I went back to reread her paper after reading this because I know I didn't see her write anything about us getting "high" or being addicts. I believe you must have seriously misunderstood or didn't read it completely. I want to make it clear that I am not starting a fight, flaming you or being mean. I thought it necessary to point out to you the fact you did not read her paper very well.

I found a couple of places where, and correct me if I'm wrong, I believe you completely put words into her mouth so to speak that weren't there. I'm going to quote the parts I found and I would ask you to quote where in her paper she said we get "high" and are addicts.

This part she is saying that some experience high relief in pain for awhile from meds. I also see that she's saying our bodies become tolerant to a certain med,not just pain meds but all of them, after a certain amount of time.

Here I see she said that the meds are highly addictive, which they are. Ask any doctor, narcotics by their very nature are labeled as addictive but it does not mean WE will become addicted. We can't become addicted simply because we experience a great deal of pain and we don't take them because of any psychological need. Our bodies to build up a tolerance and our bodies become dependent on them. The word dependent has nothing to do with addiction in this context. It also does not apply only to narcotics. The words tolerant and dependent describe a fact that happens after taking any medication for an extended amount of time.

I also see that she stated another fact about narcotics. They are abused by millions of people because they do get a high from taking them. She says that anyone being given narcotic drugs need to be monitored so they do not become addicted.

No where in the above does she state that people with rsd get high from their meds or that we become drug seeking addicts. Another statement of fact is a great deal of Pain Management doctors DO require you to sign a contract and regularly submit to a urinalysis. I had to sign one when I went to the 1st appt with my pm. If you don't sign it, you don't become a patient of his. It's that simple. I also have to have a urinalysis done once every 6 months. The whole first year I had to do it every single visit! I promised in signing that contract I wouldn't get any meds from another doctor. These contracts are there to protect not only the patient but most importantly it protects the doctor. As with anything else doing it or not is up to a individual pm doc. Most do, some don't. Just because you haven't had to do it does not mean many others don't.

I am offended by the fact you took things completely out of context and put words in her mouth. She worked very hard on this and IMO presented a VERY thorough piece of work about rsd using our own words in places to make the point to non rsd'ers that this is real.

Once again, I invite you to do what I did and quote the specific sentence or sentences where she says we get high from our meds and we are addicts.

Respectfully,

Karen

Hi Denny,

I know we are close friends but I also don't agree with what you said about Andrea's paper article! I think it was very well written and very informative and in NO way did I feel offended by it or think that she was making us out to be drug seekers!!!!! You CAN become addicted to pain medications even if you are in a lot of pain and have problems!! My Pain Management Doctor is always concerned when prescribing me any highly addictive medications as he doesn't want me to become addicted at my age!! I personally chose to come off all of my medications as they weren't doing anything at all and were just making me a lot worse - I think that is one of the problems for many people, the meds aren't working for them but rather than coming off them, they don't and stay on them for a long period of time which is why their bodies get addicted and build up a tolerance to them!

My nanan had Progressive MS and she become addicted to one of the sleeping medications that her Neurologist prescribed her - she convinced herself that she couldn't sleep without it even though she probably would have been able to!! Just because you have a known health condition, doesn't mean that you wont become addicted to the medications because in some cases you can ... again though, everyone is different on how they react and most medications that we are on ARE addictive unfortunately!!

I haven't had the SCS implanted so I can't comment on that however I have seen pictures of them implanted in people bodies and they DO seem to be pretty big!!

I too was pretty offended by what you said and I know Andrea spent a lot of time on her piece of work and I think she deserves a lot of credit for what she did ... she doesn't deserve for people to tell her that she is wrong as she is going through a lot right now!! Heck, even doctors don't know what the cause of RSD is or anything about it for that matter so I don't think anyone will ever be fully right at the moment!!

I'm sorry that you were offended by Andrea's article but I also feel that it was beautifully written and deserves a lot of credit!! This lady has RSD and she is still going to college and writing about RSD trying to get on with her life and she doesn't need people to judge her in a nasty way!!

Andrea ... I love the article and thank you so much for writing it for us! I'm SO glad you got an A+, you deserve it and don't let anyone else tell you otherwise!!

Okie dokie everyone. We all have our opinions and have the right to them, but this thread is getting way off topic.

Andrea posted her paper. We all thank her for that. She put a lot of work into it. It is her research and perspective.

Not everyone has to agree with it. She never asked that of anyone. She has replied to dennyfan, so enough said.

More discussion of the matter needs be done by PM.

so i was thinking that maybe we could make this a sticky thread? along with the surveys i posted, so we can all refer to what others have gone through, procedures we've all done etc. especially for the newbies that come join us. yes? no? maybe?

haha idk how to do that tho...
i'll move up the surveys so someone can sticky those too, or help me sticky them... idk how that works..

thanks!

Excellent Paper

Thanks for sharing your work!

Dew

I concur with Denny on your writing about narcotics. I have never had a high from my medication. With all I take I still have pain even through the breakthrough meds. Narcotics are essential for those of us that have intractable pain that does not respond to all other treatments. the leading doctors in the world just held a conference on the use of narcotic and endorsed full heartedly their need to those of us with intractable pain. You need to to your research and read Dr. Tennant's Handbook on Intractable Pain. It is free on the web. This type of writing is dangerous fro the community of those of us with intractable pain. It infers "addict behavior".
Regardless of your good intentions. Be sure to correct that section immediately. It is in accurate. And dangerous writing. Read and do your home work and correct that section. the video is on Dr,.Kirkpatrick's website and is called the adverse affects of narcotics for those with intractable pain. The heading sounds like they are not endorsing the use but it just the opposite. They are merely discussing the side effects which must be handled like constipation. Please correct your errors in your paper. It will take you one hour to read Dr. Tennant's Intractable Pain handbook. This is a "Bible" to survival for those of us with intractable pain. I have full body rsd and have been treated by Dr. Schwartz man, Dr. Rohr in Germany, Dr. Kirkpatrick and many other international recognized experts. Pleases make your corrections.
Having gotten hysterical and said all that congratulations on your hard work and sharing it with us. This is just a frighting area for those of us that have no other recourse. So it is important to us that it is written about correctly.Thank you. CZ

This subject was already covered for a while. I did do my homework, and never did i state that we are drug seekers, or just want to get high. It is very well known that narcotics are highly addictive and must be monitored because of their high demand on the streets and the possibility of misusing them. I did well over 100 hours of research on my paper and no where did I state anything that I cannot back up by the research that I did. What I wrote is accurate, I'm sorry you think otherwise, and I feel that I have described/given an overview of RSD and various other subjects that relate to it very well and I do not need to rewrite any of it. The truth is, is that we do need various medications on a daily basis to keep sane, and unless somebody can understand that then yes, we will unfortunately be viewed occasionally by both our peers and by other doctors as drug seekers. And that is what i was trying to get across in that section. Many of us are/have been looked at by others as just wanting to get drugs, I personally have had several doctors think that when i've gone to the ER because my pain was so bad. I've been sent home w/o treatment because they thought i was just some young adult wanting to score a quick high. It may not be a reality for everyone who takes narcotics to be viewed as drug seekers or addicts, but it is for some of us. And I have also been to many highly acclaimed pain docs/rsd specialists, and have been told several times that narcotics aren't an ideal drug to use because of the high rate of addiction, the damage continuous use does to the rest of our body, and the high likely hood of our body building up a tolerance to them. I was not describing what all of us go through or experience, because each of our cases are different. But was giving an overview of the disorder, its treatments, what it is, how it affects us, etc. And that was stated in my paper- that each case is its own and no two are identical.

Very well written!!!!! You really got to the heart of the matter, not just with informative information but with real insight on how one feels and deals with this problem! I do agree with the narcotic thing but as a nurse I can tell you this....narcotics are not made to take all pain away just the way one perceives the pain. Some, yes do get a feel of a high although those of us who have high tolerance to pain meds don't get that feeling.....which when you have had this problem for any length of time is probably the case. It is said that physical dependency can happen even after taking narcotics for a week, the difference from physical and mental is huge. Physical dependence will make a person often get symptoms such as diarrhea, hot/cold feelings and in general feel like they have the flu. A person can be physically dependent and not mentally. It is a touch subject as most of us probably take some form of narc. and function just fine without high feelings. When you go into a pain management doctor they typically start on the lowest dose possible and increase and tolerance decreases. I would love to see a study someday when someone looks into RSD and how it works with nerves and tolerance to pain meds, because I swear i didn't think I was tolerant until now. Maybe it has something to do with our uptake and metabolism. Anyway, overall I think your paper has some good points and I like that you touched on that it isn't a mental condition because I have found doctors who still believe that. Good Luck!
Jennelle RN

Ali, I don't know where you got your information about SCS implants being big. Especially since you dont have one. Please go to the Medtronics website. Look at Neurstimulators. They have the size 2.1" by 2.1" by .04". Some are even smaller than Medtronics. My Medtronics is larger than my friends. She has a different brand. The remote control outside the body is the size of a full size computer mouse. I would do some research into this. You never know when this may be useful to you someday.
Denny

CZZ74, I apprecite you posting even though it wasnt popular opinion. I felt less alone. I tried to write it in a way that wouldnt be too offensive & got attacked anyway. I just felt like we have this negative imagine hanging over us enough. Some days I would give anything to get a high off my pain medication. Just to be taken away from this for awhile. Does that make me a bad person? I dont think so. I wont drink a drop of alcohol because of the mixture with my meds. And I dont misuse my prescriptions. Yet there are people out there labeling me & my friends. I dont like it. Take care & thank you for making me feel less alone.
Hugs, Denny

PS Here is a link with a picture of how small Advanced Bionics SCS is http://www.prnewswire.com/mnr/advancedbionics/12205/