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.

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.

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

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.

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

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

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.