move from Jersey to Palm Bay. Sadly, we had to move back after a family illness and job problems. Then we started making the endless trips back to Florida again.

To make a long story short she was finally able to finish high school and get a job. It was the best job in the world as she was assistant to the CEO in a finacial office. She was able to use a talking computer when her hands were so bad she couldn't use them and was able to make up time on weekends or at home when she was unable to get out of bed. Then the jersey office closed and she was laid off. Since then she has been unable to find a job and has no health insurance.

She really needs some encouragement... I also as her Mom am wondering what others do when the mouth is involved, would appreciate any ideals...she no longer has a Dr...but thats another chapter.  Thank you all for listening..and I pray you have less days in pain. Sad Teresa

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Post  byrd45 on Thu Jun 07, 2012 12:47 pm

hi,
I only get a chance to check in here about once a month anymore. Been busy with my photography but still wodering if your gums ever resolved themselves. The orajel makes sense because isn't that like lidocaine ask your doctor same family one of the drugs that helps RSD symptoms. What you should find out is if they can make a ketamine cream for your mouth. they make a cream for my skin has to be specially made at the compound lab but it is the only thing that helps my lesions I get. Ketamine treatments do work unfortunately they don't have treatment facilities everywhere yet although in all fairness they should. If you live in Pennyvania,New Jersey,Mexico,or Florida there are treatment facilities and maybe there are others I am not aware of too. Anyway, I hope things have gotten a little better for you,
Robyn Smile
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RSD in Mouth

Post  msjan2011 on Thu Nov 10, 2011 12:59 pm

Dentures have been in place for 3 months. Learning to eat again but unfortunately still have chronic pain when I eat. Have appointment with neurologist in December but from what I have found out so far ... doesn't seem that anyone knows anything about RSD in the mouth except me. Oh well ... I'm only i pain when I eat ... sigh. Will just learn to live with it. No one even wants to talk to me anymore ... everyone ... dentist, general practitioner, oral surgeon all act like I'm a leper so I don't even bring up the subject anymore ... when I do they roll their eyes and escort me out of the office. C'est la vie ...





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RSD in Mouth Follow-Up

Post  msjanice2011 on Sat Aug 13, 2011 4:19 pm

Hello again,

I will finally get my lower dentures Monday. I was back to the dentist twice and he still tries to avoid the subject of my RSD but I talk about it anyway ... and he gradually escorts me out of the office ... but that's okay. The pain is not anything near the way it was the week after having the teeth extracted ... my sister said that was an exacerbation of the RSD but after rubbing the cortisone on my gums it alleviated the horrible pain tremendously ... it is now about the way it was before I had the teeth pulled ... which I can live with. Am anxious to see how much chewing I will be able to do after I get the denture but the pain I had while chewing was worse when I had the teeth so I can't complain for sure. Don't know if I'll ever be able to have a steak again ... but I couldn't have one before the teeth were pulled either. Life's good. At least I now know what I have ... even if my general physician, oral surgeon, dentist, and two neurologist offices still think I'm a real nut case ... but that's okay too. I'm going to continue to try to find a general physician, a dentist, an oral surgeon, and a neurologist who will understand what I have ... so wish me luck on that ... I'm retired now so I have all the time in the world ... really feel sorry for people who have this and NEVER find anyone who will believe them. Also, I'm lucky that I've only had three "exacerbations" ... once when I broke my hamate bone in my wrist, once when I crushed my elbow, and then having the pain in my lower gums for the last 7 years ... it hasn't spread anywhere else ... but if it does ... at least I'll know what I'm dealing with. Anyway, have a great day! Just venting ... nice to have a website where I can talk about this ... didn't post for awhile ... lost my user name and password but re-registered. Oh by the way, even though cortisone and a topical pain killer worked for me, my sister said that this isn't a proven remedy so she isn't saying that this would work for everyone who has RSD. She said I can use Orajel on my gums.


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Re: Sister and I just realized that you can have RSD in Mouth!

Post  byrd45 on Mon Jul 11, 2011 3:46 am

Hi ms.Janice,
Thank you so much for sharing your experience with us. I also have RSD in my mouth and am dealing with the aftermath of an extracted tooth gone wrong right now. I had it pulled since it was decayed and bad and causing jaw pain and now a week later I am still struggling with this extraction. I have been back to the dentist twice and some shards of tooth were removed the first follow up visit and the second time back he noticed signs of a virus in the area, sigh..now a referral to an oral surgeon to see if he can stop this pain. It still feels like something is left behind a splinter of tooth or something and it is sending my pain levels through the roof! When they do any kind of trauma to the body the RSD can flare.Unfortunately,there are still many doctors out there that are totally ignorant of the disease and needlessly blame the patient for something that is actually a very real disease.I hope your dentures worked out for you alright!
Robyn
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Sister and I just realized that you can have RSD in Mouth!

Post  msjanice2011 on Fri May 27, 2011 9:41 pm

OMG! So glad I found this website! I have had the most horrible week of my life and I've had some bad ones but this was the worse. Hopefully someone will recognize what I'm saying and give me some words of encouagement. I had to have all of my bottom teeth extracted last week May 20th. I have spent 30 years and about $30,000 trying to keep up with my teeth: crowns, root canals, gum surgeries, bone surgeries, dental implants, etc. etc. and my dental insurance will lapse on August 1st so I finally decided to take the plunge and get my bottom teeth pulled to stop this pain that I've had in the bottom teeth for especially the last 2 or 3 years. My dentist has told me for years that there is NO reason that my bottom teeth ache. So I listened to all of his suggestions. Had ALL of them root canal-ed (if that is a word) and was going to have all crowned and get partials ... which I had years ago but lost some teeth so couldn't use that partial plate. Now THIS was going to take care of the horrible pain in the bottom teeth he assured me. NOT! I told him they still are painful. He asked which one and I told him ALL of them. Oh of course he said that CAN'T be ... almost was mad at me. Eventually sent me to a root canal specialist. He re-did one of the root canals and said he didn't understand why I kept saying my teeth still All hurt. The regular dentist and root canal specialist took more x-rays and said ... my teeth looked perfect on the x-rays. At the next appointment, dentist said there WAS a spot on one tooth so if I had that tooth extracted the pain would go away. Yeah, okay. I knew better but had the tooth pulled and the pain in the others did not go away. He gave me the brush off again and I decided to go to another dentist and he sent me to an oral surgeon. One week later and I am still in the most horrible pain I've ever had. The oral surgeon saw me twice and keeps saying that it is normal pain and that I'll be okay. He will not give me an antibiotic. I tried to talk to him about the RSD and he said not to worry about this disease I keep talking about. Got the brush off again. Finally my sister (my physical therapist) remembered that 7 years ago after I crushed my elbow and had two operations ... while she performed surgery on my elbow ... she realized that I had RSD! When I described the pain in my gums as "like my gums are on fire" and I have sharp shooting pains going into my jaw ... we both had the realization that this is probably a flare-up of my RSD. All of these years I have been totally mistreated by these dentists and specialists ... they totally ignored me ... acted like I was touch in the head. And kept suggesting all of these expensive, painful, and useless procedures. Ignored my complaints about pain. Even my primary care physician (of 16 years) really upset me yesterday. My sister wants me to get a ... is it a medrol packet ... and the oral surgeon said no and so I left a message with my regular doctor and when I talked to her she told me off ... I didn't appreciate the way she talked to me ... she asked why I was calling her ... she isn't a dentist ... so once my new health insurance is in effect August 1st ... I'll have my new dentures by that time ... will just go along with the dentists suggestions so I have those ... with this insurance I'll pay $222 only ... then I'm going to make an appointment with a neurologist so if I ever have to have surgery again ... I'll get a referral from a doctor who understands RSD to a doctor or oral surgeon who knows RSD so I won't ever have to go through any of this stuff again in my life! Bad enough to be in such horrible pain .. and be mistreated on top of it.

Don't really need any advice but would be glad to hear from anyone who has heard of this RSD problem as it relates to the teeth.

Thank you for listening! I don't go on the internet that much but will be in touch again soon!

PS Still in pain but sister is going to visit me over the weekend and start me on something to help me get through this. When she worked on my crushed elbow she used lidocaine and cortisone. I hope those are spelled correctly. She is the only medical genius in our family ... and thank goodness I have her or I'd really be confused by all of this ... and never would have been able to figure out what was going on. The doctors have really been insulting ... and also very cruel.

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