RSD in Mouth?
 

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?

Re: welcome msjanice
 

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

RSD in Mouth --- So it IS real !!!
 

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

rsd
 

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!

RSD in Mouth (and wrist and elbow and maybe elsewhere)
 

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.

Hello to all
 

I don't have RSD, and I can't imagin how horrible that must be, on top of dental issues. I just want you all to know that these dental issues must happen because of the medicine we take. I just finished have tooth#18 pulled last week. to save it would be gum surgery, RC, and crown. I had two others pulled because I could not afford the $5,000 they wanted to fix those two with the same proccedures. I hurt emotionally, as there is no way on medicare/medicaid/food stamps, that a person can afford dental. My son had to lend me the money to have them extracted. It has become so expensive, I can truely see a day, that I won't do anything but extractions. I am great at cleaning my teeth, floss, inbetweens, all of it and I still get the trouble. I feel bad about this as now when I smile I see this blank space. I have pride I guess, and it hurts me when I am around my friends now and I don't want to smile. Why has this become so expensive, that many people don't go to the dentist because of the money issue? It makes me sad that all of us suffer with dental issues, even more so, when RSD strikes. I am thinking of all of you, and my heart and prayers go out to you. ginnie

RSD in Mouth ... etc etc
 

Gee, thank you for another posting! What bothers me is that, even though the neurologist, neurosurgeon, and pain management doctors have eliminated everything else with blood work, brain MRI, and xrays ... they still won't say that, yes, I have RSD!!! This drives me crazy because I WANT a diagnosis ... so I guess I'll keep searching ... but of course my health insurance won't pay for these tests again ... so I'll have to stay in the same health system so any new doctor will be able to look at my test results ... they said I have atypical face pain ... here again, the pain isn't in my face ... it is in my lower gums! Sigh. I told the neurologist that I'm okay as long as I don't have to eat and he said, "Why, what happens when you eat!"
Just shoot me! He wasn't even listening to me. The health care professionals are STILL driving me nuts ... but at least they are trying to treat the pain ... wish I could find a doctor who would also see that my dental problems are relevant. Sigh Sigh Sigh

Since I'm Fairly New ... I don't think I know what I'm Doing.
 

I apologize but ... I still need to get accustomed as to where everything is and what I'm posting where, etc etc. On my first posting I accidentally requested a poll and couldn't figure out how to get out of it ... oh well, if I mess things up ... please excuse! I'll learn eventually! Janice

don't worry ms janice
 

don't worry about posting to the wrong spot. I still do it almost two years later. I still don't have the nack for navagation very well.
Sorry your neruo doc didn't listen to you about you gum pain. He did answer you in a stange way. I hope you find someone who can figure out what is going on to help you. ginnie

OMG ... Chiara Malformation?
 

Hum, my neurosurgeon just sent me a report from my brain MRI ... I have something called a chiari malformation. Creepy ... almost as creepy as the RSD. By the way, his report indicated that I complained about jaw pain and that I have had several root canals and extractions in the lower mouth.
BUT, as I try to tell every doctor ... my pain isn't in my jaw ... it is in my MOUTH ... and I don't have ANY TEETH in my lower mouth. Anyway, thought all of you would appreciate the story anyway. Have a good weekend.

Hi msjanice
 

I am sorry to hear that you have multipal things medically going on. The RSD in your mouth is not so good I know. I have heard of Chairi malformation. There is a forum here for that. If you would use the search bar at the top of that page and type it in, it should lead to that forum. I do know there is help for that disorder. I hope your neurologist is a good guy and that you like him. I sure think that makes alot of difference. Having faith in your doctors relieves alot of the fear. Please keep in touch. I will keep you in my thoughts and prayers. You already know there is the RSD forum. I hope you make alot of friends here. Compassion is what I found here for sure. Please take care of yourself. ginnie

One other thought msjanice
 

You mentioned mouth pain in connection with former root cannals. do post to Bryanna, on Private messaging if you want. She may be able to help with any questions you have regarding your mouth, and possible problems left over from the root cannaled areas. gosh I wish you could get a diagnostic on that. Why is your insurance company giving you a hard time over the testing?. That is the only way to get the diagnosis. I do not understand insurance companies. appeal their decision with a doctors letter, that sometimes works. Have a good night. ginnie

Rsd in Mouth ... Chiara Malformation ... etc etc
 

Thanks Ginnie! Unfortunately the neurologist I went too was nasty but the neurosurgeon and the anesthesiologist and pain management doctor were all okay ... and my primary care physician believes me and has been really good lately ... the more tests results they send to her and the more reports they send her showing that I don't have MS, cancer, brain tumor ... the more she sees that I have a really rare problem in my lower mouth ... even my old dentist of 15 years ... after I stopped in and told him about this ... is seeing that I wasn't just complaining about dental pain for 7 years for no reason at all. Actually, my insurance company has allowed me to have all of my tests with no questions asked but I am just concerned that if I start trying too many neurologists they will finally say that they can't run these tests over and over again ... so I'm going to go back to the same health system where my neurosurgeon and anesthesiologist and pain management doctor are and that way the next neurologist I see can access my test results from the other doctors. Sigh. Wish we luck on finding a neurologist I can talk too ... that first one was a real stinker ... he acted like I was touched in the head ... like I was wasting his time. One woman on another website mentioned that she went to 7 neurologists before she found one that seemed to understand what was going on ... sign again ... but life's good otherwise ...

Re: doctor merry-go-round
 

Hi ms janice, I know you hate to go from doctor to doctor, no one likes it. Unfortunately it does take that sometimes before you find one that has the qualities and knowledge to help you. My PCP found my Neuro. I actually begged him to find one, that had compassion and soft caring mannor. He did find one for me, and he was a blessing in my life. It was not fun before that, as I had gone to several on my own. I was afraid to try again. Tell your PCP maybe that you are not having much luck, and maybe he will know who you can turn too. My PCP happens to be a good egg too. I want that comfort for you too, to know your doctors are all there for you. I will keep you in my thoughts and prayers, while you search for an answer. ginnie

Thank you Ginnie ... Good Suggestion!
 

I think I will definitely talk to my GP! Actually, I have to call her Monday and will probably go in to see her ... the neurontin that the pain doctor put me on two weeks ago has already decreased my mouth pain from a 10 to a 5! I did notice though that the front of my legs have been itching and burning and that happened to me one time when my sugar had gone up ... so I'm having blood work done next week to just to keep track of my sugar. I hope I'm able to continue on the neurontin ... it has helped tremendously but if not I guess there are other meds I can try.

RSD and Dental Problems
 

Just wanted to mention that I've seen several websites where those who are taking neurontin feel that it has caused lots of dental problems but I had all of my dental problems and lost all of my bottom teeth before I went on the neurontin ... so maybe RSD is the cause of the dental problems ... who knows though ... but it is a thought.

RSD in Mouth
 

I went to my second neurologist Monday. This one says I do NOT have chiari malformation. In fact he showed me my MRI picture and my brain is the opposite of a malformation ... the back of my brain is nice and high ... it doesn't go down into my spine after all. HOWEVER, this is about the 10th health care professional who just refuses to even discuss RSD with me. SCREAM for me! With this neurologist, on the form I had to fill out I put, under previous health issues ... RSD/Elbow/2003 and RSD/Wrist/2002. He asked me what that was and got really hostile ... like I was a criminal or something to even mention it ... so I just dropped it. He has me on neurontin ... it seemed to work the first week but the last two weeks I've seen no improvement at all. I believe you posted that your neurologist recognizes that one could have RSD in the mouth. Maybe someday I'll find a neurologist who will at least listen to me and at least CONSIDER that this may be the problem. With the other neurologist ... I am able to put information on a website which they gave me access to and I asked them to put RSD/Elbow/2003 and RSD/Wrist/2002 but they didn't put it on the website. By the way, after having three blood test work-ups, one brain MRI, numerous Xrays they still have found nothing that explains the pain in my mouth. Gee, surprise surprise! I knew nothing would show up because nothing ever showed up in my mouth when I still had my teeth in the bottom ... and of course nothing is showing up in the tests since I had the teeth pulled either. Anyway, I'm rambling. I probably should just drop the RSD issue but I'd feel better if I could find a doctor who would talk to me about it and not brush me off. I hope I'm putting these messages through correctly. At least my chiari is okay! Ha Ha Mouth pain is enough. Later.

Do NOT drop the RSD issue. Once you have had confirmed RSD in other places, it can go anywhere. I understand your frustration...have you tried seeing a pain management doctor? At least maybe they would be able to focus on the pain issue and maybe be better able to get your pain under control. I don't know what dose of neurontin you are on but it's not unusual for RSD patients to need a pretty high dose of it to get significant relief. Another option is Lyrica...that was the best one for me. There's actually lots of different options to try...some different combinations that are often helpful.

Maybe a pain management doctor would be worth a shot to at least get your pain under control. You should not have to suffer. And in my opinion...any doctor who gets hostile with a patient for even suggesting a possible diagnosis should be shot. I mean seriously...it's one thing if they don't agree and they can give you a list of valid reasons WHY they feel that way...but to just get hostile with you and ignore your concerns is absolutely ridiculous. My experience with neurologists has not been good with my RSD...the ones I have met just don't seem to really believe in things that don't show up on tests and MRIs.

But it's not limited to just neurologists...I have met many uninformed doctors who just didn't know anything about RSD. My issue with the neurologists was just that they claimed they knew all about it and talked down to me but the things they said were just plain wrong about RSD. No point in arguing with them though...just move on to another one because the odds that you will ever change the mind of a doctor like that are slim to none. And it's not your job anyway...you are there to get treatment and if one doc can't help you then you move on to the next.

And if a pain management doc doesn't work out then maybe your family doc would be willing to try some different chronic pain meds that work for RSD. Just keep fighting until you find someone who is willing to help you get this pain under control.

Hello msjanice
 

I am so dissapointed for you! I just hate it that your doctors are not listening to you. the more I hear about this RSD, the more I hate the condition, especially because people are being ignored and treated like they are nuts. That doctor should never get testy with you. There is no excuse in my book. I lost a neruo doc, because I dared to say "NO" and question him. I wanted to be taken seriously, and he didn't want to listen. This happens and I would keep going until someone listens to you about your RSD. This disorder is not in peoples heads. What is wrong in the medical community when it comes to this condition? does anyone know why this happens? So sorry Janice, just keep on trucking to get the help you need. In the meantime I am going to do some more research about RSD. I just feel bad, when patients arn't getting listened to. ginnie

To: Catra and Ginnie ....
 

Thank you, thank you, thank you again for your encouragement ... what is SO interesting to me on this website is that I get responses and those of us who have had RSD get the same reaction from the health care professionals ... this is really strange BUT ... believe it or not ... I went through something similar with my cat a few years ago! The conditions aren't related at all but NO vet would listen to me ... I even called several universities, animal shelters, veterinarian schools, etc etc and got the brush off. Just for fun, you can see my cat at the following website:

http://www.tffelines.com/tessstory.html

Well I'm getting off the subject ... I saw two pain management doctors 3 weeks ago ... a referral from a neurosurgeon I was sent to ... they put me on the 300mg per day neurontin ... the one anesthesiologist ... spelling? ... was open to my suggestion that it was RSD but he brought the pain management doctor in and told him what I was thinking ... that I have RSD in my lower mouth ... and that doctor sort of put a lid on my suggestion about RSD ... again, I was shut down ... but again thank you for letting me know that this is not uncommon ...

Anyway, the pain management doctors said I didn't have to come back ... huh? So that's when I went to another neurologist and at least he was willing to discuss my MRI and ordered more blood work ...

This new neurosurgeon ... who acts like he doesn't even know what RSD is ... oh please! ... gave me a script for 300 mg 3 times a day and told me I could adjust my dosage up if I felt the 100 mg 3 times a day isn't helping me ...

I did have slight improvement with the 300mg per day but next week I'm going to up it to 600 mg a day ... actually I was happy with the slight improvement at this point ... still have difficulty chewing but not as bad ...

I have one VERY VERY BIG thing in my favor ... my sister ... a physical therapist ... diagnosed me in 2003 with RSD in my elbow ... after I had broken my elbow ... had two surgeries .. she told me back then that she hopes I don't have it appear anywhere else because she has been in conflict with doctors for 35 years about RSD ... they talk to HER as if she is nuts in the head ... she has treated about 5 people with RSD in 35 years ...

What is really scary to me is that these doctors have no idea whatsoever about what a horrible situation you are in when you have an exacerbation of RSD ... when I first broke my arm in 2003 I went to a physical therapist who was trying to force my arm into who knows what position and I was SCREAMING and she kept pushing and was saying that I was getting myself UPSET ... like I was a nut case ... so I called my sister and she, knowing me and how stoic I am ... knew something unusual was going on ... and so she became my physical therapist and it took her months to get my arm moving ... she got it to about 95% movement ... and of course diagnosed the RSD.

Talk to you later! And I definnitely won't give up ... I'll take my meds and go back to the new neurologist in 6 months ... he said he'd see me twice a year ... but will still keep plugging away about this ... I'll just touch base with him twice a year because I will at least have him around to monitor my meds ...

By the way, in the years since I had my cat treated for the tritrichomonas foetus, when I take my cat to the vet once a year, the vet NEVER even mentions the condition that Tess had ... sound familiar?

What I see, as you have, as soon as you challenge them, they get angry and they want nothing to do with you. So on and forward. And at least I have my sister's support and the support of this website! So I am one lucky RSD person!

That's just awful...for doctors to tell you that you don't need to come back again when they have failed to treat your problem...should be criminal. Well...keep going with the neurontin since it is helping...strange that the doctor would tell you to adjust the dose yourself and not monitor your usage more closely...but so long as you don't end up in a situation where you run out of meds and are careful. If you start to experience any weird side effects though you should see a doctor immediately.

Again...what about a general practitioner? That's the doctor I am seeing now who is managing my care and I have gotten SO much better since I started treating with her. Like you I was bounced around a lot and no one seemed to be able to help me (more like they didn't WANT to help me). When my family doctor who had been my doctor since I was born (literally...he was the one who delivered me), when he told me that I might just have to spend the rest of my life in a wheelchair that was when I got angry, put my foot down (figuratively), and decided to take back control. I switched doctors and found someone who is compassionate, listens to what I have to say, always has new ideas, and never acts like there's no hope. I truly feel like there is a partnership between the two of us, and since I started treating with her we have gotten me walking again and consistently improving. She doesn't specialize in RSD (though she is familiar with it and continues to educate herself about it)...but more than anything she is just a compassionate doctor who is really interested in treating her patients. Maybe in your situation it would be good if you could find a general practitioner like this who would be willing to listen to you and try different things to help.

With my eyes I can't tell you how many rsd specialists said go to another eye doctor after 50 apts of them and 10 specialists or blew off the eye pain. This was with pain doctors who deal with rsd at Cleveland Clinic. I understand your frustration with that in regards to your mouth. I finally came to the conclusion and this could be very wrong but that if I could find pain control for the limbs it would in turn help with the eyes.
For me neuros more were about doing a lot of dx testing to rule out other conditions and then I was also dx with PN. They did a little with meds. I am sorry did you say what state you live in? Have you called a teaching university hospital in your area the pain dept/anestesolgy? I ask because that is how I found my best pain doctor better then at Cleveland Clinic and UCLA.
Hang in there and hope you feel better

RE: hi again msjanice
 

I really am sorry about the RSD and its pain. I have NP which isn't like that, but hurts none the less. I really think the medical professionls need to get a grip on this disease, acknowledge it, and start to educate themselves about the condition. Just because they became doctors, does not mean they know everything. It is obvious, they don't know enough about this condition.
To brush a person to the side, because they can't admit they don't know, is not what the hippocratic oat says at all. The reason it is called a practice, is because they ARE to PRACTICE and learm themselves. I really wish doctors would listen to their patients more, and stop putting themselves above others. Jusst because they go to medical school and earn a degree, does not make them Gods. I had a huffy doctor, who dismissed me because I said no to a proceedure. If he sat me down and talked it over, I would have been more agreeable. Instead he demanded me to do something I was clearly frightened of. He talked down at me like I were a bug. I could not deal with that kind of attitude. We need not just the skills the doctos have, but their compassion too. We need them to keep educating themselve and researching for our benefit on those conditions, they don't enough about. I am just venting because too many patients get brushed off, or told it is all in their heads. I had a throat problem, it was in my "head" for 5 years, until one doc. finally took a look. It wasn't in my head at all! But a serious condition. So now I am upset, and don't really know where to vent my anger about this. I too was brushed aside, and doctors need to stop doing this and listen. ginnie

Daniella, wait until you hear this ....
 

I am actually going to the neurologists and pain management doctors in Pittsburgh PA at the University of Pittsburgh Medical Center and these doctors are also on the faculty in the neurology department at the University. But these aren't the doctors who mistreated me ... the first neurologist I went to was independent and wasn't in the UPMC system. The only problem I've had with the neurosurgeon, neurologist and two pain management doctors at UPMC is that I mentioned RSD and they gave me no response when I mentioned it. So my plan is to keep my 6 month appointments with the neurologist I am now seeing and as time goes on ... and I get stabilized on my meds ... if there is such a thing ... I may mention it to him again later on ... I think you have to build up a relationship with the doctors first? Actually, I discussed this with my general practitioner (been going to her for 15 years) and she at least listened to me ... I'm sure, as all of these results come back to the new neurologist, he may be more receptive to me ... since he is now ruling out everything else with all of these tests. Gee, I hope I don't gain weight with the neurontin. I've seen many people mention on the internet that that was a big side effect of neurontin but the listed side effects says that it is only 2% ... so hopefully I'll by pass that side effect. I raised my dosage last night again and so far just feel a little off balance but that happens with each increase for a few days ... my fear is that in years to come I could have a flare up of the RSD in another part of my body and again no one would believe me. I noticed that only people who have had RSD understand how debilitating the pain can be. I am usually very stoic but when I had it in my elbow and I couldn't stand to have anyone touch it and after I had my teeth pulled and the pain was so bad for about a week ... rhose were the two times in my life when I thought ... wow, I am REALLY in trouble here ... but then the pain subsides and the health care professionals are sort of like ... see it wasn't that bad ... but we know that it WAS that bad. But life's good ... and will be better if the pain lessens some more .... looking forward to a day when I can eat something and enjoy it without pain! (What did they finally do to help the pain in your eyes?) Actually, for now I am thinking like you ... I'm not going to worry so much about what my condition is called as I am going to do what I can to get some of this pain relieved.

Thank you for your thoughts. My eyes actually everything in terms of treatment for it from steriods,anti inflammatory,draining,I could go on made me worse. The more eye specialists that touched them the worse they became. Just like my legs which have RSD and now no doctor touches them my legs. Anyhow so I just have been on meds like neurontin etc and no as needed meds anymore. I am very cautious about treatments and like I said no doctor even touches me anymore because of the 5 years of being put in more pain rather then less. I was on neurontin for a long time and worked up to 2700 I did not have the weight issue. Everyone is different though. I try to stay in the moment with side effects of meds because I already live in fear and worry so to add more is not good and also who knows you may benefit. Sometimes it takes time,the right dose and an increase.
I wish I could offer more to you. I agree that unless you deal with this 24/7 pain that is horrid and so much unknown of what is going on and what the day will bring you really can't understand. I always feel though people like doctors or general can be compassionate. I hate being told XYZ to cope or to feel. For myself when I don't understand what someone is going through I don't judge or give them advice. I just listen and give my thoughts of how sorry for their struggle.
Ok sorry for the novel. Stay strong.

Again, I appreciate your in-put SO much!
 

:winky:I know what you mean in everything you said! I too try not to give anyone advice because each situation is SO different. I always think ... wow, I'm the last person in the world who anyone should listen to. Ha Ha My niece used to ask me for advice about the guys she would be dating ... I told her I have no right to give her advice ... ha ha again. As I've mentioned before ... I can't keep track of what I'm writing and what response
I'm getting because I put so much into one message. I'm just hoping someone will read my messages somewhere down the line ... the way I've read some of the messages here on this website ... and get some little piece of information from it ... the most important thing for me has been that someone answered me! Don't always get a response at all on some of the websites. One good thing to report: I increased my dosage again to 400 mg a day ... not a high dosage ... but again I got a little bit of a result ... every time I have raised the dosage ... first 100/day and then 200/day and then 300/day and now 400/day I got a little tiny tiny bit of relief! But, going back to what we were talking about when it comes to giving anyone advice, that probably wouldn't be the case for anyone but me ... it is so ... well, complex ... hum, complex regional pain syndrome ... thank you again, I'm going to take everything that I've read on this website into consideration and back off for awhile ... don't want to over burden everyone with my minute to minute updates ... and I'm going to take whatever information I get from the doctors and try to learn from all of it ... all is good ... better than it has been for a long time in relation to my mouth pain and chewing ... my health otherwise is great ... so I consider myself very lucky there. Janice

Janice it took me so long to work up to a high dose of neurontin. My pain doctor had me do it real slow to lesson side effects and I still had some like an out of it and pressure in my head etc but they wore off quick. Everyone is different though but some even need 3500 of neurontin I was told.
As for not wanting to give advice etc I think that for myself I just try to remind myself and tell others that yes we are all in horrible pain but respond different. What works for one may not work for another. What causes a flare up in one may not in another. Etc.
Stay strong

Neurontin side effect?
 

Thanks again! I took my first 300 mg dose of neurontin last night and it helped the pain VERY MUCH ... but my lower lip is swollen on the left hand side so my sister suggested I call the doctor but he hasn't called me back ... hope I don't have to go off of the nuerontin because it helped me SO much ... maybe the swelling is from something else ... but it is suspicious. Sigh. Talk to you again soon! I'll probably take a work assignment again soon so won't be on the computer as much. :o

Hi msjanice/ possible reaction
 

Glad you called your doctor. If your swelling in your face continues to keep going you will need to go to the hosptial. Angio Edema can happen with certain drugs. Your face would swell, sometimes you tounge too. this would be dangerous so keep on top of it. Wait to hear from your doctor, but if it gets worse go on it OK? I have had this happen. so I am a bit worried. ginnie

my new neuro doc tried to tell me that is what I have after my Neuro of over 8 years passed away. I was told that I have T.N. by him but now my new Neuro says he thinks it is RSD . My PNS ...aka spine cord stim saved my life . after being on the med merry -go - round for 3 years and nothing helping. I have had my stimulator for ... this July will be 10 years. I do not think it is RSD it dose not get red or feel hot it has not spread:confused: so I am just sticking with my original Neuro doc and say its is T.N .
here is my thread in the T.N. forum about PNS for face pain.... long read of others having the surgery but may be helpful ...
http://neurotalk.psychcentral.com/thread124048.html
PEACE
BMW

T.N
 

Hello ... my neurosurgeon and my neurologist told it isn't T.N . Also, my pain isn't in the face it is inside of the mouth ... the whole lower gums ... had to have my teeth pulled because of the pain in that area ... and have dentures ... so who knows ...

Ginnie, I didn't hear from the doctor office so I am not taking anymore of the meds until I hear from his office. This doesn't sound good to me. Didn't happen with the 100mg 3xday but happened after I took that 300mg dose Tuesday night.

Pain is about 80% better but what good is it if this causes me serious health problems in the end.

:(

Later.

I hope your doctor called back and if not I would keep calling or ask to speak to the nurse. I hope you can stay on the med too. Like I said some side effects that one can handle to go away when one adjust. Obviously some are too bad to stick with so it depends.
Hope you feel better and what ever work you do goes good.

Neurontin, etc ....
 

Hello ... the nurse called me back this AM and said to stop taking anymore of the neurontin until she talks to the neurologist but I haven't heard from them but I am sure they will call me back tomorrow AM ... he is a professor too and she has a hard time getting in touch with him ... if it was really really serious she would have called back promptly ... I just happened to have an appointment with my general practitioner this afternoon to go over some blood work and she feels that this would have happened weeks ago when I first went onto the neurontin 100mg/3xdaily but of course feels that the neurologist will know better as to what I should do. Haven't taken anymore of the neurontin ... nurse said he may call something else in for me but I'm keeping my fingers crossed that I can continue on it ... in some capacity ... I don't know ... I have a feeling that it is related to the increased dose Tuesday PM to 300 mg because while my pain decreased 80% over night ... the lip also swelled up over night ... go figure ... later.

I'm so sorry. With the pain decrease did you maybe do anything else that may have caused the flare? I know that it's fairly normal when we FINALLY find something that relieves the pain that we figure we can just go back to normal and then immediately have a flare (which can be swelling) because we did too much. I know you said you have difficulty eating...did you maybe try to eat something that you wouldn't have been able to if the pain weren't reduced? Just trying to offer hope that maybe it wasn't the neurontin.

There are other options though like Lyrica, Cymbalta, etc that might be helpful that the doctor could start you on. Everyone has different reactions to different meds so if neurontin isn't the one for you then maybe another one will be. Stay positive...hope they get back to you soon.

Hi msjanice
 

So glad you are in contact with the doctors. The alergic reaction or lip swelling isn't a good thing so It is good you are waiting to hear from the doctors office. Since my two bouts of this kind of swelling, it make me awhere of the condition. good wishes to you and I hope it works out. ginnie